ZiZi's Story: Six Months to Twelve Months

Somewhere around six to nine months, my "curious" observations turned into concern. My daughter was a sweet, sweet little baby, but she did not progress as she should have given the context of our families' genetics.

Concern
Six to Nine Months
Given her older sister's progress, my progress as a baby, my husband's progress, and our four siblings' progress, in the six to nine month range ZiZi should have been sitting up, pulling up, crawling, and possibly walking. Her sister walked at the end of nine months. I walked at nine months, and my husband walked at ten months. Nobody in either family was a late walker. However, at her nine month checkup she was really only sitting up. She was not pulling up and she was not crawling and she seemed very far away from walking.

Besides her gross motor skill delays, nighttime was difficult. She wanted constant companionship and did not sleep as much as she should have been sleeping. She would sometimes be awake for a few hours in the middle of the night. She was also not growing nearly as well as she had when she was a young infant. The general feeling of panic I had during my pregnancy was back. At her nine month check-up she measured in the 10th percentile for height and the 5th percentile for weight. She had dropped another standard of deviation for both height and weight in a three month period. I was worried and again I mentioned it to the pediatrician. She reviewed the growth charts, the family history of height, and again told me things were probably fine. She talked about bell curves and how people expect younger siblings to be similar to their older siblings. I told her my opinion that ZiZi's genetic bell curve was not the same as the general public. I have three brothers all over six feet, one who is about 6'9". Nobody was a late walker. I was worried, but she talked me down from the ledge but I couldn't shake the feeling that something was really wrong with our daughter.

Nine to Twelve Months

Around eleven months ZiZi's torticollis was resolved using cranial sacral therapy. Also resolved, unexpectedly, via the cranial sacral therapy was her chronic constipation. There is a funny story that ends with ZiZi naked in a sink at a public library in Northern Virginia. This was the day after her cranial sacral therapy appointment but before I realized the constipation was no longer an issue so I had given her the usual prunes with her oatmeal.

However, even with these two issues fixed she was still growing very slowly and not gaining skills. At her one year checkup she was not pulling up, much less walking. She remained in the 10th percentile for height but had dropped below the 3rd percentile for weight. I, again, expressed concern so the doctor ran blood tests for celiac disease and lead poisoning. She also ordered an X-ray of her hip since she pronated a bit and one of Andrew's aunts had hip dysplasia. None of the testing provided any helpful information. The pediatrician thought we should wait until 15-18 months to see if she was walking and thought her height and weight issues were reasonable because my husband and I were not very tall.

I just couldn't shake the feeling that something was really, really wrong. I talked to some girlfriends one night and they told me about a federal program called Early Intervention that will assess a child who is not growing or hitting milestones like they should. I also called my best friend from college, a pediatrician in New York. I reviewed ZiZi's growth history with my friend and she said once a baby drops two standards of deviation in the growth chart (ZiZi had dropped four in height and 6 in weight) she considers it a sign that there is an underlying issue.

So I called our pediatrician and we had a very short conversation about my friend's concern about an underlying issue. Ultimately, I told her that either she could call Early Intervention or I would. She suggested I go ahead and have ZiZi evaluated but thought it was premature and we should wait until ZiZi was at least 15 or 18 months.

So at one year of age, my daughter showed a number of signs for "Failure to Thrive" but did not have an official FTT diagnosis. Early Intervention reviewed her case and signed her up immediately with a physical therapist. The intake case worker also suggested I should find a new pediatrician because when a mom is worried and when the child is falling off the growth charts it is, indeed, an issue.

ZiZi's Story: Pregnancy to Six Months

My youngest daughter, ZiZi, has been an incredible gift of health to our family. I have a deeply held belief that every child is a gift and each brings something special to the family it joins. Her sister brought us laughter and she brought us better health. Her medical mysteries also helped me to learn my true roles as a mother are really: head chef, nutritionist, researcher, advocate, and cheerleader.

Our journey with ZiZi had a few distinct phases that I can only assume are familiar to others with medical conditions:

1. “Curious” observations
2. Concern
3. Panic
4. Search for a diagnosis
5. Diagnosis
6. Trial and error approach to finding a solution**

**Technically, our trial and error approach to finding a solution started somewhere in the observations / concern phase so I will point out some other things we tried (GFCF, biomed, therapies, etc.) before we had great progress with Specific Carbohydrate (SCD) and/or Gut and Psychology Syndrome (GAPS) dietary intervention.

