Not every doctor sees Down syndrome as a treatable condition. Many will dismiss symptoms that would be alarming in a typical child because it's "just part of the Down syndrome".
Thankfully there are some doctors who realize that Down syndrome is treatable. We are lucky enough to have our son Benny in the care of one such doctor, the wonderful Dr. Erica Peirson.
Since working with her to correct Benny's hypothyroidism we have seen him go from an infant with incredibly low muscle tone, near constant tongue thrusting and poor health to a strong little boy whose trisomy 21 isn't having such a huge impact on him anymore.
Despite these obvious signs of congenital hypothyroidism as a newborn, Benny would still not have been diagnosed to this day if it weren't for Dr. Peirson.
All of his other doctors would only look at his TSH and T4 levels, which were only slightly off. Dr Peirson looked at all of Benny's thyroid levels and discovered that his reverse T3 was off the charts. This meant that Benny wasn't absorbing the T3 into his cells. He was suffering from hypothyroidism just as much as if his T4 or TSH were high.
I am so grateful that we discovered this fairly early on. My only wish is that we had found out even earlier. Untreated congenital hypothyroidism causes irreversible brain damage, and the longer you wait to treat it the worse it is.
Unfortunately, many babies born with Down syndrome will suffer this avoidable brain damage because so many medical professionals will dismiss their obvious hypothyroid issues as being caused by their extra chromosome and fail to run all of the labwork necessary to identify and treat the issue.
After witnessing the incredible transformation in my son and realizing how many babies born with Down syndrome are not benefiting from this information, I asked Dr Peirson if she would talk to me about these thyroid specific issues related to Down syndrome on our T21 Action podcast.
The result is this truly amazing interview that I am so very proud of. I hope that you will listen to and share this podcast with anyone you think might benefit.
Dinner came out so well tonight I had to share. People often tell me they could never go without wheat and dairy, but it's easy when you eat meals like this one; juicy herb roasted chicken over crispy potatoes, stuffed mushrooms wrapped with bacon and a warm green bean salad with garlic and grape tomatoes.
I've been doing this for a long time though, so I've had plenty of years to master the art of feeding my family gluten and dairy free meals. I enjoy cooking, but I'm comfortable eating out at pretty much any restaurant too. It's easy once you get the hang of it.
My oldest son was very colicky when he was a newborn. While reading Ann Lammott's "Operating Instructions" about her experience of dealing with colic, I decided to try the solution that worked for her in the book - cutting out wheat and dairy.
Eleven years later our newest member of the family, Benny, appears to also have trouble with wheat and dairy, so I've become even more vigilant about keeping it out of my diet while I'm breastfeeding him. It's not a big deal though, I love how much healthier my family eats as a result.
After we ate dinner I threw the remaining chicken carcass in the crockpot, covered with salted water. I'll add a tablespoon of apple cider vinegar and some cracked pepper and call it good. Tomorrow I'll strain out the liquid and use the bone broth in almost every dish I make for the rest of the week.
I learned about bone broth when I was trying the GAPS diet to try to cure my IBS a few years back. Bone broth is really good for you. It helps keep your gut lining healthy and provides important nutrients for brain function. And it tastes good. Incidentally, it is naturally gluten and dairy free.
One of my favorite dishes to make with bone broth is chili. My entire family loves it, and it's so delicious and warming on a cold winter day.
I make my chili different every time depending on what meat and beans I have on hand, but here's a basic kind of recipe for my chili:
Some bone broth, filling about the lower third of the pot
Ground beef or other meat browned first in the frying pan with some onions
White beans, pinto beans and kidney beans canned or, if I'm feeling really ambitious from scratch
Diced tomatoes, garlic and spices. (Chili powder, cayenne pepper, salt, pepper and whatever else feels right to taste)
My family can handle goat dairy, so I might top with shredded goat cheddar or a spoonful of plain goat yogurt, but a lot of the time we just eat it plain.
What's nice about chili is that you can add ingredients at your leisure and the longer it cooks the better it tastes.
Another quick bone broth recipe is chicken soup. This is just chicken bone broth with rice, cut up leftover chicken meat, carrots, onions, garlic, salt and pepper. Simple, delicious and very healing for any kind of cold or flu.
There are really lots of yummy foods that are easy to make and good for you that do not have wheat or dairy in them. The past few weeks we've used the meal planning site plantoeat.com to plan and shop for our meals. It's really nice because you can easily add recipes from any website to your planner and it outputs a convenient shopping list for you.
I've found a lot of great recipes on paleo cooking sites and through the GAPS Diet and Nourishing Traditions cookbooks. These are great resources if you're looking for ideas.
Even if you don't have time to cook or you're traveling you can still eat gluten and dairy free. Just remember that all meats, vegetables and fruits are fine, as well as carbs like corn, potatoes and rice.
Someone posted recently that they felt they couldn't eat out because their child was on a gluten and casein free diet. Here are some examples of what you can order when eating out:
Go to a Mexican restaurant and order tacos on corn tortillas. Real Mexican restaurants usually don't put cheese on their tacos anyway, but always request no cheese or sour cream and remind them not to put any on the refried beans either.
At American restaurants order steak or grilled chicken or fish with french fries or a baked potato and a salad or sautéed veggies. Avoid ranch dressing. Italian or thousand island are fine.
You need to be careful at Chinese restaurants to avoid breaded meat or anything cooked with soy sauce because most soy sauces have wheat in them. Simple dishes like beef broccoli or cashew chicken with rice should be fine, just ask the server to make sure it's not cooked in soy sauce. There is very rarely any dairy in Chinese food.
Thai, Vietnamese, Korean and Japanese foods have almost no wheat or dairy in them. At the pho place near my house I even order the Vietnamese egg rolls because they are wrapped in rice paper, not wheat. The more authentic the better, just remember not to dip your sushi in the soy sauce and avoid the tempura dishes and you should be fine.
Indian restaurants have lots of dishes to choose from. Masalas and that creamy spinach dish have dairy, but many other dishes do not. There is even a gluten free crisp made of lentils that many Indian restaurants have, so as long as you don't order the Naan you are good to go in the gluten department.
French and Italian food can be a little heavy on both wheat and dairy, so are probably better to just avoid. Spanish tapas on the other hand can be quite fun, with plenty of little dishes that are safe to try.
Ethiopian might be a hard one since the bread is such an integral part of the meal, but Moroccan food and other African restaurants should have plenty to choose from.
Brazilian restaurants are really easy to eat at, since it's largely just hunks of various meats and a salad bar. This can be a real treat for a kid who can't eat wheat and dairy.
Once you get the hang of it you will find that it's not such a big deal to go without wheat and dairy. The hard one is pizza, which is a basic staple of every fricking kid party, along with cake and ice cream.
Luckily there are lots of places that sell gluten free pizza. If they don't have dairy free cheese it's not terrible with no cheese. Whenever my son is invited to a birthday party I let them know his food restrictions and ask if I can send him with his own food. Nobody has ever minded me sending him with a small pizza and cupcake of his own and that way he doesn't get left out or tempted to cheat.
Someday I'll put up some of my weekly meal plans for more awesome ways to eat gluten and dairy free. I hope this post is helpful to you!
Since becoming a mom to a little boy with Trisomy 21 I have written a lot about Down syndrome and disabilities. I am a storyteller, wife and mom to a teen and a toddler. Life is busy!