Hashimoto's Encephalitis

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

By qmax
Posted August 10, 2008 at 4:14 pm
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Hi Jayme 777. Our son is also 8 years old and we have been told he has a virus and it maybe encephalitis. He is tired all the time, is becoming very unbalanced, his eyes are very vacant and he is shaking when he laughs etc. He was very active before this strated and doing very well in school. The doctors but him on steriods and he was a very tall thin child and he gained aprox 28 lbs in 6 weeks. His family and friends tell it was him. His skin was so tight it hurt him. We are slowl taking him off the steriods as he was having a hard time with them. As he comes off them all his symptons a coming back worse and worse. The doctors keep doing tests but can't find out what is wrong. Maybe as we search for answers we can keep in touch as you probably feel as helpless as we do watching this happen to our children.

Qmax

By Jayme777
Posted August 10, 2008 at 4:50 pm
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Qmax,
Thanks for replying to my entry. I'm sorry to hear about your son. All I can say is keep searching for answers because I'm finding that most of the doctors that we've dealt with don't know much about Encephalitis or how to treat it. My daughter gained a lot of weight as well, about 30 pounds. She has been off the steroids for about a month now and we are giving her Cellcept. She is just starting to look like herself again. With her the steroids are lowering her TPO (thyroid antibody) levels and I am afraid that they will go back up again. It's a horrible feeling for a parent to be so helpless in making their child well. Good luck and keep in touch.
Jayme

By KarenSueHam590
Posted August 11, 2008 at 9:31 am
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Hi Jayme,
Our daughter when through exactly the same things! Her neurologist found that the virus was gone, but that her own immune system was attacking her brain. He did administer high doses of steroids and IVIG. We saw results within hours. He had a name for this, but for the life of me I can't remember what he called it. But he said similiar cases were found in Japan, where after the virus was gone, the children were regressing. I would think the Mayo Clinic would be able to find this, if that was the problem. Don't give up! Keep searching and keep the faith!

Karen H

By dannon
Posted August 11, 2008 at 1:34 pm
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Hello,
First, may I say I appreciate the depth of your anguish over this.
Over the years, there have been a few children here Hashimoto's Encephalitis. Some of the treatments/procedures sound like they are right out of science fiction novels.
My recollection is it has been the Mayo Clinic most of these children ended up at.
I'm not sure from your post though (and it may be my reading problems) if Hashimoto's Encephalitis is the present diagnosis.
Has there been any discussion of Plasmapheresis?
That's been done a few times here to children with Hashimoto's and Creutzfeldt-Jakob disease.
-dannon
Meningoencephalitis-Bacterial '98/'98

By Jayme777
Posted August 12, 2008 at 3:14 am
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Hi Karen,
I'm so glad to hear that those treatments worked so well for your daughter! Did they administer both treatments at the same time, or was it the steroids first then the IVIG? Which one helped her recover so quickly?
Thanks,
Jayme

By Jayme777
Posted August 12, 2008 at 3:24 am
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Dannon,
Thank you so much for your reply. Yes, the present diagnosis is Hashimoto's Encephalitis. I have spoken with her doctors about plasma exchange but they only want to do that as a last alternative. It seems to me though that it may have to be the next course of action since the steroids and IVIG don't seem to be helping and I don't know of any other treatment for this. Do you happen to recall if the plasmapheresis worked for the other children you know of with H.E.? Do you remember how much recovery they had?
Again, thak you for any information.
Jayme

By KarenSueHam590
Posted August 12, 2008 at 8:46 am
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Hi Jayme,

