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#1 Nov. 8, 2017 10:12:32

wells1081
Registered: 2017-04-20
Posts: 1
Profile  

12 year old with GD and moderate / severe TED

Hello,
Our daughter was dx 1 year ago with Graves. Shortly after that TED. She is now slowy losing vision and we are discussing orgital decompression sx. We have several surgeons onboard each with varying approaches. All are well known, respected surgeons. One today just called and discussed the idea of radiation. Just curious as to who has a young child with this similar condition? We are struggling and she is emotionally struggling and most recently withdrawn. Any one else with a similar story that we could communicate?

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#2 Nov. 8, 2017 16:07:33

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 3993
Profile  

12 year old with GD and moderate / severe TED

Hello and welcome - Most of our regular posters here are Graves' patients themselves, but you might use the “Search Posts” feature to look for keyword such as “parent”, “daughter”, etc. - and then you can use the Private Messaging system to connect.

This video might also be of interest; it's from a seminar that the GDATF did with the Children's Hospital of Philadelphia in 2014:

https://www.youtube.com/watch?v=ZTOU7SsvvQE&list=PLkmq2Wfl__LNKtIAYwBbAGQri3bVmcp1w&index=2

If the above link doesn't work because it takes up 2 lines, you can go to YouTube, search for our screen name (GravesAndThyroid) and then go to the “Playlists” section.

Wishing your daughter all the best - this is a difficult disease for adults to deal with, particularly in social situations, so I'm really sorry she is going through this.


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

Edited Kimberly (Nov. 8, 2017 16:07:52)

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#3 Nov. 9, 2017 04:43:25

Liz1967
Registered: 2014-02-25
Posts: 202
Profile  

12 year old with GD and moderate / severe TED

I had severe TED and had both orbital radiation and orbital decompressions. I was losing vision also. Sometimes radiation is used after decompression failure. Orbital radiation carries some risk and is not generally used in the very young but each case has to weigh risks vs benefits. I had IV steroids, followed by thyroidectomy, then orbital radiation and oral steroids, and a year later, orbital decompression. The most important thing to do is to find ophthalmologists very experienced with Graves. If you are near one of the centers known for this, like Kellogg in Michigan or Univ of CA in San Francisco. Shiley, Wilmer, Emory, etc, usually a big university, I would go there. I had radiation done at Emory in Atlanta, rest at Kellogg. This disease is hard for an adult, I cannot imagine how difficult it is for a child. It took a lot of research to decide where to seek treatment but despite the severity of my TED, my rehabilitation is complete and I am left with minimal effects, so things certainly can get a lot better. Best of luck.

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