Comments on: Thyroid Treatment http://einstein-syndrome.com Down Syndrome with a Positive Attitude Mon, 23 Jan 2012 20:35:47 +0000 hourly 1 http://wordpress.com/ By: Pamela Feres http://einstein-syndrome.com/health_medical/thyroid__/#comment-1987 Sat, 19 Jun 2010 23:58:48 +0000 http://einstein-syndrome.com/?page_id=399#comment-1987 I have two boys 20 years old and 4 years old with DS. Both were on Thyroid. BUT once I used zinc and iodine for a period of time their need for thyroid went down from 5 pills to 0 pills for my 20 year old and from 3 pills to 1 pill for my 4 year old. As well I am looking into Fanconi syndrome more and more because it seems when you have mineral losses, short stature and many other “Fanconi syndrome” problems it may be a kidney problem that creates much of the problems with health and intellect. I give rehydration drinks, cordyceps an organic mushroom that helps kidneys heal, B12, B6, Zinc, iodine, and now potaba (potassium and special B suppliments, both my boys are doing so much better. When something is called syndrome it means unknow etiology! Searching for the etiology and why our kids have purple hands and feet which is now…cured by potaba! In fact many other abnormalities in health need to stop being ignored in our kids so all these clues can be put together to find out what is really going on. IT is not simply a down syndrome thing….that doctors say to us!!! I have learned NOT to accept this and search for doctors that can look past their nose to find answers to the health issues in my kids!

PKU desease was a problem of intellect! It has been discovered that protein breakdown is the problem and the intellectual problems with these people can now be supported adequately with proper diet. Fragile x was found to be a problem with proteins as well…..maybe soon they too will have better intellectual capacity with this knowledge.

Cheers to research and finding answers for our angels to be healthy, happy and as BRIGHT as can BE! May all these clues that us as mom’s find be the beginning of new found answers!

]]> By: Megan http://einstein-syndrome.com/health_medical/thyroid__/#comment-963 Thu, 09 Jul 2009 20:07:20 +0000 http://einstein-syndrome.com/?page_id=399#comment-963 My son is only 4 months old, and was doing astonishingly well until 2 weeks ago when we found out during a swallow study that he was silently aspirating. That led to an immediate hospital stay, a feeding tube, another hospital stay and half a dozen doctor visits – all in just 2.5 weeks! Needless to say, we no longer think we “dodged a bullet” with a super healthy child with DS. But such is to be expected and we have been rolling with the punches, so to speak.

During this journey, one of the doctors had Jack’s thyroid checked. His levels were normal, but his TSH was “slightly elevated”. That was about 2 weeks ago. The Neonatologist at our NICU follow up clinic last week came in and told us not to worry because the elevated TSH was so minimal we should not be concerned.

What is worrying me is that – call it mother’s intuition – I know Jack is only 4 months old and “supposed” to be behind developmentally due to his DS, but I feel like he has truly slowed in his growth and development in the past month or so. He is not gaining weight as he did early on, he was great with head lifting and tummy time until a few weeks ago and now seems more and more floppy by the day. My husband is taking him to the endocrinologist next week because I have to work and cannot be there, and I just want to make sure we are aggressive about this. The problem there is that my husband likes to err on the side of caution and I dont know that he will agree that we should push the doctors.

Thank you all for your comments and stories…it makes me see how much more I need to read and study about DS in order to be a better advocate for Jack.

God Bless!

[Megan, insist on getting copies of the lab results for yourself. Don't settle for a report that anything is "slightly elevated" or even "ok." You just must get copies for yourself. "Caution" means getting the information so that you can make an informed, cautious choice. And have you looked into nutritional intervention? Zinc and selenium are almost always low in DS, and both are needed for good thyroid function. -Miriam]

]]> By: Jill http://einstein-syndrome.com/health_medical/thyroid__/#comment-664 Fri, 24 Apr 2009 22:22:20 +0000 http://einstein-syndrome.com/?page_id=399#comment-664 We have a beautiful little girl nearly 4(next month). We are currently waiting for her appt. with her doctors and more lab work for her thyroid.
Thank you for the updates. So much to learn. She’s quick with learning things but then stubborn in te way she learns it. I did learnthat that;s typical of a down’s kid. Once they learn something a certain way that’s how they want to learn everything else.
So much more to learn regarding her thyroid and the other 14 on the list.
Most Sincerly,
Jill

]]> By: 15. Treat the Thyroid « Einstein Syndrome: Down Syndrome with a Positive Attitude http://einstein-syndrome.com/health_medical/thyroid__/#comment-637 Mon, 20 Apr 2009 03:47:42 +0000 http://einstein-syndrome.com/?page_id=399#comment-637 [...] Thyroid Treatment [...]

]]>