Sunday, October 30, 2011

Crazy for Coconut Fish

My kids are crazy for coconut, particularly for what we call "coconut fish." This is another easy recipe and not very exotic. But the kids love it and Ani has taken to reciting this recipe to other moms at the playground which totally cracks me up!

Shredded, dried coconut
Coconut oil
Sea salt

Step One: Cut (knife or kitchen scissor - both work) the fish into fish sticks. If you have kids (or a husband who likes to eat like a kid) this step can make all the difference in the marketability of the meal.

Step Two: Pour the shredded, dried coconut onto a large dinner plate. I usually pour out about a cup of coconut for a pound and a half of tilapia.

Step Three: Rinse the tilapia and roll it in the coconut shreds.

Step Four: Pour coconut oil into a pan over low heat and pan fry the coconut fish. Sprinkle sea salt on the fish as it is frying.

The sea salt is *crucial* to the flavor - we use the Celtic brand and without it this recipe is totally ho hum. But with just a bit of sea salt and the coconut crunchies it is a major hit. There are other kids at preschool who now get this in their lunchbox after jealously eying Ani's leftovers last year. Enjoy!

- Kati

p.s. Many thanks to my friend Kim for the inspiration behind this wonderful and simple dish. We eat it every Tuesday so if you ever need a taste test that is the evening to show up.

These Pancakes Are "Off the Chain!"

Janice, you made my day when you wrote me the e-mail that said, "OMGOMGOMGOMGOMG These pancakes are off the chain." So this one is for you, Mama!

To get to this recipe, we added together, rearranged, and changed two recipes (one from and the second was e-mailed to me by my friend Molly). We tweaked enough that this shouldn't match anyone's recipe and if it does then it is because great taste buds ended up at the same spot.

2x 1/4 cup coconut oil
1/4 cup honey
1 cup of butternut squash, already baked
1/2 tsp of Celtic sea salt
1/2 cup of coconut flour
8 eggs
vanilla, optional
cinnamon, optional

Step One: Put the first five ingredients in the blender in the order given and blend well. I'm sure this sounds like I'm micro-managing you. Here is my reasoning:
Put the flour in last or it turns to cement in the bottom of your blender. Even with a Vitamix. Also, use the 1/4 cup measuring cup twice for the coconut oil instead of a 1/2 cup measuring cup so when you measure the honey there is no time or honey wasted as it will come out of the measuring cup easily.

Step Two: Add the eggs and, if desired, vanilla and/or cinnamon. Blend well.

Step Three: Pour a good quantity of coconut oil into a large frying pan on low to medium-low heat. I have an electric stove and our magic number is between the 3 and 4. Another tip: two pans is even better / faster. Last tip: pour the batter into the pan in small quantities so the pancakes are easy to flip.

Pour and flip, check oil in pan, repeat.


Grain-free Roast with Gravy

If it's Sunday, it's gotta be a slow cooked meal! My dad is *the* connoisseur of all things gravy. I made this on a Saturday for dinner with my parents and he asked a lot of questions and seemed to be taking mental notes. I think he might actually try this sometime. So that leads me to believe I'm really onto something. LOL!

This is adapted from a recipe in Cook's Magazine which was adapted from a recipe from Mary Todd Lincoln (if I remember the article correctly). It is EASY and would be a great thing to serve if you have someone you want to impress. Just try it once first so you have some confidence on the day you are trying to impress said individual(s). I'm documenting the full set of instructions since some people are more experienced cooks than others and this is a GREAT recipe for a very novice cook.

Special Equipment
Dutch oven

This is an excellent recipe for a weekend. Start the liver soaking (optional) at least 8 hours before you want to serve and start working on the rest of it 4-6 hours before you want to serve.

Grass-fed beef roast (fatty cut) or short ribs
Celtic brand sea salt, coarse grain
Onions (+ fennel / leeks / celery / whatever)
Extra virgin olive oil
Liquid (wine / stock / water)
Champagne vinegar
Bay leaves
Garlic (optional)
Liver (optional)

Step One: Soak the liver
Before cooking with liver you want to soak it in fresh lemon juice for at least 4 hours. According to various sources (Nourishing Traditions cookbook, for one) this will help draw impurities out of the liver and improve the texture. We do this whenever we use liver for any recipe. I am not the best planner so sometimes my 4 hours is a little short and other times it turns into 24 hours. The liver is very forgiving. I soak it in the lemon in a glass dish in the fridge, with a lid on top.

I am not a huge fan of liver but I am a huge fan of the nutrients it imparts and for some reason my body slowly begins craving liver now that I am eating it more regularly. Even if you do not like liver, try it in this recipe. The nutrients from the liver leach into the gravy liquid while the pot roast cooks. It is a sneaky way of making this gravy ultra nourishing. The bonus is that it turns out my girls crave the liver cooked this way. Even if you discard the liver meat after cooking you will have added to the flavor of your gravy AND boosted the nutrients you feed your family.

Step Two: Salt your meat
Rub about 1.5 Tbsp of sea salt onto the surface of the meat and let it rest on the counter for approximately one hour. I usually rub on the salt and about 15 minutes later I start prepping my onions. I definitely short change the hour and at other times get distracted and it sits for just over an hour. It is still always delicious (the best recipes are forgiving recipes, no?). I used to set the meat on a rack, per the magazine recipe's instructions but I don't like the extra cleaning of the rack so lately I just salt it and set it on the paper it was wrapped in and it seems to be fine.

If you want some yummy roasted garlic or want to impart a garlic flavor to your meat cut a few slices in the meat with a sharp knife and put a few cloves in the meat. I usually prefer just to put the garlic straight in the bottom of my dutch oven in step 3 but my dad is more of a "garlic nestled in the meat" kinda guy. Of course, this past weekend when he was here I forgot the garlic altogether, so that is fine too!

Step Three: Veggies
Cut off the ends of the onions, chop them in half, and peel off the dried layer(s). Set the flat side down and thinly slice the onions. I usually use around 2 very large onions. If you have some fennel or leeks or celery and would like to put them in as well then slice them thinly also. By thinly I am talking about 1/8-1/4 inch slices.

Add the thinly sliced vegetables and some olive oil (drizzle a time or two around the pan - maybe 2 Tbsp or so) and cook on low heat for about 15-20 minutes, stirring frequently. You want to cook them enough that the onions start to turn translucent but you are not trying to caramelize them, which can take hours. They will begin to caramelize during the cooking process. I haven't decided whether the major importance of this step is in the beginning to cook down the onions or if it is just to reduce the volume of onions so there is room in the dutch oven for your roast!

Step Four: Prepare to throw it in the oven
When ready, pile up the onions in the middle and set the roast on the pile of onions.

This is probably the only important part of this recipe as the rest of the recipe is something that is in every experienced cook's repertoire. However, most of my friends do an extra step where they brown the meat and my big A-HA cooking moment was realizing you don't have to do that somewhat annoying and time consuming step. The pile of onions will keep your roast out of the liquid as it cooks and not let it stick to the bottom of the pan at the same time. You will get a browned roast without the extra work of browning it first. A-HA!!!

Add about 1/4 - 1/3 cup of liquid. I use homemade beef stock if I have it. Otherwise a little dry white wine or water will work. If you didn't use white wine then add about a Tbsp of the champagne vinegar. Finally, throw any herbs into the liquid you want to include. Bay leaves and thyme are my stand-bys but if you have other favorites feel free to add them too. Tuck the lemon-soaked liver into the liquid. Make sure it is in the liquid (versus the roast that you want to keep out of the liquid). This is also the time to drop in some garlic directly into the pot if you want to do that. Or set it on top of the meat if you want it baked. Yum!

Step Five: Slow cooked goodness
Put the lid on your dutch oven and pop it in the oven at anywhere from 275 (best temp) to 325. If I'm running late on time I cook at 325 and it takes about 2.5 hours for a 2.5 pound roast. If I have enough time I cook at 275 and it takes about 3.5 hours for a 2.5 pound roast. These times are approximate as my life is too busy to track these details carefully. But it is a very forgiving recipe and I've never been disappointed. If you pull the roast out of the oven and it isn't falling apart easily then give it another 30 minutes or so.

Step Six: The best gravy EVER!
All this typing is making me HUNGRY! Once your roast is finished then take it (and the liver if you added liver) out of the pot and set it on a serving plate and cover to keep it warm. Next, remove the bay leaves and any other herbs that need to be removed (I use fresh thyme and take it out here so I don't have to worry about the stems poking anyone in the gravy). Then get all the flavor off the sides of your dutch oven by using a wooden spoon and rubbing the onions on the sides of the pot to pull all the glutamates (the fancy word for yummy goodness) into the liquid for gravy. Finally, pour all the liquid / onion mixture into a stainless steel bowl and use a stick blender to blend it. Or pour it into your blender and blend it. Or do this step in a food processor, but a quick note that if you can keep it out of plastic as you do not want any chemicals leaching into your amazing food product.

So that's it!!! I'm sure I've missed something in this write-up so leave me a note if you have a question and I will edit the post as necessary. This is E-A-S-Y and you will look like a rock star. When people rave you can just sit back, smile, and give thanks to Mary Todd Lincoln!

Saturday, October 29, 2011

Shifting Context

Pick out the lovingly abusive parent:

    A parent who does not allow their child to eat cotton candy but brought along a healthy snack to the school party. The child feels a bit left out from the festivities.


    A parent who knows a child will "go crazy" after ice cream and but takes her for a "treat" before an extra-curricular activity. The child is reprimanded for inability to pay attention during the activity.

