Today is Day 23 of 31 for 21.
A friend recently sent me a link to a blogpost in which someone shared the details of the diet they fed their child with special needs, saying that it reminded her of me. It was quite similar to our approach to food with Yirmiyahu, so I thought I’d share what we do in the hopes it will be helpful to other parents. I’ve written about some of these things in the past but others are new so this is the latest.
As a society we tend to disconnect between what we put in our mouths and how we feel, but not only does what we eat affect the functioning of our physical body, it affects the functioning of our minds as well.
I’ll start with his current supplements:
Fermented cod liver oil – this is great for the brain and we give him about a 1/2 teaspoon a day in his bottle, split into two different bottles so the taste won’t be too strong. This contains vitamin D, vitamin A, DHA and EPA. I used to give this with butter oil but when he was hospitalized at eight months, he stopped taking his supplements for that period. When he got home, he was no longer used to the taste of his formula with supplements and rejected them all. I had to very, very slowly reintroduce them and build up his taste tolerance. Butter oil just never got added back in.
Probiotics – these build the digestive system and are very important to gut health, which is at the root of all health. He started getting these when he was four days old – I added it to the milk I expressed when he was still in the NICU. He’s been getting 9 billion cfu daily but now his wonderfully high quality probiotics have clumped together into a solid chunk thanks to the moisture in the fridge over time. I have to find a new probiotic to replace what we’ve been using until now.
Nutrivene-D- this is a special multi-vitamin for individuals with T21, and Yirmiyahu gets 1/2 teaspoon daily, split between two bottles. He’s been getting this since he was two months old.
Folinic acid – this is a more bioavailable form of folic acid and I give therapeutic (ie high) doses of this combined with 5MTHF based on research studies regarding treatment of cerebral folate deficiency, which I believe is the underlying issue responsible for Yirmiyahu’s slow growth rate. I bought the 5MTHF in capsule form so it’s easy to just open and add to his bottle, but it took me a couple weeks after starting with the 5MTHF to give the folinic acid since they’re tablets and it took me that long to experiment with crushing them. It turned out it was pretty easy to do and there’s not much of a taste to it.
Colostrum – I give this daily to build his immune system. In the bottle. Naturally. The best thing about his formula, other than being dairy-free, is it’s a great conduit for supplements!
Digestive enzymes – I’m currently adding in some digestive enzymes that we got in a free sample pack once a day to his bottle and hope to add this to my next vitamin order so I can make it something he gets daily. I think his body would benefit from more help in utilizing the nutrients in his food.
Zinc – I give this daily via a spray that also has elderberry and echinacea. He willingly opens his mouth and lets me spray it in – one squirt a day.
Siverbiotics – a teaspoon daily as a natural antibiotic. This is unfortunately almost finished and since I’m not yet able to make another order, I’m planning to give him olive leaf tincture once this is gone.
Evening primrose oil – when I remember I rub some of this on his skin. I started this just last week and haven’t yet gotten into a groove with giving it so it’s still irregular.
Homeopathics – I have a really hard time with homeopathics since they aren’t supposed to be given with food nor right after or right before food. Without being able to tie this to something regular in my schedule, it’s hard for me to remember to give remedies that are supposed to be given several times a day. So it’s kind of hit or miss. I most often remember to give Bioplasma cell salts. I have a couple of homeopathic remedies that are good for when he’s under the weather; R49 Junior is the one I used most last winter and it’s going to be pulled out again this winter as needed. I have two others in this series but like I said, I’m homeopathically challenged.
Food – this has been challenging for me, since for so many months Yirmiyahu showed minimal interest in food despite my efforts. Then he got interested but wasn’t eating what I gave him. I worried a lot about this and it’s been a huge relief to me as he finally is eating solids consistently a few times a day, and all I have to do is prepare the food and spoon it in!
Early on I made the decision to avoid were gluten and casein, because both are difficult to digest and have other issues involved with them. I did give Yirmiyahu dairy formula when I began supplementing and continued until he was eight months – it took me four months to convince the doctors that he was reacting to the dairy and get a prescription for the specialty non-dairy formula that we currently use. I’m really glad we did this, especially after I did the reading on cerebral folate deficiency – a milk-free diet combined with supplementation is the treatment. Even though I wasn’t able to actively treat it until now, at least he didn’t have dairy formula for these last seven months to make things worse.
I’m not yet giving any grains, since they’re so difficult to digest. When we do, I’ll start with kasha (buckwheat – we eat a lot of this) and quinoa, which aren’t technically grains but they look like they are so I think of them in the same category.
Fruits and vegetables – I recently saw the suggestion to give six vegetables daily and started making his vegetable mixes with more veggies (used to use three or less). My first mixture was onions, carrots, kohlrabi, apples and zucchini can’t remember the sixth thing but there was something else) – he loved it! The blends aren’t based on any recipes, just whatever six things I have in the house that seem to go together. I don’t consider potatoes a vegetable when making this. I make a potful, then freeze what Yimiyahu won’t eat within a couple of days in containers and defrost them as needed. Sometimes I add extra virgin olive oil to this mix after it’s cooked.
I also give him small bits of raw fruits like apple, guava, banana, mango and avocado.
Coconut oil – I try to give him some coconut oil every day. Since until recently he wasn’t eating solids, I couldn’t mix it into his food. I added it to his bottles (when they didn’t have cod liver oil added) but recently tried giving it to him on a spoon when it was slightly solidified and he liked this. Nice to have one less thing to add to the bottle!
Proteins – he eats chicken, turkey, eggs and lentils (I made him some salmon a couple of days ago but his older siblings found it and ate it first:)). I usually don’t have to make something special for him; he has some of what we’re having.
I feel like I’m forgetting something but I can’t think what it could be, so I guess that’s it!