Comments on: A Week’s Worth of Questions — 1. Thyroid?!

By: rickismom

rickismom — Sat, 11 Sep 2010 23:17:24 +0000

Ricki had high TSH for a while, and she started thyroid. Every few years we have to up the dose a bit. The pills are miniscule and easy to take. If you are checking her TSH /THYROID levels regularly, and you see that giving the thyroid does not cause TOO high a thyroid level, why NOT give it? The real clincher is that almost all the signs of low thyroid are things kids with DS tend to have anyway. Any with kids with DS, whose matabolism is anyway about 10% off, it seams that you would want to keep the thyroid up to par to help avoid extra weight gain as well.

By: jonashpdx

jonashpdx — Thu, 09 Sep 2010 15:22:22 +0000

Archer’s been on a low-dose of thyroid meds for six months or so now… his numbers were still within the “normal” range but had been creeping up, so we consulted with an endocrinologist and our pediatrician and started him on the low dosage. haven’t had any difficulties at all (except with him choosing to TAKE it some days).

And part of the reason we started is because we were basically told that since he has Ds and is very likely to develop issues, there was no reason not to start it now and keep his numbers on the lower end of the range rather than wait for them to potentially spike and then treat after the fact.

By: starrlife

starrlife — Tue, 07 Sep 2010 23:53:09 +0000

I wish I knew more but ( so far) haven’t had much experience beyond my own I do know that soy is something that,ingested regularly, can throw off thyroid function so I have foresworn my beloved edamame’s. I agree with the independent research altho there is a plethora of conflicting info out there on thryroid issues. Hugs.

By: Amysilverman

Amysilverman — Tue, 07 Sep 2010 20:27:02 +0000

I just talked to the cardiologist — i really like him (he nixed the suggestion of an ADHD drug a couple years ago, so he’s not super drug-happy, not always anyway) and he said the recommended dose is low enough that it poses absolutely no threat. still, i think i’ll get a second opinion. so thank you noan, dr. dajani sounds great. and cate, no, we don’t have a DS clinic here and the geneticist we did see when sophie was born was beyond useless. i wish i did have someone like that!

By: cate

cate — Tue, 07 Sep 2010 19:55:24 +0000

I have no personal experience with thyroid, but I know a few kids who are on meds for it. My impression is that it’s a relatively minor thing, but I really don’t know. Especially with the cardio issues mixed in.

Ditto the second/third/fourth tenth opinion idea. What does her regular ped think? Do you see anyone specifically for DS, like a DS clinic or genetics or anyone like that, who might have an opinion?

By: Lisa

Lisa — Tue, 07 Sep 2010 19:42:18 +0000

We monitor Cooper’s thyroid at every annual peds check up but haven’t yet gotten a high result – so I don’t have any words of wisdom except SECOND OPINION! And maybe a third?

By: Noan

Noan — Tue, 07 Sep 2010 15:20:37 +0000

I have no answers but you seem to be asking very good questions. My experience is that specialist (cardiologist, endocrinologist, pulmonologist, etc.) don’t cross-pollinate too well. The trend in our medical system appears to be specialist learning more and more about less and less. I will spare you my cautionary tales but I do think it is ultimately up to the parent- after doing the research and asking the right questions- to connect the dots. Best of luck, Noan

If you are thinking of a second opinion, Dr. Tala Dajani is a wonderful pediatric endocrinologist. She worked at PCH for years but recently opened her own practice (www.pedendophx.com). She is smart and very kid friendly – has two young boys at home.

By: Kim Blake

Kim Blake — Tue, 07 Sep 2010 15:07:51 +0000

Amy,

I think it is a very good idea that you are putting this question out there. Does Sophie’s Dr. have a Down Syndrome child or family member and therefore knows what he is talking about from first hand experience or is he just giving yet another DS parent the same old advice?

What are Sophie’s other options? Do non-traditional treatments that work for non-DS thyroid patients work for kids like Sophie?

Can any of her thyroid problems be controlled by changing her diet? What about supplements?

Why is her doctor hugging you upon meeting you for the first time?

I love Sophie and hope that she has a long and healthy life. Keep your blog readers posted.

Thanks,
Kim