Sooo... Whaddayathink? Both? First one? Second one?

For many parents and grandparents, one of the hardest things about this diet is giving up "treats" as the children have known them. No more technicolor goldfish. No more snack bags. No more special trips for ice cream. No more juice boxes after a soccer game. Giving back "goody bags" at a birthday party. You get the idea.

As a parent / grandparent, should you feel sorry for the kid? Do you feel like the "bad guy?" Well, you can but that is a pretty pointless use of emotional energy. If a child needs to heal a child needs to heal. YOU are not doing anything TO him or her. YOU are doing something FOR him or her.

This is a context that generally bothers a parent / grandparent during the early months of being on a special diet. However, if the diet is REALLY working and provides consistent evidence that the child truly needs the special / restricted foods the parent / grandparent will gradually find their context of "normal" shifts slowly over time.

Lest you think my context is perfectly shifted, I too have been recently guilty of wanting to be the "fun" parent. Just the other weekend we were at ZiZi's school party and they had the most *amazing* farm-fresh apples. I threw caution to the wind and let each of the girls have one. This was cruel to my daughter with the apple allergy. But it had been awhile since she had had one and it was a fun day so what the heck. Poor kid had a pretty bad potty accident at the event (one of her usual side effects) and was totally out of sorts for days. My bad.

Once your context begins to shift you will find yourself with no sympathy for the child any longer. This can actually be a good place to be. Allowing someone to wallow and be a victim is not a great way to support him/her on a healing journey. Giving the child language around the food choices that empowers him/her is the way to go. Not that I'm telling you what to do, of course.

The other thing that will happen once your context shifts is you will slowly start to notice how we have become a culture of sugar and brightly colored, "blingy" treats. The average social gathering has sugar as a main attraction. The governments have been busy fighting the war against fats, but I say bring out a bucket of fried chicken for the kids instead of some unnatural shade of bright blue cupcakes. Their minds and bodies will be better for it. It is as if we don't "really" believe that sugar (and the crazy food colorings + additives) cause problems for anybody. Kid has a birthday at school? Celebrating the last sports team gathering? Holidays? Book fair? Bring out the inflammatory substances and add a side of hyperactivity to it just for fun.

Once your context has shifted, you will start looking around and feeling really, REALLY sorry for many of the children around you. They are being poisoned by the adults who love them. Many, many of them are eating so many prepackaged treats that you have to wonder about the chemical cocktails they ingest every day. Not to mention the sugar, which is added to EVERYTHING. Even bacon. Sometimes when I see those kids it feels a little unfair that my sweet babe eats the cleanest foods and still struggles to learn her letters and numbers. But time will tell and although it will take Zi awhile to catch up to her peers, she will catch up. The kid sucking down a blue colored, genetically modified high fructose corn syrup laden "energy drink" at age five... We'll just have to see how it goes for him.

Friday, October 28, 2011

Mary Katharine's Story

Our family started the GAPS diet after a string of events that started with our 2.5 year old daughter suffering a severe eczema outbreak. As a baby, I could tell that she was milk intolerant. While breastfeeding I eliminated all dairy (except my beloved cream in my coffee) and things improved. She had a rough go of teething and I ended up nursing much longer than anticipated, to 2 years old when I became pregnant with our 3rd. She was always very verbal, very precocious for her age, petite, and a little stick of dynamite! We joked that she never walked anywhere, point A to point B was always a sprint, even if just 2 feet away.

Thanksgiving of 2010 she was hit with a bad upper respiratory virus. Certain it was pneumonia; we went to the KidMed the night before our flight to visit family. It was just a virus, we were sent away with a nebulizer, some steroids and the all clear to travel. She did have some GI distress with the virus as well. She got better, but she did not feel well and was not herself for at least 2 weeks. During this time she ate and drank little.

Once recovered pre-Christmas and Christmas festivities were in full swing and we were eating like our lives depended on it. Sippy cup upon sippy cup of Horizon Organic Milk were flowing (we introduced cow’s milk to her upon the recommendation of our pediatrician at one year and she seemed to tolerate it). December came and went, January arrived and as we were getting back into the swing of things the eczema started. First in the creases of her arms, then the legs, then the chest…this is when I knew a dietary intervention was needed. We pulled the most obvious, all dairy and soy, first and things improved significantly but still lingered.

I would notice little skin flares after eating certain things. We saw a Naturopath and had the enzyme intolerance test done. She and I were both intolerant to potato and the sugar-fruit combo. Huh? Potato? Based on her blood type (o), the ND recommended a grain free diet as well. So now we are *basically* grain free except the few on the legal list like rice. Again, things improved but still lingered. She was easily potty trained at 2 years old,but now she was having early morning bm’s in her diaper. I was getting an up close and personal wake-up call every morning and let me tell you, it wasn’t pretty. Things were holding steady enough, I was about to have the baby, luckily my mom stepped in to cook and adhere to our current eating plan for now and in the back of my mind I was thinking that next I would pull eggs. What in the world was she going to eat?

Fast Forward to me “taking back over” after our baby was born. I was shocked at how the digestive situation had really declined. I was hearing about the messy poops from the family members but now seeing it with my own eyes really made me worry. She was clearly not digesting many foods. Some research led me to learn that she was having malabsorption issues. A checkup at the pedi showed she had dropped in weight percentile, nothing to worry about yet, she is petite, but something about that didn’t add up for me.

I had heard about GAPS from Kati about a year before, was abnormally intrigued by the whole thing yet stayed at an arm’s length because man, that diet is CRAZY! The whole time it was in the back of my mind though, and somewhere in the midst of all this I read the literature and just knew this was the only solution. There is an example in the book about 3 generations of women and their “ailments” and it was our EXACT situation. It could have been written about us. Nobody has any major disease, yet, but all the little quirky things could be chalked up to “leaky gut”. Since MK’s issues started so early, I knew we had to reverse things now to save her from years of lingering health problems and likely a full blown autoimmune disease.

The final straw was when the new baby had a quick and fast reaction to me “going off the dairy wagon” one post partum weekend with pizza and who knows what else while I was at it. His stool immediately changed. Another kid milk intolerant. Clearly they are all getting this from me. Me and all the crappy processed dairy I've consumed over the years.

We started GAPS intro in August 2011. The first 2 weeks were ROUGH. My son and daughter did the intro, my husband played along for the first weeks and was a big help and I started strict full gaps. They starved themselves, they puked, they lay lifeless on the floor napping and sleeping. The detox was intense. We psychologically tortured my poor mom who was in town to assist me. Then they started eating, quit fighting the broth and acted like pancakes made of squash, egg and nut butter were the best things in the whole world.

I started my 6 year old son on the program at the same time because he was also dairy intolerant but his symptoms manifested in different ways. He was chronically congested,generally fatigued and craved sweets, I mean CRAVED to the point that it was very frustrating. I had the same cravings and according to the GAPS literature if one child has a GAPS condition it’s safe to bet any siblings do too, they are just presenting different clues.

Shortly after intro we learned an important piece of the puzzle for MK. She had/has a yeast overgrowth in her upper GI tract. Our new pediatrician (yep, I switched) saw this in the back of her mouth at her 3 yr checkup. She prescribed Nystatin. I gave myself 3 weeks to try a non-pharmaceutical alternative. We saw immediate results in her digestion. Immediate. Things are consistently “normal” with her digestion and elimination. She’s put on 3 lbs in the last 2 weeks. Maybe she’s not supposed to be petite? We’ve had a couple setbacks here and there but trend is definitely in the right direction.

My son looks MUCH better, has better color, much better energy and his sweet cravings are completely gone. A piece of fruit is now a treat in our house and they enjoy it so, so much. We have months ahead of us but I am confident that following this approach will get us to where we want to be. My husband has even noticed things in himself from “sort of” following the diet with us. Like Kati said, the guys are reluctant to give up the beer J Who can blame them living with these crazy,driven, problem-solving, operating without a medical degree, self-diagnosing
crazy women?

Looking back, I know exactly how we got here:
  1. Various food intolerance in me, passed down to the kids. They should have never
    had a sip of cow’s milk and it wrecked havoc on their bellies.
  2. MK had several early ear infections, treated by antibiotics.
    I did probiotics, but not therapeutically and probably not each time. I remember the pediatrician told me they generally don’t recommend probiotics until the second round of antibiotics in the row. *growl* I knew better. After the 3rd EI, I saw an ND who helped us get on a non-pharmaceutical regime for fighting colds and EI’s and (knock on wood),
    we haven’t had one since.
  3. Lots of shots. We did a staggered schedule, but she still got them all. Lots of shots
    on top of a compromised gut, even just from food intolerance, are not a good idea in my opinion. ( There is definitely some science to back that up too).
  4. She had a horrible time teething. I put A LOT of stuff in her mouth. 95% homeopathic, but
  5. Gave her cow’s milk at 1 year old, seemed to tolerate but I’m convinced by long term breastfeeding held off her body from having an immune system reaction. She was protected until I quit making the antibodies for her.
  6. She got the flu mist last fall. I have a feeling this contributed to the yeast growth and/or healthy flora suppression in her mouth and throat.
  7. The Thanksgiving virus and GI distress further damaged her gut wall, making her very, very
    susceptible. Pour on top of a susceptible gut normal Christmas eating behavior and voila, eczema, the first sign of what was to come. If left unaddressed, what is next to come? I am finding that just in my circle of friends there is a huge link between baby/toddler eczema and ADD, ADHD, learning delays, asthma…yet all can be avoided with just one
    simple thing. The right food.

