Hashimoto's Encephalitis

[Jayme777]

My 8 year old daughter had encephalitis a little over a year ago.  The tests for the cause such as a virus or bacteria all came back negative.  The doctors assumed it was an unknown virus and sent us to two months of rehab - she had lost her short-term memory at this point.  We kept seeing more and more of a decline in her mental status and I felt there was something still attacking her brain.  I did research and found out that there is a connection between encephalitis and thyroid problems called hashimoto's encephalitis.  My family on both my mother and fathers side have had thyroid issues and I had mine removed with iodine radiation actually twice - once in 1993, then it supposedly grew back so I had the radiation treatment again last year.  I also had complications in my 2 pregnancies due to my thyroid hormones attacking the fetus.  This resulted in one stillborn and one baby 12 weeks premature.  This premature baby developed well and has had no health issues until now.  I took her to the Mayo clinic and sure enough her TPO level was very high.  She has had steriod and IVIG infusions which have lowered the TPO level some but every time we try to lower the steriods, the level goes back up.  The MRI and PET scans show that her brain is still deteriorating and I feel so helpless.  She has gone from a normal happy 3rd grader to a child who can only speak about 15 words and doesn't seem to have any memory.  I am devestated, but I know someone out there knows something that can help her.  This is such a rare condition that her current neurologist can only go by other case studies.  If anyone has any suggestions or has heard of a similar case PLEASE let me know.  Thank you!

[JulesK792]

My 17 year old daughter was diagnosed at Mayo a year ago with Hashimoto Encephalitis.  She had the same deteriorating symptoms and within 3 weeks on Predisone she was amazingly near normal.  She continues to be on a steriod pulse (dose on only Sat and Sun) and this keeps her "normal" without the awful side effects of daily steriod use.  I hope this helps.  Dr. Lily Wong was her neuro at Mayo in Minnesota.

[KD9ER]

This article is from 2002!  But it touches on this and you can certainly try to contact the two members who posted.  There is a support group listed in the post as well.  Survivors are the best to talk to.  They can really help.

http://www.medhelp.org/forums/neuro/messages/31857.html


Ok just noticed you are already a member of Encephalitis Global.  :)  That's good.  Let's see if I can't find you anything else that may help...

This one is a bit technical, but it shows some alternates for treatment using a combination of meds to single meds.  Although the authors seem to not know whether or not there is such a disease/disorder as Hashimoto's Encephalitis.  I think they perceive the variations of the condition to be too vast to be considered the same disorder although the study shows results proving otherwise.  But I say, "Welcome to the Wonderful World of the Thyroid".  The symptoms are so vast among current patients that most of us are treated like we are psychotic rather than having a treatable condition.  So take this one with a grain of salt, but it does have some good medicine info.

http://archneur.ama-assn.org/cgi/content/full/60/2/164



--I hope this helps for now.  I will keep looking but a lot of the info out there is either the same or there isn't much to report...3 lines or less.  So I can see why you are at a loss.  I think the more people you find out there to tell you what they went through the better.  I would post in the Pediatric Endocrinology Expert Forum and maybe in the Neurological Expert Forum and Community.  There might be a few other Forums on MedHelp that would be of some assistance to you and it's worth posting your thread multiple times to see what you get in response.  Maybe another member in this Forum can help too.  I really hope you get the answers you need soon.  Your little girl deserves it.

You all are in my prayers.
-K

[KD9ER]

You may have found this link, but please read it.  There is hope but from what I read your daughter will always have to be on a particular dosage of Corticosteroids (Prednisone).  But please read this and follow the link on the page to Beverly Seminara's webpage.  I think if you can get the doctors to look at the collective case studies, disappointingly there are only 34 published case studies since 1966, but every bit counts.

http://thyroid.about.com/gi/dynamic/offsite.htm?zi=1/XJ&sdn=thyroid&cdn=health&tm=112&gps=167_800_1020_599&f=00&su=p284.9.336.ip_p726.4.336.ip_&tt=2&bt=1&bts=1&zu=http%3A//www.thyroid-info.com/hashimotos-encephalopathy.htm


I will continue to look.  I really hope this helps.

[KD9ER]

Could you also post this in the Pediatric Endocrinology Expert Forum?  That is overseen by docs and I know they could be a big help too...if not maybe they can refer you to someone else...a colleague or something.  It's worth a try.  It can be difficult posting in a doctor forum, but keep trying.

I'm still looking for info, but this came to me so I had to post before I forgot.

[KD9ER]

I'm so sorry to hear this.  Although I have not heard of this, I will help you do some reseach and post anything I find!  I don't know everything you're going through but I have a little boy who is almost 2 and was just diagnosed as Autistic.  He had words over 7 months ago and lost all of them!  I know that feeling.  I will keep your family and your little girl in my prayers.

I promise to post back with anything I find.  I know any little bit helps.  Maybe some
other members will hop on here and see if they can post anything or help with research.

-K