This is an entry I Posted last August and I would like to add some updates at the end:
My 8 year old daughter was diagnosed with encephalitis in Sept. 2007. All the available tests were run to check for the cause, but they all came back negative. The doctors just left it as " a probable unknown virus" and sent her to rehab. While in Atlanta for intensive rehab for 2 months her brain functions seemed to be getting worse. She started out with short term memory loss but then her language skills started declining. Now she has a vocabulary of about 15 words that she repeats over and over. As this was going on I was doing online research and found out that there is a connection between thyroid problems and encephalitis. I thought that had to be it since I have thyroid issues on both sides of my family. In fact, my thyroid hormones caused problems during my pregnancies raising the heartrate of the fetus ending in one still-born and one child two months premature. I took her to the Mayo Clinic since I wasn't getting answers through her regular doctors. A simple test found her Thyroid antibodies (TPO) extremely high. Sometimes this causes an autoimmune disorder and attacks parts of the body - in her case, her brain. They call this Hashimoto's Encephalitis or Steroid responsive Encephalitis. Steroids have helped reduce the antibody level, but we haven't seen much improvement with her mentally. She started IVIG treatments but we're still seeing little progress. I'm not sure what the next step will be but I just can't accept that this is permanent damage. Please, if anyone out there knows of a situation similar to Sydney's, please give me any advise. I also have a journal with the whole story on caringbridge.org -you can go to the site and type in sydneyfthompson -who knows, maybe there is some valuable information there for others.
Thank you
Jayme
4 months ago I took Sydney to the Dominican Republic for stem cell treatment. I have seen some small changes. For about a month her hyper-activity has gone through the roof though. I hope this is a by-product of activity going on in her brain. I'm trying to stay patient and will update with any improvements.
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My daughter and encephalitis
- By Jayme777
- Posted May 3, 2009 at 10:38 am · 3 replies
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- By Movelin
- Posted July 2, 2009 at 3:19 pm
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hello Jayme,
oure daughter (12 Years) has also Hashimoto's Enchephalitis since august 2008. There are symptomes witch are the same:repeating of sentences/words. But there are many other symptomes. High level steroids did help at first, but the H.E. came back twice. She had an EEG, it showed epileptic disorder. she gets Kepra for it and the repeating stopt. I would like to talk to you more, but now I have to leave.
- By Movelin
- Posted July 2, 2009 at 4:31 pm
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hello her am i again.
what is an IVIG treatment? and a Stem celltreatment?
Did she has an MRI? and a EEG. i think it's neccecery when she has H.E. We have started another treatment just recently, it's called Imunoglobulines (Dutch). for 4 days she has an medicin by infuus, it contains good antibodies from an amount of people and it catches her own wrong antibodies. after a month it most be repeated until de results are good, than can it mayby repeated after two months and so on.
oure daughter is very very tired in her head, she can't do anything because of her tirednes. and she has fears. de docters thought in the beginning , that she has something psychic and she went to a mentel instituut for children. She almost could not walk/talk/eat/sit anymore and her consciousness was low. I was in the convince that it was fysical and not mentell. thats wy we asked for a second opinion in another hospital. this doctor would surch for rear deseases. he had it right!! he diagnosed januari 2009 Hashimoto's Encephalitis.
- By Peregrine1
- Posted July 5, 2009 at 8:04 pm
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Hello Jayme777,
I don't want to confuse the issue, but I wondered whether she was ever tested for Anti-NMDA Antibodies? You may want to check with the doctors whether this type of encephalitis was ever considered. Many of the symptoms are common to the various types of encephalitis, but it might be worth asking.
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