In reality, we are lucky to have caught this so soon and that our current symptoms are physiological (although I have seen a DRASTIC improvement in behavior, focus and drama). I figure this crazy cooking and living in our weird food bubble for a brief time is a small sacrifice for setting up a lifetime of good health. Also, by eating more cleanly my husband and I have noticed food intolerances in ourselves that we would have otherwise ignored or not attributed to the gut. I’ve known I was due for a big dietary overhaul for a while now and was even discussing recently with a vegetarian friend that I could see myself going that route. I have to laugh about that now, I couldn’t be on a more opposite end of the spectrum with GAPS! Thank goodness I didn’t go veggie, that would have only worsened my particular intolerances. Not to say a vegetarian diet isn't perfect for some, it just wouldn't be the best for me at this moment.

I do worry that at some point they’ll end up in the same shrink's chair as Kati’s kids, talking about how “I had avocado as a snack at school while the rest of my classmates at goldfish, I was so left out” and “my mom made me eat soup and I hated it”. Oh well, time will tell!

PS: We have always been healthy eaters! We were not eating the SAD
(Standard American Diet) or even close. We did fall victim to convenience foods and that’s where we are all just screwed at the grocery store. Just because it’s “all natural” or “gluten free” doesn’t mean shit. If it’s in a box or a package, don’t eat it.

Thursday, October 27, 2011

Maddie's Story

Maddie is a beautiful young girl who has stolen my heart. Maddie's mom, Janice, is a friend of friends and now a friend of mine too. We initially connected via our mutual friends because they knew what I was doing to help recover ZiZi and couldn't help but wonder if it might help Maddie as well.

Maddie is almost five years old and has been diagnosed with autism. She is non-verbal and usually when she is at my house she wanders around, mouths on things, sometimes eats chalk, and does not interact much with the other kids. My oldest daughter, Ani, tries pretty hard to get Maddie's attention and I remember an early visit when Janice was surprised that by the end of the visit they were seated together. Apparently Maddie usually shied away from that sort of thing. But Ani has a way with people and like her mama doesn't always take "No" for an answer.

I met Maddie and Janice when we were in the "biomed" portion of our recovery. We were on a ton of supplements and spending a lot of money on labwork, but we were getting some noticeable results. I passed along anything I learned to Janice. At that time I talked to Janice about a gluten-free, casein-free diet and the importance of giving kids real food, not prepackaged snacks. That first step was a lot of work and Janice has three other children and a husband who need time from her as well.

Then our family started SCD / GAPS. It was a wonderful change for ZiZi and her communication skills skyrocketed. I started talking to Janice about this dietary option. I couldn't help but think that Maddie was "in there" in her brain and all we needed to do was unlock her so she could tell us what she was thinking. I said this out loud to Janice once when they were over and Maddie stopped her random bumping around. She turned and looked at me and stared into my eyes in a way that gives me goosebumps even now when I think about it. It was like she reached right out and grabbed my soul. I felt bonded to her after that day.

So I called Janice every now and then and checked in. I would not let go of the idea of Maddie on this diet. I was probably the crazy small, cartoonish dog hanging onto the back of her pants. Her life was intense and she had a lot of people who needed her. Her mom had a surgery. Her father passed away. Life was really tough. I felt so trapped in my own kitchen that I couldn't offer much. All I could really do was just let her know I cared about her and her daughter.

This summer, when all the dust had settled, I told Janice we needed to give it a shot. She told me that some professionals she trusted had told her that diet wouldn't do anything. I countered that there was no down-side to feeding her daughter really healthy food for a few weeks to see if it would help. The wonderful thing about this diet is that there is not much "risk" or down-side to giving it a shot. Particularly if you begin with the full foods menu rather than starting with the dreaded intro.

So around August Janice made the switch. It has been almost three months and although Maddie occcasionally gets some foods that are not allowed on the diet her mother is working like a maniac, trying to make sure she has what she needs.

In the past three months Maddie has begun to pay more attention to people and to her program (her school and therapy exercises to help her learn). She has even become more aware of her surroundings to the point that her feelings are occasionally getting hurt now, for the first time in her life. This emotional capacity is a very big milestone.

Maddie is also no longer pulling hair. This had developed into a big problem over the summer and her mother had to leave the park more than once because of it. Maddie is much less agitated and aggressive. She is now more affectionate and seeks hugs and kisses. She wants to play with her younger sister and they are able to laugh together.

Maddie is listening to the requests from her parents. When they say, "Come here" or "Sit down" she is focused on what they say and able to react appropriately. Janice called me a few weeks ago thrilled that she had told Maddie her burger was hot and to blow on it. She said Maddie looked her in the eye (like, "Got it, Mom!"), turned to the burger, and blew on it. This may sound like a small thing but it was a big change.

Maddie is also initiating communication via sign-language with her family members. She is able to communicate her wants and needs which is a massive breakthrough. And last, but not least, yesterday she used the potty for the first time.

Maddie's improvements are noticed not just by her family but also by friends and her therapists. The only thing that has shifted in her routine is her foods. Her body craves the healing broths. She happily eats sauerkraut and meatballs. Her mom, like many of us, can barely make it out of the kitchen long enough to take care of all the other things that need to happen in a busy household. But somehow she holds it together and dares to hope for what the next 6-12 months can bring for Maddie. Janice is my kind of hero. She may not be honored at some charity gala this year but one day she will have the sweetest reward of all. One day, I dare to dream, Maddie will tell her mom that she loves her. Out loud.

Elevator Speech: Our Healing Diet

When we were preparing for our healing diet I took advantage of a couple of my girls' twenty minute epsom baths and spent that time drawing diagrams of the human digestive tract. We talked about intestinal villi, enzymes, food molecules, and that sinister villain, "the belly bug."

I don't always have an opportunity to speak to a captive audience (particularly in my bathtub) so over the past 15 months or so I have perfected my elevator speech for people who look at me questioningly as I pull out the cooler at a birthday party or picnic. I have found that it is best to generally stick to the science behind the diet and not get dragged into any of the reasons we are on the healing diet. Our diet can be boiled down to this in a nutshell:

Point #1: The human body runs on fat, protein, and carbohydrates. The bacteria in our gut utilizes the carbohydrates for energy. If there is a bacterial or yeast overgrowth the carbohydrates will continue to feed them.

Point #2 There are three main forms of carbohydrates (technically there are four but because I use the word "main" I am not going to split hairs on the difference between an oligosaccharide and polysaccharide):
Monosaccharide (think of this as a ball)
Disaccharide (think of this as two balls with a bar between them)
Polysaccharide (think about many balls strung together in different shapes, mostly long lines but also circles and star shapes)

Point #3 The human body can immediately use the single ball / saccharide without any sort of enzyme action or digestive process. The disaccharide must be split into to saccharide molecules before it can be used. The polysaccharide must be split, and split, and split, and split (you can keep going for dramatic effect). Unfortunately, some people have a deficiency in digestive enzymes to aid digestion of the disaccharides and polysaccharides.

Point #4 Anything your body is unable to digest and use will pass through the body. The carbohydrates you were unable to digest and use make wonderful food and energy sources for gut pathogens. To starve out the gut pathogens and allow for maximum healing our family avoids disaccharides and polysaccharides until our bodies are able to more easily digest them.

Point #5 This is a healing diet and after the healing is complete (six months past the last symptom) we will add back wholesome foods to see if our bodies can digest them.

From here you end up at a decision point on whether or not to go any further or tell any bit of your healing story, a friend's story, or whatever. Hopefully you read social cues well and are looking at your listener for those cues. Sometimes it is helpful to take a deep breath and wait for their social cue. I mean reaction.

If your listener has the slightest bit of interest in the science/background:
The basis for this diet is called Specific Carbohydrate Diet and it is the original diet from the 1950s/60s for celiac disease. It has historically been used for ulcerative colitis, IBD, IBS, Crohn's disease, and celiac disease. These days it garners a lot of interest and support for healing children from autism, ADHD, allergies, and asthma.

If your listener asks for a recommended book:
Recommend Gut and Psychology Syndrome by Dr. Natasha Campbell-McBride. All the other books do not explain the science well enough and do not draw all the parallels to the variety of ways this gut condition can present neurologically. Even if you send someone to check out SCD, this is the better book to read.

If your listener asks for a website:
If s/he is associated in any way with autism the is the easiest place to start. It is an SCD website but tailored very heavily to parents of children with autism.

If s/he is just asking in general then I would usually just suggest the GAPS website as a starting place:

If your listener asks for a video or doesn't want to read anything:
Here is a worthwhile 90 minute video of a presentation by Dr. Natasha Campbell-McBride.

If you can perfect this short elevator speech you may find greater levels of support and a little less eyeball rolling. Some people are haters and are going to be eyeball rollers regardless so don't take their dysfunction personally (I never do). The vast majority of people, however, tend to be curious and generally want to be supportive.

It really is pretty simple. It is about the physiology of our digestive system and giving it time to heal before going back to a life of sourdough bread and gnocchi. Which, by the way, I hope to go back to one day.

Tales of an Intro Past

At this point I have watched, assisted, and supported a number of mothers putting children through a formal "intro" for SCD / GAPS. There are a few consistencies between all the stories and they, strangely enough, match up pretty closely to an addict going through detox. I had never put that together until I was on the phone with a mom listening to her daughter scream, "I want pizza! I want pizza!" in the background. Her mother had a spine of steel and told me that she and her husband were both familiar with the cycle of addiction (from the professional assistance standpoint) and that she considered her daughter's behavior to be that of an addict.