Amanda became ill in March of '04. She had to have a craniotomy, where they removed a piece of her skull to allow room for the brain swelling. She went to rehab from the hospital the first of April. Then around the last of April, first of May, she began regressing. She could not walk, eat, sit up, and began keeping her eyes closed. Then she would lay and just yell one word over and over and over. It was horrible! Our insurance company was pushing for her to go home, but she was not well! So our neurologist stepped in and got her back to the hospital. They tried one surgical procedure, trying to see if there was build-up of fluid in the brain. They tested it and the virus was gone, but her brain was swelling. So on Saturday night around midnight, our neurologist came into her room and told us about the cases in Japanese children, where the same thing was happening. He immediately started her on IVIG and mega doses of steroids. By the wee hours of the next morning (which was Mother's Day), she began talking! And she kept talking and would not be still! She had to ask us SO many questions. She talked until the next morning. So we saw results probably within hours. But as far as recovery, it took a great while! She had her bone flap replaced in August. So she missed a year of school, but had home-bound tutoring for the next year. It took a lot of time and patience! BUT, she graduated from high school this past May with a 2.8 grade average, and she will be starting college classes on August 25th. It's been over 4 years, but we are still seeing small improvements. And let me tell you, it's not been a straight uphill journey. There have been lots of dips and hills along the way. And every case is different! There are several cases where people have not had to have surgery and have come out with hardly any effects at all. And then there are others that are worse. But we have been diligent and just refused to accept anything any less. We constantly researched on the web and worked with her. And we have prayed and sought God's word (Jeremiah 29:11 is our verse!) and have had great support from our church and family. All of that combined is what's brought her so far. I just want to encourage you and never give up.

By KarenSueHam590
Posted August 12, 2008 at 10:34 am
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Hi Jayme,

They actually did this at the same time. The doses of steroids were very high, to stop the swelling. She gained 60 pounds, it seemed, overnight! But her brain swelling went down. And the IVIG! It came in huge glass bottles. But they did admnister them both at the same time.

karen

By MichelleN
Posted August 12, 2008 at 12:58 pm
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karen I'm really glad that Amanda graduated high school and will be starting college. I understand the nuero having to fight things because the one in the hospital had to do that for me as well. I hope she has a good neuro now.

Michelle

By KarenSueHam590
Posted August 12, 2008 at 1:23 pm
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Hi Michelle,

Yes, thankfully she had a wonderful neurologist. When she had begun to regress, he had been out of the country and had been working on Amanda's case the whole time. As soon as he got back, he came into her room around midnight and started this new treatment. He was been WONDERFUL! We have referred many other patients to him and he has also worked hard for them. All of the nurses had nothing but good to say about him. And you know if the nurses like a doctor, then he's got to be good! She still sees him yearly, and he's always very happy to see her progress. He always gives her a big hug. We love him!

Karen

By dannon
Posted August 12, 2008 at 2:23 pm
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Jayme,
I will try and see if I can figure out who these people were.
Unfortunately - I don't hold on to things for long once they are no longer in the forefront.
It won't be right away - but my hope would be to put you in touch with one or two people who have walked this path.
I does look like you have Karen here! That's great!
I can't tell you about recovery. I'm just recalling staying alive.
Lets see if I can't figure out someone in the next couple days for you ...
be well,
-dannon

By dannon
Posted August 12, 2008 at 2:47 pm
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Jayme,
it is also possible I am confusing Rasmussen's with Hashimoto's as far as it being the children.

Here are a number of children's histories
There are contacts to the parents.
http://www.1halloween.net/encephalitis/html/kids.html

By kelsieann2006
Posted May 22, 2009 at 3:45 pm
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I dont know if this is going to help much but when I got out of the hospital I was on 27 different medications. I was on steroids and anti seisure medicine. I gained a-loooot of weight but once the doctor started to reduce the meds, my memory started comming back. It was like my brain was cloudy from the medication. Every thing came back to me and my short term memory came back once i was off all meds. i think the bigest one that was clouding my memory was the anti-seisure meds. It could have been the steroids though. I hope this helped you. I know she cannot go completely off the meds but maybe reducing a little may help the cloudyness of the brain. Its crazy how med is supposed to help (and does) but also makes something else worse. Take care. Kelsie

By Debe
Posted June 6, 2009 at 8:24 am
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Moms

You are the best medication for your child. My sister had E 54 years ago. She is now 56 doing well. Back then Mom did what she could pushed my sister. Sis's medication consisted mostly of seizure medications which she still takes now. Was a long long process. She had to learn to walk again. Plus she basically self taught herself.

If you need to vent or have a question I may be able to answer I will try. I was a little girl when this happened. But I have seen it all, to this day I support my sister. Very few people understand E especially those who had E years and years ago.

lardeb144is@hotmail.com

Welcome to Inspire!

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