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.


  1. I am so enjoying this blog and following your lo's recovery. :)

  2. I agree with Moriah! This is so inspiring and encouraging!!

  3. Thanks Kati for mentioning the blog. It was wonderful seeing Zizi the way she is after all she's been through. It has been a long journey for you all and thanks to your persistence has a happy ending :-)