Her comment really opened my eyes. I started thinking of the kids on intro a little differently than I had previously. Of COURSE their stubborn holding out for the old foods was addict behavior. Also, many of the kids got sick and vomited on intro and the reasons given were always: detox, yeast/bacteria die-off, or low blood sugar. I had previously assumed that low blood sugar was the biggest issue but what if it was more frequently toxins / detox?

So I started thinking back to some of the kids who had been on dietary "upgrade" journeys. The most severe detox reaction came from a beautiful young child with autism. Her journey toward GAPS was a long and slow one and there were many steps in between her previous diet and getting to 100% "Full GAPS" (she has yet to do a formal intro). One of the first phases of her journey was when her mother removed additives and preservatives from her diet. She screamed all day and all night for a week. She was nonverbal at the time and was unable to tell her mother how she was feeling but obviously she was not feeling okay. The detox from simply removing additive / preservative chemicals was intense. Today, when this same child has an infraction on "Full GAPS" she writhes on the floor in pain or is "off" for a few days while the offending substance clears her body.

My girls threw major tantrums when we first went on the diet. OK, OK, me too with my knife throwing incident. Our issue was the toxins from yeast/bacteria die off. Luckily for us we had been on a very clean diet for awhile before starting SCD and there wasn't any vomiting. For Stacylee the intro period was very, very difficult. The most severe I had witnessed up to that point. She was lethargic, pale, losing weight, and vomiting. Her mother was very scared. Stacylee came to our home on day three when she was vomiting and again on day six. On day three her presentation didn't seem too bad but by day six she needed some FOOD. She did start eating that day, but what parent thinks it is "OK" or "normal" for their child to vomit for days on end before being ready for food?

Because the intro is SO tough, scary, and lonely many people advise going onto the full diet first and then going back to the introductory stages after awhile. The double bonus is that whomever is doing all the cooking can get used to the new ingredients list / ways of cooking and stock up on ferments, broths, and veggie puree before beginning intro. The other thing they can stock up on is love, patience, and support. They have time to educate those around them and get them used to the changes.

Other parents feel pressed for time or are just "dive right in" kind of people. With no stock or ferments in their pantry and with family/friends who have no idea of the big changes ahead, they just get started. Those who find out what is "going on" may question whether it is necessary or healthy. Hopefully these chefs are doing intro hunkered down for two weeks or so behind closed doors because if their child is one of the kids who needs it the worst their child will go through detox the worst.

It is a long, soul crushing road but well worth the results achieved and the chef is generally rewarded very, very quickly. Here is a Facebook post from today - the little boy has been on intro for only two weeks:

[Name removed] has stopped 99% of his head-shaking... this is a form of self-stimulation done by people with "high-functioning" Autism. He's also stopped spinning and running around in circles and obsessively throwing himself against the glass sliding door whenever we get done singing the song he likes from "Wee Sing."

That is quite a change for just two weeks. Healing and sealing. Heal the gut, seal the gut, heal the brain. Soul crushing road, but worth it.

Soul Crushing Days

I like to refer to the first stages of SCD / GAPS, commonly referred to as "Intro," as soul crushing. I do not say it lightly because intro is really tough. Really, really tough. And soul crushing.

It is tough on the cook (usually a mom) because all the food must be made in the home. From scratch. Nothing from a bottle except perhaps coconut oil / olive oil. Nothing from a box. Whether or not she knows how to make everything from scratch. No premade anything. It is intense.

It is tough on the patient (usually a kid) because their former favorite foods are almost guaranteed NOT to be allowed on the diet. What will they eat during intro?
Lots and lots of broth
More broth
Soup if mom is sweet and adds veggies to the broth (extra work)
Boiled/broiled meat
Perhaps a bit of cooked fruit (on SCD intro but not on the early stages of GAPS intro)
Perhaps some fresh pressed juices
Cooked vegetables (but not old stand-bys -starches- like potatoes and sweet potatoes)
Sauerkraut -- lots and lots of sauerkraut
Oh, and cod liver oil too

So, isn't this something you are EAGER to do?

For many of us who put young children on this diet, particularly young children with feeding challenges and neurological conditions, intro is what leads to liberation. Liberation from the daily challenges of coaxing a child to eat a little more (insert healthy food here) before they can have (insert treat or favorite food here). If all goes well, it also leads to liberation from a multitude of worries. When the brain begins to be nourished it is a game changer.

This time on the diet boosts healing and is a wonderful step to quickly seal and heal the gut. It is so effective that some people voluntarily go back to intro a second or third time for an extra surge in healing. Intro is also the time you can "break" a child's willfulness when it comes to food. For that reason alone I would encourage anyone with a very picky eater to consider an intro boot camp.

Changing a child's eating habits is a daunting task. They will cling to their favorites for as long as you let them. They will self select down to the least nutritious foods possible if you let them. If you start intro before doing the full diet, you will find that it is the time period when parents become the parents and children become the children. There is no confusion of roles and the child *knows* instinctively they have no control over the situation. Your child's personality will drive how long it takes before they succumb to this new truth. This is especially fun if the patient is your husband and you have to break his will too. My husband has not yet signed up for intro, perhaps because he knows I can be meaner than a marine. Intro takes a spine of steel.

For the kids who have some sort of "autism" symptoms, the feeding challenge can be even more intense because those kids can be SOOOO stubborn. Some of them have brains that want things to be the same way all the time and when you change something it is a HUGE deal to them. Tantrums can ensue. Or worse yet, a food strike.

However, it is worth every difficult moment because correcting a child's nutritional deficiency is THE answer to so many issues for our children today. Child not talking? Might be nutrition related. Child eating dirt? Definitely nutrient related. Child not growing very well? Definitely nutrition related. Child cannot sit still? Check those sugars and chemicals in their food. Child seems okay but struggling with dyslexia? Yup, nutrition may play a role. Good food and good sleep are the two requirements for any child to thrive (after love, which is the most important thing). It takes a lot of love to do this for a child so the parents who are willing are some of the most amazing, loving people I know.

Wednesday, October 26, 2011

The Proof Is In The Placenta

For reasons having to do with the title of this post, this will have to be an anonymous posting. So, I have a friend who...

I have a fabulous friend who is very quiet about what she does with her family's diet. She is not out to convert the non-believers. She mostly sticks to her own business, tends not to talk too much about what she is doing for foods, and just supports people on their own personal food journeys. Happy to ask questions / answer questions but definitely not into converting people.

But it is a funny thing about leaders and leadership. Sometimes the quiet leaders move mountains. This is how I feel about her. She is the kind of person who made the decision to go on GAPS not out of desperation (as I did) or a well researched decision (as other friends did) or even out of hope after witnessing someone else's recovery (as still other friends did). She quietly read a book, considered the situation, and decided it just made sense and she would give it a try.

So during this quiet journey she was pregnant. I cannot remember exactly how pregnant when she began the journey but she was craving cheese if I remember the story correctly. So she began a "Full GAPS" diet for herself. She was open with the local midwife about what she was / was not eating and the midwife was mostly supportive but a little concerned.

Can you blame the midwife? I mean, how do any of us know what this diet will do? How do we know what is best for the baby? Is there a controlled test for pregnancy and GAPS? Of course not. So my friend, who was feeling better on this diet than she had felt with either of her other pregnancies (and keeping up with two young children, no less) paid more attention to her body than to the advice of the midwife. She read the book and believed the science, but mostly she just wanted to see where it led her since she was feeling good.

Our local midwife expressed concerns with her low weight gain toward the end of the pregnancy. My friend just stuck with "Full GAPS" because she was experiencing improved health and well-being. She did add some extra fruit and honey at the midwife's suggestion so she might gain a little extra weight at the end of the pregnancy, but otherwise she stayed on the course she had already charted for herself.

Then one day, her beautiful baby boy was born. He weighed a little over eight pounds. And then she delivered... the placenta of a lifetime. The midwife later commented that the placenta was one of the healthiest she had ever seen, and was thus deeply reassured that whatever this diet was doing was an awesome thing for this mama & baby. This from a midwife who has practiced for decades and seen thousands of placentas, is seriously worth noting.

Since then our midwife has had the opportunity to see three babies born while mamas were eating GAPS or mostly GAPS. All three babies are their mother's third child. As a friend of each of these women I myself cannot help but notice how large and healthy these third babies look. They have chunky thighs, big appetites, and are hitting all their milestones. In contrast, the second child for two of the women both had some health issues, some evident from a very young age. So it is remarkable to me that each of these three third babies are so healthy and large. Did I say large? One baby in particular is astounding to me, considering how tiny her two older sisters were when they were babies.

So the moms eat a lot of GAPS foods and fats and breastfeed their gorgeous beasts for babes. Lots of coconut product is being consumed and loads of egg yolks are being given as first foods. I will twist some arms soon for a good pregnancy round up + egg yolks to enhance language development posts!

But let's get back to the placenta. I'm not sure we gave it the attention it truly deserves.

There should really only ever be one particular opportunity for a woman to examine an internal organ and that is after delivering her placenta. It is the one organ that is expelled and just begs to be picked up, stretched, searched, and otherwise checked right after the baby is born. Women who are *really* into birth tend to be really into their placentas. Some people rub herbs into their placenta and leave it attached to the baby until it naturally falls away. Others encapsulate it and take it as a post-natal vitamin. Still others stick it in their freezer and throw bits into the blender for a super-health shake. I consider myself on the slippery slope to tribal but my second placenta is planted under ZiZi's special plant in our front yard and the new owners of our home next year will never be the wiser. But I digress...

