Subclinical Hypothyroidism

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! 🙂

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10 Replies to “Subclinical Hypothyroidism”

  1. Go back to feeding Eli jr baby food and see if he will eat it.????I hate he is losing weight. Just a thought. Lv you guys. You probably have thought of that.

  2. You need a swallow study. Chewing help. Talk tools therapist or just a good OT who has lots of experience with preemies. It’s all okay but just not known when kids eat & gain weight slow.

    Kudos for CONTINUING to follow moms instincts and yeah–dad can do lunch. Try not to fret & find what he does eat. Graham crackers? No Cheerios. Let me think of early eating list. If drinking milk he’s getting some food. It’s okay but you WILL fix it

  3. Oh and yeah it REALLY SUCKS but lots of kids do puréed food for a long time until its solved. Super thin no chunks or mixed textures.

    1. Swallow study from someone with lots of experience. Sara rosenfeld Johnson trained speech therapist but eating is often OTs here in the USA, with preemies.

      1. Those are not enough symptoms to say anything about his thyroid long term I don’t think. Not that I know but there are other causes of hair loss (like alopecia–also more common with DS, pulling hair whatever the term is for that). The other symptoms impact probably 60% or much higher of the DS population. Of course the population might have 60% or more thyroid issues too I forget that stat.

        My sons TSH was elevated once and we’ve checked his thyroid which fluctuates up and down no meds. Super awfully slow weight gain & poor eating under 20 months and with extra feeding OT from 12 months to 24 m. Finally made headway with graham crackers and moved on from there. Eventually He would eat of all things spaghettios DESPITE the liquid & solid mixed texture.

        I’ve heard of kids eating crunchy things like chips (some healthy ones kinda these days-make -kale chips!??) for the sensory input (not really SAFE if he’s not chewing properly).

        Sarah rosenfeld Johnson was quizzing two moms at the NDSC conference at her exhibit table–am I chewing?? One mom said her child chewed with her mouth very open so that was okay. As layman we can’t always tell.

        If he isn’t chewing effectively he’s likely sick of choking food down.

        Avocado. That was another early food for us.

        Good luck. I bought the whole talk tools kit finally with the video. See if anyone in your area has it to borrow to you. The video and/or instructions on the strengthening oral motor muscles!

        Hoping its “just” that cause sarah rosenfeld Johnson has solutions she was sure. I bought a special small thin fork to put food holding the fork upside down RIGHT ONTO my sons back molars – the right spot for chewing.

        Sounds like it may work. My son eats plenty but is picky and not eating much meat. I’m thinking its not chewing right, he has other oral seeking habits I want to remediate finally if I can. Johnson says get good at the starter kit the first three months then buy her video ($600 two different videos–excellent for local parent groups to have on hand)

        Johnson was saying (at her EXHIBIT table mind you; not her lecture — to her this is just plain & simple cut & dry fact) that ALL people with DS have these complex oral issues. It just manifests in different ways in different times.

        Hang in There. She really felt that with the right videos, support from a local therapist if there is one (she has clients flying in from Asia) that parents can fix these issues.

        I’m a fan but I also think it is a but too much–not all need things and not all are resolved using these approaches but I’ll give them a try. No, I won’t pay $800 for a session like someone said the therapist in their area charges but the one in LA is $275. I may go…

    1. Thank you so much- I appreciate your input. It’s just so frustrating because we were doing so well. Yes we have had issues from the beginning- hard to control milk, poor latch and low tone, but he has always loved food and eagerly eaten it until recently. Even when we began to introduce table foods and more textured stuff, he would eat it. He had a good “munch munch chew” pattern with only occassional gagging. Now he doesn’t gag at all and will eat these foods just fine. He just doesn’t WANT to. I just got done feeding him dinner and he ate it fine. It’s so frustrating! lol I will look into those things and continue to work with our OT.

  4. I have no advice, but hugs to you! We are having feeding and weight issues too. I just started adding coconut oil to his baby food so maybe that will help. Trying to figure all this out just stinks sometimes!

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