Yesterday I took Nathan to his doctor for a check up. He threw up at school so they sent him home, and he did look a little bit pale and out of it. The doctor couldn’t figure out why he was throwing up, but we took the opportunity to talk about his overall health and how to give him the best possible care.
Her first recommendation was to see a GI doctor about getting him on a G-tube. She feels this is the right time for us to take this step. Of course she recommended supplementing the tube with oral feedings, where we’d feed him his main meal orally and then liquids through the tube. I am not a big fan of this idea but I agreed to see a GI doctor to discuss.
Next we talked about his diet. We went back to some old test results where Nathan showed IgE allergies to dairy, wheat and egg whites. After his hospitalization last year I got so scared about his weight that I decided I’d rather feed him bad foods but have him gain weight, than for his body to be so malnourished that he can’t fight off illnesses. He is not a big fan of GFCF foods so he wasn’t eating too much, so that’s why I made that decision back then.
Now here we are, a year later, and honestly he’s been in worse shape eating dairy and wheat. He is still just as thin, still not eating very much, but he’s been way sicker this year than last year. So it’s time to go back to healthy eating.
As of next Monday our whole house will be gluten casein free. I am sure Izzy will benefit from this too, as she has chronic diarrhea.
Doc is also going to do some immune system testing, as well as more allergy testing and in depth bloodwork to see if we can figure out what else is going on with Nathan. However, the current theory is that he is micro-aspirating fluids and saliva into his lungs, and since there are many bacteria in the mouth, when they go into the lungs, they immediately cause inflammation and infection in the lungs. The problem is that a G-tube won’t help with aspiration of saliva, so even though it would help in some ways, it wouldn’t help in others and could cause other problems, such as infection and gas etc.
It’s kind of a complicated thing. So far we’ve avoided the “medical” approach and Nathan has mostly done well. It’s scary to think about opening the door to the “medical” world as it’s such a series of negotiations. You pay something to gain something.
So we will take it slow. For now, all we are doing is improving his diet, and seeing a GI doctor. Then the rest will unfold.
Makenzie has never had any issues with infection or gas with her g tube. I used to hate her tube and pushed so hard for her to eat orally but I now really love it. Makenzie is also on a very strict diet that is free of gluten and dairy and many other things. I do a blended diet and it feel so good to know that she is getting what she needs in a healthy way so that she can grow and learn! We did not do a FUNDO with Makenzie’s tube which would be the reason for gas. Give me a call if you have any questions about the g tube and what the doctor has to say when you see him! Thinking of you guys and so glad Nathan is feeling better!
I know you hate to the thought to a feeding tube, Ryland was almost 2 before he got one but it’s so helpful. When Ryland started loosing teeth he stop eating by mouth and then when he had leg surgery he stopped all together and didn’t want to so he was just tube fed. Now he finally is getting his teeth back in and wants to eat again and take a bottle. I know it’s another surgery but as he grows he does need more to eat. We were lucky because Ryland surgeon was one of the best around to do it and we have never had problems with it.
Ryland has DI so it was hard to get the 30-40oz of fluid in him to keep him healthy. Ryland still isn’t to heavy but he also moves all the time, so he burns cals non stop. he’s about 40lbs and 48inches long
This is my first time to your website, but I wanted to let you know that I agree with you about looking into diet…No matter what disability your child has, food allergies in the gut can occur. In prayer, we took our son off of gluten, cow’s milk, and anything with a peanut base. It was one of the best things we ever did for him. The Lord has blessed him with good health.
i think we are joining the club soon also. think elliott is getting j,g tube. he is getting so skinny. his gi issues are his biggest issues. his tummy digest slow that is his issue. good luck with the apointment let us know how it goes.
I just wanted to pass along something that helped our daughter. We’ve had tremendous success on the GAPS diet, most of the information is free online. If you’re already going GFCF, this may make it even easier. I decided to put our 3 year old on it for behavioral issues, she has CP and was always hovering right under the growth charts. She went from a kid that gained half a pound in one year to gaining 6 pounds in 5 months. She’s in the 30th percentile now which I never would have imagined. I used to pump her full of supplements and oils and got nowhere-then I cut everything way back and just pretty much give her probiotics, enzymes and fish oil along with the GAPS food. We’re not zealots on the diet, we certainly don’t follow it to a tee, but we do adhere to the homemade bone broth everyday. I don’t want to overwhelm you with another option, but I did want to pass it along. The mom I know through ABR had a daughter with intestinal migraines and now she is thriving too. Good luck-you’re a great mom.