It is said by experienced midwives that the health of the placenta is a good indicator of how well the child was sustained in the womb. If the placenta degrades upon expulsion, that kid barely made it out into the world with what he or she needed! Other times the placenta looks really healthy and the midwife may joke that the baby could have stayed in another week or more being nourished by that special organ.

So when a midwife says, "That is one great looking placenta," my ears perk up. This is important evidence to be considered and analysts are nothing, if not interested in analyzing the evidence! Our midwife's interest has been piqued by this evidence and hopefully we can begin a dialogue so that pregnant mothers in this town might eat healthier and deliver healthier babies.

In a somewhat related nugget of wisdom I was reading a neat passage to my oldest daughter a couple of weeks ago about how the Romans would decide whether or not a particular area was a good spot to build a town. They would kill a rabbit and check the health of its liver to determine whether the animal was healthy.

So if you use that sort of logic and consider whether or not the GAPS diet is a healthy one for the animal we call human beings, in our small population sample I believe the answer overwhelmingly is "Yes." Yes, you can grow fabulous placentas on this diet. Yes, your baby can be delivered at a wonderful, healthy size. Yes, you can breastfeed a baby and grow him or her to a wonderful, health, large size. And oh those chunky thighs. People will love to squeeze them. I'm talking about the baby's thighs...

Our Science Experiments

Let's get really honest with ourselves. Looking in the mirror naked level of honest with ourselves. Raising children is really a science experiment, whether or not we want to call it one.

Some friends and I joke about the fact that our children will definitely end up in therapy, blaming us, at some point. We just hope it's for a perceived slight and as a feedback step in their maturation process. You know, something like:

My mom never let me eat sugar and now I find myself unable to stop dreaming about lollipops. She also kept me from eating grains and I will only date men with tractors and large fields of wheat. And oh, the potatoes. I am an artist and will only do ink stamped paintings with potatoes. I am obsessive about these things and cannot quite shake it. Do you think the Specific Carbohydrate Diet / Gut and Psychology Syndrome diet could have done this to me?

Well, I've put that fear to rest. Besides, there is a great article at The Onion telling me I'm doomed anyway. LOL! I am loving these children with every pot of stock I make and I hope that by the time they are teenagers they will make healthy food choices that support their bodies. They will be out on their own and you cannot control teenagers anyway (well, without some sort of hellish payback when they turn 18 and leave the home and run off with... let's just not think about those poor kids). So we talk about the science behind the healing and about the choices and outcomes. Once we had a huge histamine binge (watermelon, cherries, pork, avocados, sauerkraut, and more -- all in one day) and when they were itchy and losing their minds I was able to link it together and point it out to them. My youngest still looks at me a little funny sometimes but her older sister knows there is a method to the madness and a reason we are doing it.

As the girls begin to feel better and we meet other families healing themselves I notice, with particular interest that although the sample population is small, the results are 100% success in moving toward improved health. It does not mean that everything will be fixed via this diet, but the evidence is overwhelming that even given a short period of time there is improvement. Over longer periods of time the true healing can occur.

So now I sometimes find myself dreaming of a fantastic science experiment to prove that the SCD / GAPS diet is more successful than any other intervention. One that would divide a class of children into two groups and provide support to the GAPSters as they made the changes. For three months only one group of kids would be on the diet and at the end of the three months if the other families wanted to move to the diet they could do so. Wouldn't it be amazing if half the class was suddenly "coming alive" and the other parents couldn't wait to join the progress?

In researching autism spectrum and helping my daughter and other mothers, over time I have come to believe that for many children today what it really is, is a diagnosis of malabsorption and strange nutritional deficiencies. Add certain amino acids, the ticcing / stimming will stop. Get a kid the minerals he/she needs and the pica will stop. Decrease inflammation while supporting a child's body nutritionally and the language will explode.

You are what you eat.

Note for professionals who tell parents otherwise: Please come visit my home. Please speak with my child's teacher. Please drink two bottles of wine. Please try to pass a sobriety test. Then let's talk about how what you put in your mouth can and does affect your brain.

Gradually, we Americans are turning into a pile of toxins and cross-contaminated, genetically engineered, industry by-products masquerading as food. I call it PHood. As in. PHuey!

While I don't think that diet alone will take care of every child's needs, it is the place to start. Until you simplify a child's diet you cannot uncover the problems with the system versus the problems with the fuel in the system. It is the basic logic behind a controlled study. Control your variables so you can see what is actually changing.

In a scientific study you want a control group so you can compare the outcome of the group being studied to a "normal" population. When you are talking about a complex system like the human body, one that is unique to every individual, it is impossible to have a true control group. Its the reason we start with rats, conchs, or fruit flies. Simpler systems yield (supposedly) a greater ability to control variables.

With a set of neurological symptoms like autism, autism spectrum disorder, or ADHD every child experiences it a bit differently and has slightly different neurological symptoms. Not only that, but their bodies are different, their blood chemistries are different, and the same foods cannot necessarily be tolerated by each child. So how could you do a study with these kids?

I think the control has to be time. This way you could compare "normal" as the time before you introduced the change. Same system + different external / influencing factors at two separate times = controlled study. It seems to be the best control for this situation given the complexity of the system you are trying to control and the degree of difficulty in observing the progression of changes when only some of the symptoms are neurological.

Eventually our support system is going to cave under the pressure of all the children that need intensive therapies and the parents and medical community will be motivated to find another route to help the children before they are three years old. For many of them there were early warning signals - shots fired across the bow of the medical establishment. But nobody wants to talk diet and if they do dare to talk diet they tend to use general terms like gluten-free or whole foods (if you are lucky). My greatest hope is that in time our medical community will come up with a new diagnosis that reflects the root cause of the issue rather than just the neurological symptoms. That way it will not be "standard" to wait until a child is three to give an official diagnosis. If the root cause is found to be a digestive issue or a problem with the food given to the child and how that food interacts in his/her system, that is something that is present and available for diagnosis from a very young age.

One day we will all embrace the little, cuddly science experiments we call children and learn to read these early warning signs and symptoms. I almost feel sorry for our pediatrician because although I could go in and present the growth chart progress (or lack thereof) from when ZiZi dropped from the 75th percentile to the 3rd percentile in height and the 75th percentile to well below the 3rd percentile in weight, what would she have done differently? Few pediatricians know anything about this diet and even fewer still would dare to mention it to a parent. It is extreme parenting and the failure rate in the first week is high. But for those who make it past the first week the success rate is even higher. Many parents call this diet their most important and successful intervention.

We parents who have had these extreme experiences must go back to the pediatricians and to the medical establishment in their own form (studies, conference speakers, whatever) and give them new tools. Ultimately, if enough kids continue to have these issues and cannot handle the processed toxins we call PHood perhaps industry will even be motivated to join our science experiment rather than keeping us hostage in the sick experiment they have been conducting for a few generations. Their experiment is not going well. But the clean foods experiment is going very, very well.

Secret Sniper

My husband has a secret sniper that comes out occasionally when things are not going well. I believe he calls in the sniper when he is under stress or feels as though I need him to play a stronger "devil's advocate" role. Regardless of the cause, I sometimes find myself running for cover from this unexpected and unwelcome visitor!

Our older daughter has not thrived on this diet as much as our younger daughter. She does not seem to get quite the same upticks as her sister. She will show a mild improvement or nothing at all when we layer in something great, like liver. She continues to have "poo" challenges (sorry babe - hopefully this isn't still floating on the web when you are 16). We sometimes waffle on whether or not this is the only thing we need to be doing for her. We sometimes still argue on the approach.

My husband has remained mostly on board but not totally on board throughout our dietary adventure. His secret sniper continued to pop up and take shots when I least expected it. Even when one of the girls was very obviously thriving. Finally one day when we were arguing I told my husband that until he read the GAPS book / watched Dr. Natasha's speech I was no longer going to argue with him. He was arguing from an emotional point of view and I was trying to counter with science and research. It wasn't working.

So he watched a video of Dr. Natasha Campbell-McBride and began to read the book. That day he met me at the door and told me that I needed to figure out how to do this on a bigger scale because so many children have terrible gut flora but, "How are mothers going to be able to do this?" He was finally on board.

But then a few months go by and we have a setback (or regression). Again the questioning. His back and forth antics were worse than Brett Favre deciding whether or not to retire. Not knowing whether we are on the same team on any given day is stressful. Judging by the many yahoo group conversations, plenty of moms doing SCD/GAPS for their children have this same conflict. Sometimes the men do not see there is anything wrong with the child anyway. They may say things like, "Don't worry so much. (S)He will grow out of it." Mamas *know* when something is wrong, but putting it all succinctly into words and convincing a husband is a skill many of us have not quite mastered. So there is conflict.

On a good day, when the sniper is on vacation and not available, my husband will say wonderful things like, "This diet works and is something that only a mother would be dedicated enough to do. It works, but dads just wouldn't do it." Those moments make me realize that he understands the difficulty and how deep the love goes.

Today my husband is mostly on board. There are still some challenges, particularly for Ani, that we will pursue. I keep thinking if I can support their bodies a little better that it would aid the natural healing process. Wouldn't it be great to be on GAPS for only 2-3 years instead of 4? Perhaps it is really a deep patience and trust we need to develop while we wait for the bodies in the family to heal.

