Today Brianna had a follow-up weight check from January and we got her thyroid bloodwork results. Also, Micah was supposed to get vaccinations today but instead it became a follow-up from his hospital stay and we'll do vaccines next week. We also got his blodwork results.
Brianna's gained nicely and is 19lbs, 15oz! ALMOST to the 20 lb mark!
Micah is 15 lbs 13oz (I think) and we're so glad with this weight gain! Almost 5 lbs now!!
BOTH of the kids' TSH numbers were high, but their T3 and T4 were fine. They'll both need to see an endocrinologist to monitor and possibly medicate them since the TSH being off has some significance. Here's how it was explained to me:
The TSH is the measure of what the brain sends to the thyroid telling it to produce the T3 and T4. So if the T3 and T4 are correct, then the thyroid is functioning properly. On the other hand, if the TSH is raised, it means that the brain is having to send extra info to the thyroid in order for it to produce correctly. This could go on for a LONG time, but what it means in practical terms is that they both have the "potential" to develop hypothyroidism, or the condition in which the thyroid doesn't produce enough hormone. Some endo's will want to medicate before hypothyroidism develops, some will want to just watch it, but either way the ped wants both kids to see the endo to be monitored by them.
Emma's thyroid testing hasn't been done because we thought we'd do it at pre-op and didn't want to have to stick her twice... but... now we might just go ahead and do it since surgery is unsure and not scheduled. When we did get her blood drawn she had a little lower platelet level and her WBC count was raised a little. The doctor said that it's due to her heart condition and the blood mixing.
So... a referral to the endocrinologist, a follow-up next week for Micah and Emma to both get vaccines, and some blood work will be ordered for Emma next week!
OH-- but I have to share, I was very pleased with the doctor's office this morning. I had a 9am appointment for the 2 kids and ended up bringing Emma with me too. I called the office, explained that Micah is sick and couldn't be in the well room, but Emma is fragile and can't be in the sick room. I asked if we could go right into an exam room when we arrived and they actually did it :) The kids were great and the doctor was good about spending enough time in there with us and letting me ask questions, explaining things. I really like that doctor... if things don't work out with the other doc at that office I'm glad to know there's another doc there that I wouldn't mind as our primary!
Sounds like you had a good doctors appt. Very imformative. Can't believe Micah has gained so much, this is wonderful! I know it is very comforting for you and Mike to have a doctor that you trust and like. Good luck with the appts. next week.
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Mom C
I just wanted to share that I added Emma's picture and link to my blog. She is such a precious child and my heart hurts for her and your family. I am so happy that she is getting so much love from your family and from our heavenly Father. I pray for all of you often. In fact, I was up with our baby last night and could not get Emma out of my mind. Prayers went up for her from Dallas!
ReplyDeleteI was so glad to see that you and Micah had left on Saturday! I hope that all your little ones are doing well as can be! Good luck with the upcoming appointments.
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Kathleen
Wow- and I thought I knew how to stay busy,lol! Glad that the appt. was a good one and hope everything turns out ok with the thyroid. I know Dom had one test that the tsh was high but when we checked all 3 (tsh,t4,t3 and the 'free' ones), everything was a-ok. I hope the same holds true for your sweet peas :)
ReplyDeleteCathy and the crew
Sounds like you have a great pedi!
ReplyDeleteMy brother has a high TSH, but normal T3 & T4 levels. From what our doctor says (who sees tons of DS patients) it is very common in kids with DS.
My brother has been dealing with this high TSH since he was 8 months old - he's now 3 years old.
His doctor hasn't put him on any meds, because he isn't technically hypothyroid. If he puts him on meds, he could possibly send him into hyperthyroidism, which is must worse than hypothyroidism, from what I hear.
So, we've researched some things and found some ways to help lower the TSH naturally. We give my brother Coconut Oil and it has really helped lower his TSH. We give him coconut oil that has the coconut flavor in it, so it doesn't taste bad. You could easily blend it into Micah's bottle, I'm sure. We mix the coconut oil with my brother's vitamins he takes.
Giving my brother coconut oil brought his TSH down from 6.6 to 3.6. Hopefully we can get it all the way down to the mid 2 range.We only give my brother maybe 1 teaspoon or a little more a day.
I'd be glad to email you the info on where we get the coconut oil, if you'd like :).
Qadoshyah
qf@gotdownsyndrome.net
Cheyenne was only 3 when I was told that she would soon have hypothoroidism after a blood test. She is 15 and has no issues with it. So I would think it was better to wait and watch it. Mercede does take meds because she does have it.
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