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Hashimoto's Encephalitis

Movelin
  • By Movelin
  • Posted July 2, 2009 at 5:37 pm · 14 replies
  • Shared with the public
0 Recommendations

hello,
oure daughter has Hashimoto's Encephalitis. she is 12 years. i would like to talk with people who has this auto immune disease or has a familymember with it.

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Weakness Prednisone Encephalitis Keppra

14 replies

cbrocket

Hi My neuro suspects that I have HE or something closely related to it. They like to call it steroid responsive encepahapathy The cases that I have heard of with children have seemed to work out better than for adults. One person I know of is currently in high school taking regular courses successfully after being dagnoses for one year. SHe is currently being treated with pulse prednisone. 25 mg. on saturday and sunday and no prednisone the rest of the week. she is not suffering from the pred side effects. I'm not doning as well. Im currently taking 20 mg of pred every other day. Ive been diagnosed for 6 months but sick for 1 year
rocket

Movelin

hello,
thank you for giving a reply so soon.
i'm don't understand the sentence: I'm not doning as well. do you mean : i'm not doing as well? (forgive me mij inglish is not super)
oure daughter got twice 2mg/kilo prednison for a while, thats a lot for a girl of 11. she did it well, she could bicycle and horsebackriding again and she was so happy she had a lot of fun. but after three weeks it's gets worse again. she has increase weight for 40 pounds! and she has strae all over her body. We didn't want her to have prednison again.
now she gets IVIG, once a month. she got it once now. its very unsure how this disease will react on this treatment.
Did you get always prednisson every other day, or was the dosis at first different?
wat are youre symptomes?
how high si the level of antibodies in youre blood?
my daughter her's was 730.
oure daughter is also sick for a year and diagnosed in januari 2009. she is soooooo tired, has no energy, is anxious about a lot of things. she could not sit/talk/eat/walk anymore. she can do a lot of things now but very briefly, for a very short time.
I ask my doctor about this pule prednison treatment.
thank you for this information.
i'll hope we can talk later again and i hope you will be better!!!!!
greetings movelin

cbrocket

google a
has a new support group for autoimmune encephalitis almost everyone there has hashimotos. There is a larger support group called helps that is just for HE. these groups are both active and will be a great help to you. You can get input about ivig treatment , plasma therappy and others. not everyone can take the prednisone although it is the first choice

Istarted on pred nisone 60mg every day. I have tapered off from that. The pred can be very hard on you. I have gained 20 lbsbut I have stopped gaining.

I mean I am not doing as well as the girl I was telling you about. I can't do very much
rocket

rocket

Movelin

hello rocket,

can you give me the titles of these new supportgroups??
thanks, and hopely we talk later again. I hoop you feel better.
gr. movelin

IngridGuerci

I, too, would be very interested in these groups. Can you give us the website info?

Ingrid

cbrocket

autoimmune-encephalopathy@googlegroups.com

this is the newer of the two groups

cbrocket

HELPS@topica.com

this forum has been around for years but, its glitchy. It can be hard to get on to

rocket

Jonn40

I was diagnosed with Hashimoto's encephalopathy in 2005 but I had it longer. My symptoms were speech problems and left sided dysfunction. What are her symptoms? Autoimmuneencephalopathy.org is a good group to be on.
My Best
John

cbrocket

Thanks Jonn I just checked out the site and am waiting for a password.
rocket

Movelin

hello Jonn,

the main symptom is: very, extreem, tired. it gets worse when the disease get worse. she almost can't walk, read, she tellyvisoin. this is to much stimulus incentive. to many noises she can't bare. she is most of the day on her bed, alone. she prefeers to be allone, whitout the sounds of talking people. she can't sit up straight and sometimes she can't keep her head up straight. talking is too weary to. before the Keppra (medicyn) she has a period that she repeating senteces. this came because the epileptic disoarder, also a symptome af the disease. this epileptic wasn't on the surface, and she hadn't absances. when she had her worst time she couldn't not open her mouth for eating, cheawing was difficult to. for weeks she got liquid food through the nose.
she was almost unconscious. people don't understand her, they can't image wath it's like to be so tired that you can't do anything. sometimes she can't use her legs or hands. the brain can't transport the signals to the limbs.
she is often afraid, this is a symptome to.
she had prednison, very much (2 mg/kilo body weath) and IVIG. now she gets pulse prednison (mythyl prednison). 3 days one hour 900mg mythyl pred. I.V. (directly into the blood) once a month. 11 september she gets the second cure.
the first didn't do very much... we are afraid this wouldn't help to.
the best doctors of the country trying to help her, but they are standing for a puzzle! they also get info from other doctors all over the world.
What a ......disease!!!

Movelin

hi cbrocket,

i quess it's you in the wheel chair on the foto?
how are you doing right now. can you tell me something more about youre symptomes, the dure of being sick a.s.o. are you getting a treetment now?

I havent seen on these sides, because it cost so much energy and i am doing not so well recently, because of the tensions of the disease and oure daughter being so ill. it hurds so much to see youre child suffering.

cbrocket

Well, I used to watch the TV all day on pause. I didn't like the noise or too much movement. But everyonce in awhile I could move it to anew picture. Then the day would be over and I was supposed to go to sleep. It seemed like every minute it was mealtime and I was supposed to eat. I would try to eat a bite but I was too lazy to actually eat. I felt really hungry alot of the time but when I got food I couldn't eat it. I couldn't talk on the phone. Too hard. Its been a year and 2 months since I got ill. Now I watch TV all day. I get up in the morning and read the newspaper at the kitchen table. I may empty the dish washer. Then Im tired and I sit in my chair. I can walk but I have left sided weakness. But I can be normal for a little while. My hubby feels like he has me back. because I can pay attention to him and interact. But, I am not useful and I do not contribute to the household. You make me realize when you talk about your girl that I have gotten bette. I can write to you after all.

rocket

cbrocket

about treatment. I take 30mg prednisone every other day and I take armour . For me symptoms have morphed over time. I used to collapse and get paralyized this has morphed into left side weakness. I still collapse too but I recover in moments. I really believe there is a hopeful prognosis for your little girl. Kids with HE can be very resilient. Her difficulty with noises and excess stimulation will improve with time . At least it has improved alot for me.. After I was sick for a month or two a started having psuedo sezures that were prompted by too much stimulation and trying to hard to sit in a chair. If this happens to your litle girl don't be too alarmed this improves too

rocket

Movelin

it's a comfort to oure doughter (and to us) that somethings are getting better with you, it means that her chances are good. she has been good for a while too, but got a relapse. What a disappointment was that.
what i don't untherstand is, that you got 30 mg prednison every other day, according to oure doctor a little dosis pred doesn't help. he said a little dosis is given after a great dosis to get the bijnier (by- kidney??) started.
in which hospital are you being treated? and whats the name of youre doctor??
oure doughter asked me if you have/had fears? she is often affraid.

what are pseudo sezures??

greetings movelin

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