Tuesday, October 25, 2011

Stacylee's Story

Stacylee is a gorgeous, spunky, red-headed 4.5 year old that was diagnosed with autism (low to moderate level autism) when she was three. She has speech delays but is verbal. She has some motor planning issues and is a sensory seeker. Her strength is her physical coordination and strong will. Her other strength is an exceptionally committed and loving mother, Kelly, who keeps Stacylee's recovery a priority even though the dietary commitment is extremely rigorous. Kelly is a single mom who works full time and is involved in a local leadership program. Kelly reminds me of the saying, "If you want something done, ask a busy person."

In late June, Kelly did what she calls "SCD bootcamp" where she broke Stacylee down and built her back up. Prior to SCD, Stacylee was in constant motion and had very little attention span. Attention boosting drugs were suggested but mom thought she would give one more dietary intervention a try (Stacylee was already GFCF prior to going on SCD) first. The die off was tremendous.

Poor Stacylee was sick, lethargic, and vomiting off and on for the first four days. Kelly was very scared for her and tempted her with all kinds of wonderful SCD intro foods, but Stacylee just needed time for her belly to heal. Her body's intuitive wisdom told her not to eat. On day five Stacylee was no longer vomiting but was still not eating foods. On day six Kelly was very, very worried and took Stacylee to a local pediatric emergency group and happily discovered a very supportive doctor. Kelly explained that the food was being made available but Stacylee seemed to be starving herself.

The doctor told her she was doing a great job and to stick with it. He also told her (and I now repeat this advice to parents with a sick kid on intro, almost as a mantra) that as long as Stacylee remained well hydrated, most kids can go a couple of weeks without food before it becomes an emergency. Not that any of us ever wants to see a child refuse food for a couple of weeks, but it is good to know there is some leeway in the beginning of this diet when the kids refuse to eat! With his words alleviating her worry and some extra encouragement Kelly doubled-down and forced Stacylee to eat. She used Applied Behavior Analysis (ABA) therapy techniques to coax her into eating broth, chicken, and butternut squash.

Despite Stacylee's all-time low when she did not have the strength to physically walk to bathroom and had to be carried, the words began pouring out with remarkable clarity. Somewhere around day six or eight she said, "I want to fly the octopus kite" when she walked past her favorite kite in the garage. Prior to SCD intro she simply said, "Octopus, octupus!" Kelly counted up the words in the sentence and wrote it in a diary. To see the language skills increase even while Stacylee was physically weak gave Kelly strength to continue.

Applegate Farms nitrate-free bacon (less than 2% sugar) was the transition object that Kelly used for Stacylee. [Just to point this out, it is *not* an SCD legal food] Bacon was used to get Stacylee to eat broth and was a staple for the first two months. Kelly put bacon grease in meatballs and provided a bacon "chaser" for vegetables and fish. She used it only as a reward and eventually switched to an SCD "legal" bacon from the farmer's market.

Once Stacylee got used to the taste of broth her body craved it. She was eating 8-10 bowls a day. Kelly's biggest fear about going back to work was that Stacylee would not be able to self-feed the broth because of the fine motor skills needed. This was a big deal because Stacylee is in a special program with other kids and was not going to have the one-on-one attention her mother could give her during those first two weeks. Because of her motor skills and motor planning issues Kelly fed her like a newborn for 15 days, but Stacylee figured it out once her mom let her. One day Kelly turned her back to reheat more soup and took too long to come back and feed Stacylee. When she turned around, Stacylee was feeding herself.

Today Stacylee's language skills continue to progress. Kelly considers SCD the most important intervention she has tried for her daughter. Kelly reports that Stacylee is more present, clearer in communication, and more verbal overall. Stacylee has always been a happy child, but now is more at ease in social situations and seeks out interaction and affection. She is able to sit still and play her iPad, choosing games and navigating choices without requesting help.

Kelly also reports that Stacylee's speech therapist and occupational therapist both noticed the difference immediately after two weeks of SCD intro. They noticed and commented on the "light in her eyes" and her increased ability to sit still for learning activities. Stacylee is more open to learning now because she can physically sit for longer periods of time and her increased verbal ability allows her to also make more choices and process faster. For example, when her OT says, "Do you want to play on purple swing or the trampoline?" she immediately gives an answer and says "purple swing." Those choices previously were painfully slow and often did not materialize.

Stacylee's physical appearance has also undergone a transformation. She has gained another 3 lbs since late June and for the first time in her life has pink in her cheeks, meat on her bones, and the purple circles under eyes are gone. Kelly's mother recently visited them for first time since Christmas and broke into tears when she saw her. She said, "OMG, look how healthy she looks!" Today Stacylee still receives occupational therapy, speech therapy, music therapy, and some basic nutritional supplements to aid her recovery but Kelly credits SCD with the biggest change for Stacylee.

These days Stacylee has also developed a sense of humor. Prior to SCD she was so literal that her mother could not joke. But now she initiates jokes of her own, telling her mom, "Bianca is a baby!" and waiting for a reaction. Bianca is their dog so Kelly says, "Noooooo, Bianca is a dog, silly!" And to that Stacylee giggles with pleasure.

Kelly credits a few critical components for her success in implementing SCD: prayer, patience, and building a support network. To build her network she talked with others on SCD and communicated with everyone who would need to help implement the diet when Kelly was not present. An old African proverb says it takes a village to raise a child. Kelly has built this village for Stacylee and continues to make important choices for her daughter's recovery.

Burn the Ships!

So, how do you start a diet like SCD / GAPS? Many people ease into it. They incorporate changes bit by bit and eventually they find themselves eating "Full GAPS" and after they have their GAPS wits about them they take the plunge into intro, the soul-sucking, will-breaking, level of hell in Dante's Inferno that it should have been.

But not us. No way. No easing in here. We went with the Cortez method of starting SCD / GAPS. We picked a date, educated the kids, and burned the ships. Nobody would be returning to the old world from our pantry!

Our local Whole Foods and natural foods stores were kind enough to take back all the boxed items. I stocked up on butternut squash at the farmer's market. I LIVED online in the SCD forums and at the PecanBread website as I learned the ins and outs of the diet. I gave away bags of things I couldn't return to the store. I think some of it is still sitting in my mom's pantry 15 months later.

I took a nice trip to Penzey's and purchased new spices. I bought fresh herbs at the farmer's market. I trapped my children in the bathtub daily and taught them about saccharides, di-saccharides, and poly-saccharides. We talked about the fact that they had "belly bugs" and that we were about to declare war on the belly bugs.

I took off a week from work and on August 1 we started. The first morning went okay. We ate some kind of weird intro foods and tried to take the kids' minds off things by having them play outside. My girls mostly ate what they needed to and nobody got sick (this is sometimes an expectation with the GAPS intro in particular). Perhaps because of the butternut squash they had enough sugars? Maybe it's because they had already been on a mostly whole foods, cooked at home diet? Who knows. The days went by. ZiZi picked at food but by the fifth or sixth day started eating with gusto. Anything. We. Put. In. Front. Of. Her!

This was huge! But I was DYING from all the food prep in the kitchen and so tired of boiled chicken. Yick! Somewhere between the fourth and fifth days I hit a wall. I have never run a marathon but I can only imagine day five on the SCD / GAPS intro is a bit like hitting the wall in the marathon. You want to quit. You must push through it.

I threw a temper tantrum. An honest to goodness temper tantrum. I was pissed that I even needed to be doing this diet - why me? My husband said something like, "Maybe it's just too much and we should stop." I know he meant that to be helpful but it felt like some weird undermining mind f***. I threw my most beloved and expensive chef knife in the sink and started yelling at him that this was the only way things would ever get better. He slowly backpedaled out of the room as though I were a wild animal and if he backed up slowly I wouldn't notice he was leaving.

So I cried. And I chopped. And I baked butternut squash. And I made it past the wall. I ended up taking off a second and then third week from work. I hit up CraigsList for some assistance - turns out you can get some help in your kitchen from a trained sous chef for about the price of a good babysitter. So we traded in our babysitting budget for a sous chef budget. But doing it alone when I travel for work two days every week was not going to work without backup. It took awhile to get it all down to a science and it was definitely a tough time.

All that aside... It was the most awesome thing we have ever done. By week two ZiZi was talking a bit more and by week four she was stringing sentences into short paragraphs. Things she had never done and development that previously looked like it would be months before hitting the milestone were suddenly being achieved. I took ZiZi to see her new classroom and her teacher, who had known her since she was four months old, was blown away by her sudden progress.

So was it the right approach to jump straight to intro? Who knows! I felt the looming deadline of the new school year starting and since I had a kid who was barely talking I thought we needed to just roll up our sleeves and give it a four week shot. It was awful, but we made it through and life hit a pretty consistent pace pretty quickly. Intro will be awful, regardless of when you do it. Now I'm just hoping that the homeopath we plan to visit does not tell us that we need to go back and redo it. But if he does, we will have to clear out all the contraband again (like honey) for the start. Because there is one really awesome thing about burning the ships. You don't go looking for a ride to somewhere else!!!

Our Diet Decision (Kati)

As I read the book "Breaking the Vicious Cycle" by Elaine Gotschall I started to cry. I knew in my heart that getting rid of the starches, sugars, and grains would be what I needed to do to heal my gut pain and help my girls to grow. I just *knew* this was the answer since the things that were not allowed on the diet were the same things that hurt my belly (and yet, that I had somehow been unable to stop eating).

My husband, however, was not so sure. One more diet change? We had already done gluten-free, followed by gluten-free + casein-free, followed by gluten-free + casein-free + corn free + soy free. Not to mention all the supplements and prescriptions the doctor had the girls on. He wasn't sure that pulling all the grains would be healthy, nor was he sure that this would be the magical answer we needed. We argued. I cried (I'm not usually a crier). He acquiesced. Maybe because of the tears? Who knows.