“Curious” Observations
Pregnancy / Birth
When I was pregnant with ZiZi I noticed the first of many “curious” observations. She was not very active in the womb, which seemed odd. I thought that every baby was active in the womb, at least when they had all the room to rock-n-roll that they needed. This went on throughout the entire pregnancy and once around week 36 when the midwife found an exceptionally low heartbeat I thought, "That's it. I've finally lost her."

But she checked out okay the next week and on the day of her birth it was a beautiful, peaceful, uncomplicated, natural birth. She was a wonderful size at twenty-one inches long and 8 lbs 6 oz (75th percentile for height and weight). She was born sleeping peacefully and when she woke up she fed easily so I breathed a sigh of relief and figured I had been the victim of pregnancy hormone paranoia. She seemed to grow quickly those first few months so I relaxed and enjoyed my baby. She fed well and watched our mouths and faces constantly. She was working on making sounds early like her sister had also done as a young baby. At her first and second month checkups she remained on the 50th percentile for height and weight. At her four month checkup she was in the 50th percentile for height and between the 25th and 50th percentile for weight. Since a heavy / wet diaper can heavily influence the weight of a young baby I just assumed all was fine. There was one kind of funny thing, that mostly I was thankful for at the time. Although she was exclusively breastfed she never had any of the infamous blow out diapers. She really only pooped once a day and sometimes not even daily. Also, her poo wasn't as liquid as her older sister's had been. I mentioned it once to the doctor who assured me that if a baby is exclusively breastfed everything is fine and they will poo as much or as little as their particular system needs to. She had six children and said one of hers only pooped once a week and everything was fine.


4-6 Months
Somewhere around 4-6 months of age she suddenly stopped watching our mouths and making such wonderful eye contact. It slowly shifted and I barely noticed until later when I was reflecting on *when* things had shifted. At this age she was sick a few times and on antibiotics twice. She also had a tear duct that had not opened and was frequently infected. She cried a lot and needed to be held almost constantly. Putting her to bed became a challenge around five or six months old.

She had a strange way of turning her head when she slept, which later I would find out is called torticollis. The torticollis was something we would eventually fix with cranial sacral therapy rather than physical therapy.

In the four to six month range is where she started to drop in her height/weight percentiles. At her six month checkup she was down to the 25th percentile in height and her 10th percentile in weight. During a 5 month visit to the pediatrician’s office there is a note about loose ligaments, low muscle tone, and that a bone seemed to slide. Hypotonia is the word that would later be used in her medial records. She also was not progressing with gross motor skills the way I expected. However, the pediatrician reminded me I wasn’t "that" tall (5'6"), my husband wasn’t that tall (5'8"), and you should not compare younger siblings to older siblings. So I left her office reassured.

Given the horrendous dietary intake of the average American, the pediatrician had nothing but praise for what we were doing. My binges were on things like an organic avocado, tomato, onion, and lime salsa. We ate at nice restaurants when we ate out. At home, dinner was usually one meat + two vegetables, grass-fed meats and organic veggies. Eggs or oatmeal were pretty usual for breakfast. ZiZi was exclusively breastfed until somewhere around 4-6 months when we introduced a few veggies and baby oatmeal. We tried the standard rice cereal but it was terribly constipating. Even the oatmeal was a little rough for her so I rehydrated some prunes and mixed them with her cereal every morning to make sure she pooped at least daily. Somewhere along the line I added in a little flax oil as well which was also helpful.

In retrospect, there were many gentle signs and symptoms of what was to come. Losing more than one standard of deviation for height / weight by six months should have raised a flag. ZiZi had gone from the 75th percentile to the 25th in height and from the 75th percentile to the 10th in weight. But what would any pediatrician have said, given our dietary habits at the time and the fact that she was breastfed? Interestingly, I think the constipation was a key symptom from day one, but was never a topic of conversation at an appointment and since I was managing it with prunes and flax oil I think almost any medical expert would consider it a non-issue. But perhaps it was the biggest, gentlest, red flag of all.