Just got back from an Endo follow up for Eli. I feel frazzled- I *thought* the appointment was a follow up for PT and OT eval but had to totally switch gears when they handed us new patient endo paperwork. My brain didn’t want to do that. lol
Anyway, I wanted a second opinion on the levels we got from his pedi and was hoping to speak to someone who specialized in children and Down syndrome. No such luck, as I am sure you can imagine.
The endo did confirm that Eli has subclinical hypothyroidism (SCH) but stated that all his symptoms could be linked to anything and it is controversial to treat this in children. She also stated that he was growing fine (according to the DS chart, which we don’t use…) and that because it is a lifelong medication they would rather not give him anything. Even though it is likely he will have hypothyroidism later and be on meds forever anyway. (DS and Thyroid)
Eli’s symptoms: thinner hair, delayed tooth eruption, mottled skin, poor eating, poor growth.
I’ve gotten to the place where I don’t even want to offer Eli any food. It takes us 45 minutes to feed him, he refuses to self feed and he’s loosing weight. I just want to cry, honestly. Right now my awesome husband is feeding him lunch because I just couldn’t do it. Stupid, I know. But it stresses me out that he won’t eat and to be told it’s normal and that he will eat when he is ready is a load of bull. My kid won’t eat. Period.
It would just be nice to be treated fairly instead of just “oh well, he has Down syndrome” or “he’s too little”. Just like the issue with his sleep apnea. No one will treat it or help us help him.
(Granted, now that my kind can actually breathe, I honestly don’t think he even has it, but it would take retesting to find out for sure.)
It’s so frustrating!
I called the Down syndrome clinic to see what the doctor says about SCH and we will go from there. I know our naturopathic doctor will treat this, but we have run out of the funds it will take to see her at the moment. Awesome, huh?
I did some research on my own and haven’t found much supporting our decision to treat SCH- most says children will outgrown it and little of the research represents children with DS. So it’s a grey area.
All I know is that I want the best for my kid and that doctors suck butt. lol Anyone have any feeding tips or thyroid experience?
EDIT: Ok, I’m feeling better lol. Barry got him to eat lunch and I offered him the dinner he refused yesterday at dinner today. He ate it fine with no problems. -_- We are going to try whole milk, pediasure, and some juicing to get him the nutrients he needs. We already add coconut oil and vitamins to his meals, so this isn’t a big change and adds calories. I will also be looking into more work with our OT and ST. Thanks for all your concern! 🙂