Nutrition for SATB2 Syndrome

Kids with SATB2 Associated Syndrome have many different dietary needs because of the many components of the genetic disorder affecting them, such as allergies, osteopenia, low myelination of neuronal axons, and the side effects from seizure medication.

Here is what I do for Chelsea's diet:

1. She is GFCF (gluten-free and casein-free), and from some of the other moms I talked to, this is a pretty common allergy. I was very, very strict about this diet for two years, so her gut had time to repair. Now we still stay very low with gluten and casein, but can occasionally cheat.

We started going gluten free because allergies run in my husband's family, and I think it was beneficial, plus it got us eating healthier as a family, so that was a bonus too! Chelsea's diet means a bunch of fruits, veggies, and lean meat.

2. Calcium supplement! Many kids who have SATB2 Syndrome also have osteopenia (low bone density). TO combat this, I give Chelsea a calcium supplement that is also fortified with Vitamin D. That is super important! Calcium and Vitamin D go hand and hand. Additionally, certain brands of seizure medication also contribute to poor bone development, so ask your pharmacist about the side effects of the medication!

We had a really rough time finding a calcium supplement that Chelsea would take- she rejected or gagged on most. The kind pictured above is perfect for her! It looks and tasted like a chocolate tootsie roll, and it is her reward if she eats all her other vitamins. It is geared towards older women, but I had her doctor take a look at it, and it is perfect for Chelsea's age to take one per day.

3. Daily supplement of fish oil! This one helps with brain myelination. Pretty much, the more fat that coats your nerves coming out of your brain, the faster the impulses move. This helps with motor control for speech and gross and fine motor. I use a brand specific for Apraxia- Nordic Naturals ProEFA3-6-9.

These capsules are soft gels (see below) that I puncture with a toothpick, then squirt into Chelsea's mouth. It took a little while for her to get used to the sensation, but she is fine with it now.

4. Wide variety of fruits and veggies! This one has several reasons, and I know it can be very difficult for kids with sensory issues. First, I already explained that her diet allowed for mostly fruits and veggies, so we don't have a ton of other options. But also, I want her exposed to a bunch of different food because in my college Nutrient Metabolism class, we were able to research different phytochemicals (micronutrients) that appear in different foods.

Bottom line- the wider variety of fruits and veggies you eat, the more nutrition your body gets. Plus, I am terrified that she will get addicted to 3 foods and eat nothing else. (But eating some food is better than none! So you amazing moms whose kids eat only bread and hotdogs, fed is best!)

5. Probiotics! Between the ages of 18 months and 3, Chelsea rarely had a time when she was NOT sick. She constantly had a drippy nose, cough, and I could not keep that girl healthy despite my meticulous diet planning (and I had TONS of nutrition and diet classes in college!). Finally, I went out and got a bunch of casein free yogurt and probiotics, and poof! It was a magical transformation!

Now, Chelsea is rarely sick, her diapers are WAY easier to take care of, and she can actually go to school instead of being kept home because of illness all the time! In choosing probiotics, I pick out kid-specific ones, but change the brand every time so that her body doesn't become resistant to a specific probiotic strain, and the more billions are in there, the better! Here is the her favorite kind:

Good luck!!!