So with a doubtful husband we began the journey. I did a LOT of research and basically lived on the PecanBread yahoo board for a couple of months as we started. We set August 1 as our start date and for the last two weeks in July I researched, planned, and educated my two girls. Bath time should have been called "you are a prisoner while I draw diagrams of the human digestive tract" time. I cleared the pantry, restocked the pantry, and finally August 1 came and we started. The first two weeks were awful. I took more time off work. I worked harder. We *thought* we noticed a difference in ZiZi's language skills around day five. We were sure there was a difference by day ten or twelve.

I told my husband I thought it was definitely working and that I needed to hear it from him. He confirmed with, "If it hadn't been working we would've stopped it by now." Not exactly a ringing endorsement, but it was totally his style to say it that way.

For a little fun and flavor we have thrown in components of the Low Oxalate Diet (LOD) as well. Somewhere around day 20 we realized my youngest had an oxalate problem. Then I did a little oxalate research and suddenly realized that I had symptoms of an oxalate problem for a full year and had not known what it was called. Thank goodness we have the internet - where would my medical degree be without it?

In addition to layering in some of the LOD information we have also slowly moved more toward LOD meets GAPS. A friend of mine was on GAPS while we were doing SCD. I had always been a big fan of the Weston A Price research and the Nourishing Traditions cookbook prior to going on SCD. Once I read Dr. Natasha's book I realized my hundreds of hours of internet research to come to the same conclusions could have been avoided. Doh!

So our family combines SCD / GAPS / LOD and it is nothing but fun in our kitchen! The girls and I have improved, although it is never as fast as I would like. ZiZi's improvement has been the most dramatic, mine has been decent, and Ani's has been minor. Although ZiZi had the most neurological symptoms prior to the diet (and strangely, they have healed faster than her gut symptoms) according to much of our testing Ani's gut was in worse shape. So I try to keep that in mind when I am frustrated with how slowly Ani's healing is going.

Slow and steady wins this race, but sometimes we get impatient waiting for the progress. So I will soon layer in another couple pieces to this puzzle (we'll give homeopathy and NAET a shot soon) to see if I can't shave off some time from my kitchen sentence for good behavior!

Monday, October 24, 2011

ZiZi's Story: Three Years to Present

By age three ZiZi was doing well. She had finished a year in a small Montessori classroom (about eight to ten students) with two wonderful teachers. She was not much of a talker and rarely initiated social interactions, but she was a sweet child and other kids initiated with her. After adding in the supplements and epsom baths we noticed that ZiZi was interacting more and more with other people.

Trial and Error Approach to Finding Solutions
Working with ZiZi's behavioral specialist we tried various intervention combinations to speed her recovery. We were assured by the pediatric specialist that we had caught things early and kept her so highly functioning that she would be completely recovered by second grade. So we had great faith and tried a few different things.

We added Enhansa, a turmeric compound, as an anti-inflammatory. This resulted in good gains for ZiZi and it became obvious that the doctor's comment about gut inflammation and brain inflammation being linked was true. As this took down the inflammation in her body ZiZi began using more words.

We also tried Low Dose Naltrexone (LDN) which is used as an immune modulator for children with autism. It is also used for patients with Crohn's, cancer, celiac disease, and other various issues in which the immune system is involved. Again, the validity of the link between the immune system and her neurological symptoms was supported. Within days of being on LDN ZiZi initiated conversation with strangers for the first time. It was also the first time she stopped shying away when someone talked to her that she didn't know.

We added things slowly, one by one, so we could tell what the impact was from a particular supplement. Some of them we saw virtually no impact and others were immediate wins with big milestones suddenly being met in a way that I did not believe was coincidental.

We kept pushing, kept supporting our daughter, and I kept researching. At this same time that ZiZi was having some good results with her neurological symptoms she was still having a lot of digestive symptoms. She was on the GFCFSFCF diet but was still gassy all the time and had more diarrhea than seemed normal. My digestive problems were very bad by this time - perhaps from the stress of our multi-year journey or perhaps because I had been trying to make food "normal" for my kids even though we were GFCFSFCF. This meant we ate a lot of starches for our baked goods / carbohydrates and my body was not tolerating it whatsoever.

One day on an autism yahoo forum a parent was rejoicing over their family's success with the Specific Carbohydrate Diet (SCD). I started looking into it, as I had looked into all other favorite treatments mentioned on the forum. This diet was also listed in the literature given to us by the pediatric specialist. Turns out it was the original healing diet for celiac disease prior to the discovery of gluten. I, myself, had a celiac diagnosis so I researched further, bought the book, argued with my husband about it, called the doctor, and decided to go for it. Other parents reported it as their best intervention. What did we have to lose? Andrew and I agreed to a four week trial run, as most people could tell a difference in that timeframe and that was about how much time we had left before school started.

We started the diet on August 1. ZiZi had always been a somewhat picky eater and the beginning of SCD was no exception. As hard as it was, by day five or six she was eating things she would not have eaten before. By day ten her language skills had increased and when I took her to meet her teacher and see her new classroom around week four she yelled out in delight, "Ani, come here. Want to show you something." Her teacher, who has known her since she was about four months old, was totally floored. Her jaw dropped further when she watched my girls consume a HUGE snack of cauliflower/cheese/egg "pizzas." ZiZi was finally eating large quantities of food and her verbal skills were increasing at a level I finally considered a breakthrough.

Prior to this diet, every gain was a hard-fought, slow win. Once we added SCD the gains just kept rolling in. School started in September and ZiZi transitioned to her new classroom. One of her classmates was particularly attentive and they became "best friends." She looked forward to seeing her friend every day and they did almost everything together. This was a bonus for ZiZi because her friend was a year older and tended to do harder work in the classroom than the kids ZiZi's age. As a result she got some extra time with the numbers and letters.

Throughout the year she continued to progress. Her thighs looked healthy and chunky. Her cheeks were pink and round. She looked healthy! Transitions continued to challenge her and my travel two days a week obviously bothered her routine. She cried easily during transition times, but was also a very hard worker in the classroom. Her teachers told me repeatedly that she was a very focused worker. She works harder than her sister ever had to work to remember names of letters / numbers but she makes progress, slowly and steadily.

We continue to tweak her diet and supplements. Over time we have migrated to a combination diet of Specific Carbohydrate Diet (SCD), Low Oxalate Diet (LOD), and Gut and Psychology Syndrome (GAPS) diet. As I add more probiotic foods (hot pink sauerkraut is a favorite), gelatin and fat filled soups, and nutrient dense organ meats like liver, ZiZi rewards me with an uptick in progress with some neurological symptom. Anytime we battle the belly bugs with natural anti-fungals / anti-bacterials, ZiZi again rewards me with an uptick in progress. It is easy to keep up the crazy when the results are so visible. I love comparing notes with ZiZi's teacher because she notices the upticks. It is fun to watch her blossom.

I have recently begun talking to ZiZi about how special she is and how she brought the gift of healing our home needed so badly. We talk about how she used to be unable to tell us what she thought and how now she is able to tell us all kinds of stories and jokes. We talk about how our friends and friends of friends also benefit from her gift of showing us the way to heal our bodies.

She is a gorgeous child, full of life and giggles. Not the sad baby who was always frowning because she never felt good. She is still a little more reserved in personality than I think she will be in a few years, but we've only been doing this diet for about 15 months and it takes time to starve out all the pathogens. We no longer worry about ZiZi's future. Just yesterday she came home with her first set of math problems, right about the same age her sister was coming home with math problems.

ZiZi's Story: Two to Three Years

Just after ZiZi turned two, her leg muscles were noticeably different in size. Another bizarre symptom. She had also broken out in a weird rash on her leg and above her diaper area just a few days after the swollen forehead incident. The rash persisted (still does, to this day). She learned to compensate for her loss of balance and it was difficult for people to notice that she had any sort of balance disorder. However, she was in constant motion, rocking back and forth on her feet, because it was easier to control her balance while moving than standing still. As parents we noticed her catch her balance many times a day, although it came and went and there were good days with fewer / no catches and bad days when she would be quite frustrated. To friends and neighbors who couldn't see what we saw, we probably looked like we were after a phantom diagnosis for a kid who was fine, maybe just a little clumsy.

Although she continued to have ataxia, she had gained a little bit of height / weight on the GFCF diet. Her energy level had picked just enough for me to notice and by her 24 month checkup she was back on the height weight charts: 5th percentile for height and 3rd percentile for weight. This was wonderful news, although it didn't budge from those percentiles for a very long time.

However, bulldog that I can be sometimes, I wasn't satisfied. It wasn't as though she was suddenly thriving. She still needed an iron supplement and her coloring wasn't great. I kept looking. I cooked more / better. I implemented a Weston A Price approach to cooking in the household based on a cookbook recommendation (Nourishing Traditions) from our midwife.

Midway through the year we "upgraded" our diet again, this time to a gluten-free, casein-free, corn-free, soy-free diet. I had some allergy and inflammation testing done for myself and my nurse pointed out that frequently if gluten is a problem, corn and soy usually are as well (particularly with all the GMO crops in circulation - don't even get me started). So I put ZiZi on the same diet with me, all the while continuing to let Ani and Andrew eat gluten/casein/corn/soy snacks in moderation when ZiZi wasn't around.

Throughout the year we continued to have speech therapy and cranial sacral therapy appointments. At some point during my research we added omega 3s to the mix, along with wild blueberries which are a good anti-oxidant. At that point Zi's speech picked up suddenly and she had words. She didn't talk a lot but she could "read" her favorite book. She read it to the speech therapist and was released from speech therapy a little after age 2 1/2.

