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Old 05-12-2015, 08:26 AM   #9
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Join Date: Jul 2014
Location: NJ
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Re: Child with Down Syndrome experiencing difficulties

Originally Posted by Clyde1 View Post
Hi BriMom,
It has been a while since I was on HB. I got on yesterday and responded to a pm from trailrunner. The information trailrunner requests cannot be posted due to board's requirements for length of posts. Hopefully, she/he will get in touch, again.
BriMom, our sweet girl passed away in January. She was just too frail by the time we got a diagnosis (in June 2013). I am so glad that you were able to get your daughter diagnosed and treated. From your posts, I understand that she is receiving steroids and IVIG. That appears to be the standard treatment, and what I have read, it works well when the diagnosis comes soon enough, as it sounds to have for your daughter. Over time, after we finally got a diagnosis, we were able to get a more accurate time frame for the beginning of her symptoms. Heather's symptoms became obvious and severe in very early O8; however, after more research and reading, we came to realize that she more than likely was having insidious symptoms as early as 02. In early 02, at her yearly cardiology evaluation, it was discovered that her heart-rate had plateaued at a lower lever during the previous two years' evaluations. There was never a reason for it able to be identified by her very capable cardiologists, and in 06 she received a pacemaker; in 05, she began to have severe depth-perception problems, for which she later had surgery. Both of these conditions can be early symptoms of HE, (or "autoimmune encephalopathy," as the medical profession prefers it now to be called.) We attributed her pacemaker requirement to her age and because she had had two open-heart sugeries; her vision issues began at age 38, an age that vision issues commonly show up in the general population. Now, it appears that these may quite possibly have been very early symptoms of HE. We miss her; she was the greatest blessing in our lives.
BriMom, I learned alot these past seven years, and I hope that it has helped some who read "the board' get a diagnosis. Know that I will gladly share all that I have learned with any parent who is searching for answers. Good health and blessings to your precious daughter and you.
Dear Clyde; Thank you for all that you have shared with me.
I am deeply saddened by the loss of your daughter Heather. Please accept my heartfelt condolences, she will not be forgotten. Only faith in God will fill the void.
Sincerely, Maryann C.

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