Our journey with ZiZi had a few distinct phases that I can only assume are familiar to others with medical conditions:
1. “Curious” observations
4. Search for a 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.
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."
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.
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.