Search For A Diagnosis
Although the home cooked meals and therapies took time from our schedule, the real drain on our family's happiness was the continued search for a diagnosis for ZiZi's ataxia. It sometimes seems as though ZiZi lost her second year of childhood to being a lab rat. Virtually the entire year was spent going from specialist to specialist, test to test, searching for a diagnosis.

The neurologist was focused on the ataxia and the loss of physical skills that appeared with the strange forehead swelling. I was focused on the ataxia AND the diminutive stature she maintained. While continuing to test and meet with the neurologist about the ataxia I also set up an appointment with an endocrinologist, not so much to talk about the ataxia as about the failure to grow. The endocrinologist chided me for feeding her goat's milk instead of cow's milk and ordered a growth hormone test which turned up our first unusual lab result. ZiZi had plenty of growth hormone but basically no IGF-1. I went back to discuss results and he told me that the problem was with what I was feeding my child.

I was IRATE. If he had said something about malabsorption that would not have offended me. But to be told it was the foods I fed her, particularly when I was working my @$$ off feeding her a whole foods diet, was insulting. The note he wrote to our pediatrician's office even made our beloved PNP annoyed. She said it was a waste of the paper he wrote it on. We never went back to that endocrinologist but the seed was planted that perhaps something digestive was going on and was the cause for both the ataxia and the failure to grow.

After the fabulous assistance from the endocrinologist, I went up to Johns Hopkins for a second dose of medical expertise. "I see what you are talking about and I think it's something weird but not something horrible. Keep on your same path with Dr. T down in Richmond." Great. Thanks. So glad I took time off from work and dragged my husband up here to have you be too sleepy to even look at the videos before you poo poo our concerns.

So we went back to our (wonderful - seriously I do love her) neurologist at MCV. Because of the IGF1 result she changed course. She had been pursuing a theory that ZiZi was suffering from mini-seizures but now she mentioned something called mitochondrial disease. She wanted to do a spinal tap. We balked. I didn't even have epidurals when I birthed my two babes. I wasn't sure I could put a needle into Zi's spine just to get the right name for a diagnosis. So we stalled out and said we needed to think about it. When talking about the spinal tap the neurologist said she was looking for something that was usually associated with autism. Not that she was calling my daughter "autistic," mind you. Just whispering the word.

Meanwhile, I kept researching on the web. I was driving my husband crazy. I was probably driving myself crazy too but I was too worried and busy to notice. I picked up a lot of tidbits along the way (thus the addition of the omega-3s and wild blueberries) which helped to tweak things here and there. I went back to our fantastic Pediatric Nurse Practitioner and told her I had a hunch that this was all "leaky gut" (a somewhat medically controversial term, thus the quotes). I thought it too much of a coincidence that I had gut problems worsened at the same time Zi's medical issues that continued to worsen. So our PNP mentioned a local autism specialist. Again, that word. She said that she was the one in town who knew the most about "leaky gut" and it would cost us nothing but money and time to get her input. Seeing as how we had already wasted a lot of both money and time and had nothing to show for it, why not?

So we went to the pediatric behavioral specialist. She examined ZiZi, asked some questions, and then asked very specific questions about my health and my family of origin. It was like she knew the answers before she asked the questions. She explained the link between metals sensitivity, leaky gut, neurological symptoms, and more. She also said something about mitochondrial disorder and autism spectrum. I am sure there are doctors that would argue with her approach and statements and others who would support it. All I know is that the conversation with the phrase "high functioning autism spectrum disorder" was extremely helpful to my research! She ordered a bunch of tests (blood, urine, poo, and hair testing) and put ZiZi on a number of supplements after she got results. She had us add epsom baths to our routine and complimented us on the omega 3s and GFCFSFCF diet. She said that it was her opinion that the reason it took so long to find out *what* was going on with ZiZi was that we had worked so hard to keep her so high functioning that she didn't present like other three year olds would have presented with her situation.

So the spring before ZiZi turned three we had a phrase "highly functioning autism spectrum" to research, a GFCFSFCF diet, and a bunch of supplements + epsom baths to help recover our child. We did them all diligently and continued on with the cranial sacral appointments as well. ZiZi was released from speech therapy shortly before she was 2.75 years old so we were on a good track. Things were progressing, albeit slowly.

I began reading up on the collection of symptoms for ASD and realized a lot of ZiZi's strange behaviors that we had observed since she was younger actually had official terminology. She had a couple of "stims" or self-stimulating behaviors. One had developed when she was about 6-9 months old and the other had developed around age two. She was very particular, almost religious, about tidiness. If food / drink dropped on the table it had to be cleaned up before she could continue eating and she would freak OUT if we were going to leave it there. She hated getting dirty. Her room had to be clean before she could go to sleep. Oh, and the closet door had to be closed too because that is the way a closet door was supposed to be.

All the little quirks our cute, sweet daughter had displayed were covered in a listing on autism spectrum behaviors. When she avoided eye contact and would not participate in a gymnastics class? Spectrum. When she did the same thing over and over and over with an obsession that no other child in the class would match? Spectrum. When she flicked her fingers out of anxiousness? Spectrum. When she had difficulty finding the right words or communicating? Spectrum. Obsession with the swings and spinning? Spectrum. It was eye opening and in some ways a relief.

Some parents fall apart when they hear the word autism. I embraced it with open arms because I had lost over a year searching (in vain) for an appropriate direction to help my child. My attitude is that it is just a label and who cares? It is a label on an insurance form used to explain a collection of behaviors. It isn't what defines my child and it doesn't tell us what the future holds for her anyway. Honestly, there are days I think it isn't the "true" or ultimate diagnosis we will reach for her after she has had time to heal and there is (or is not) anything left to diagnose.

Labels do not matter one way or the other. They are available for our simple minds to categorize the symptoms so we can set our expectations for behavior and treatment. I was glad for the label in that it helped me to understand ZiZi's mind better and understand how to better support her recovery. Strangely, I am deeply grateful for the phrase "high functioning autism spectrum disorder." Almost as grateful as I was the day she "lost" the label.

ZiZi's Story: Panic at 23 Months

On April 20, 2009 ZiZi woke a little later than usual. Ani had already gone to school and my mom was over to take care of ZiZi so I could work. Zi woke up crying (not uncommon given her wet diaper every morning) so I went up to get her. I leaned over the crib and saw something that freaked me out. Her forehead was swollen, and I mean SWOLLEN. Think Worf from Star Trek: The Next Generation.

I called my mom who also gasped and said, "That is really odd." So we called the pediatrician, fed her breakfast, and took her in. By the time we got to the pediatrician's office her head swelling was down to 1" x 1". Our fantastic Pediatric Nurse Practitioner (we had switched to her after the doctor who missed the "failure to thrive" situation) asked a lot of excellent questions and called in the physician for a consult. We only then, when being asked questions to assess the situation, noticed that ZiZi was losing her balance. Not only that, upon reflecting, we realized that for the prior two weeks ZiZi had been more "clumsy" than usual.

In an abundance of precaution we went downstairs at the hospital for an Xray. While we were in the waiting room her balance was so poor that she dropped to her hands and knees, fussing because she couldn't stand up and keep her balance. When she was crawling she looked up at me and fell over as well. That was it. My poor baby who had worked so hard to walk could no longer walk and was falling over while she crawled as well. I started freaking out.

The next few days are a blur and yet seared in my memory. There were two visits to the pediatric ER at VCU's Medical College of Virginia. There was an MRI. We consulted with a doctor about the possibility her hip (she had always crawled a little funny on the one hip) could be a contributing cause. We consulted with a neurosurgeon about the results of the MRI. He said the MRI was read as normal but that he saw something in a temporal lobe. However, that should manifest as seizures, not as ataxia (losing your balance). That did NOT make me feel any better.

We consulted with a neurologist who then set her up for more tests and put her back into physical therapy for a few weeks so she could get a thorough assessment from the physical therapist. The swelling in her forehead would come and go and her ataxia would come and go. The physical therapist saw the same thing we were seeing and wrote up a lengthy report for the neurologist. Just for fun, here is a short excerpt:

Zoe has had 6 weeks of PT where during four of those sessions she was noted to have significant balance issues resulting in her inability to stand without support, walk across a room, kick a ball, catch a ball, pick up items off the floor and return to standing, and walk up and down the steps safely and without support. During all 6 sessions, the PT repeated many of the same games and skill tests to determine if it was the skill that was the problem or if it was Zoe’s balance issue that made it hard to complete the task. It was determined that on the 4 weeks where Zoe had a very difficult time keeping her balance during any task including PT, it was not the task that was the issue but whatever was causing her to lose her balance. During the 2 weeks where Zoe had minimal to no issues with balance, She was able to complete all the above mentioned tasks with ease and more than 10-20 times each without support and without falling. This PT concludes that Zoe’s trouble with balance that has her family so worried and is affecting her daily play and life is not due to an issue that is correctable by PT at this time. There seems to be some underlying cause creating these issues with balance and swelling of Zoe’s forehead. The PT at this time refers Zoe back to her pediatrician and neurologist for further consultation.

The months of April and May for the year 2009 were the worst of my life. I was still traveling two days a week for work and constantly worried that my baby could succumb to whatever bizarre thing was going on in her body and slip away entirely. She was working so hard for minimal progress in speech therapy and then suddenly she lost her ability to stand still. It was dramatic but the answers were slow to come.