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3 year daughter diagnosed with ADEM

PostPosted: Thu Sep 25, 2008 10:48 am
by inteldude
Hi -- My 3 year daughter recently diagnosed with ADEM. She was on IV Steroid therapy last week and oral prednisone started last thursday. She has left side hemiparesis. It has been 10 days since starting treatment but she is not fully recovered. I see 10% improvement in her arm. Is recovery slow in ADEM? She is very irritable and slow in response. Is that due to side effects of drug? Please reply.

Thanks,

Re: 3 year daughter diagnosed with ADEM

PostPosted: Thu Sep 25, 2008 7:48 pm
by hurdsarah
Our son was hit with a very severe case of ADEM in March and we are working on our recovery. He is improving but it has been very slow. From what our neurologists have said and what I have read in the research, people tend to recover over a few months, but improvements can happen up to years later. Our recovery is much slower than typical.

I know it is very difficult, but you have to be patient and see what the next few months bring.

Keep smiling. Hang in there.

Sarah

Re: 3 year daughter diagnosed with ADEM

PostPosted: Fri Sep 26, 2008 8:00 am
by Sheryl
I am more familiar with TM than ADEM but it seems likely that her mood issues are related to the medications. I know that steroids make me very emotional - huge mood swings which are not typical for me at all. So it seems likely that they'd have an even greater effect on a three year old. I'm so sorry that you have to deal with this. I wish you the best with her recovery.

Re: 3 year daughter diagnosed with ADEM

PostPosted: Fri Sep 26, 2008 11:54 am
by marieke
From what I have read ADEM can affect mood and affect, as it touches the brain, unlike TM which hits the Spinal Cord. Steroids though, also have side effects, headache, insomnia, mood swings, vivid dreams...

So it is possible that it is a combination of the two at the moment.

ADEM has a slow recovery rate, I think even slower than TM in some respect...

Hope your little one continues to progress. Keep her limbs supple and stretched with PT, you don't want her to get contractures.

Keep us posted.

Re: 3 year daughter diagnosed with ADEM

PostPosted: Fri Sep 26, 2008 2:15 pm
by inteldude
Thanks for replies. My daughter started having running nose and fever again since yesterday same symptoms she had before ADEM diagnosis. Should I worry? Is it gonna create relapse? She has 2+/5 power in left arm and 3+/5 in left leg. Is that good sign for recovery?

Thanks,

Re: 3 year daughter diagnosed with ADEM

PostPosted: Fri Sep 26, 2008 2:42 pm
by marieke
Not *likely* to cause a relapse, BUT can exacerbate symptoms and make progress slow down or regress until she feels better.

I say not likely, b/c no one can really know who will or will not have relapses. I don't know what the likely hood there is of ADEM relapsing myself, as I know TM better (as I have it).

Any signs of recovery is "good" recovery. Again, it takes 2 years to really know what you are left with... that's a long way off right now. You can still make gains after this, just smaller ones.

Re: 3 year daughter diagnosed with ADEM

PostPosted: Sun Sep 28, 2008 7:14 pm
by inteldude
Hi Marieke,

Thanks for your reply. Based on your below reply does that mean we should expect smaller gains after two weeks or we can still expect full recovery within 1 year?

-Divyang

---------------------------------
Any signs of recovery is "good" recovery. Again, it takes 2 years to really know what you are left with... that's a long way off right now. You can still make gains after this, just smaller ones.

Re: 3 year daughter diagnosed with ADEM

PostPosted: Mon Sep 29, 2008 7:10 am
by marieke
Full recovery.. I do not know. There is no way to tell. It can take a few years for recovery to happen for most people. Your child will likely recover over time, but as for full recovery, no one knows.. from what I have read, about 50% recover completely.

I hope that your child does recover completely!

Re: 3 year daughter diagnosed with ADEM

PostPosted: Thu Oct 09, 2008 12:55 am
by katiew
Hi, my sympathies are with your daughter and your family. I was diagnosed with ADEM in March 2008, though as an adult there are some differences in the etiology. But, I have also experienced changed mood and cognitive states, even well after I ended the taper from the steroids. Recovery is so unpredictable, and the literature I have seen indicates, especially for children, a very good prognosis. Keep in there, and give your daughter a hug from me.

Re: 3 year daughter diagnosed with ADEM

PostPosted: Mon Nov 03, 2008 5:48 am
by carrieanne
I was diagnosed/came down with (what is the proper way to say that anyway???) ADEM in Jan 2007. I am still recovering a little bit, I'll notice after a couple of months "hey, this doesn't happen anymore!", it seems to be an ongoing thing, you know? Steroids do cause moodiness as they tend to make you jittery and excitable, i hardly slept once i was on the oral prednisone. I also had trouble controlling depression even taking zoloft--I was already on zoloft for years before ADEM and I refuse to try a new med since I have three kiddos whom I homeschool and messing with antidepressant meds scares me. I still have trouble with depression but no where near as much. So yes, ADEM does make you a bit emotional in that it affects your brain a bit. BUT, I remember more things now, I am quicker on both figuring things out and with witty responses than I was even 6 months ago. Just please stay positive and focused and happy for her sake. It seems like a little thing but it really will make a lot of difference. I wouldn't have made to where I am now without the positive support I have gotten from both my boyfriend (soon to be husband) and my children (they are now 10, 7 and 4, they were 8, 5 and 2 when I got sick).
Oh, I also got a cold with fever and such while I was still in the hospital but it did not set me back any, I was just very vulnerable to any virus/bacteria for some time. I will send many positive thoughts for your little one to recover quickly and as fully as she can.

Re: 3 year daughter diagnosed with ADEM

PostPosted: Mon Nov 17, 2008 5:07 pm
by inteldude
It has been almost 2 months since my daughter Dxed with ADEM. Her recent MRI showed lesion is becoming smaller. She was given IVIG treatment Nov 3-8. Her inflamation has gone down by 70%. Her Neuro says that she won't recover fully based on whole picture but doesn't give clear answer. Should we keep hope? She has improved 25% so far. Will she get ever better? :-s

Re: 3 year daughter diagnosed with ADEM

PostPosted: Tue Nov 18, 2008 10:45 am
by carrieanne
inteldude wrote:It has been almost 2 months since my daughter Dxed with ADEM. Her recent MRI showed lesion is becoming smaller. She was given IVIG treatment Nov 3-8. Her inflamation has gone down by 70%. Her Neuro says that she won't recover fully based on whole picture but doesn't give clear answer. Should we keep hope? She has improved 25% so far. Will she get ever better? :-s


Okay, yes, you should definitely keep hope, you must! She may never get all the way "better", meaning as though she had never been affected by ADEM, there may be some bladder/bowel issues and the like that are just there. I really do not think the neuro should say something like that to you and not explain him/herself, that's just a bit f#cked up, pardon my language. And from what I am rememebring of my experience, 2 months is not very long at although two months aftern my ordeal, even 2 months after getting out of the hospital, I thought I should be back to "normal"--i.e. the way I was before--but I wasn't. I'm still not but I am way way WAY better than I was then, for sure. The only major problem I have now is with my bowels but there are other factors there as well.

I will keep your little one in my thoughts.

Re: 3 year daughter diagnosed with ADEM

PostPosted: Fri Nov 21, 2008 4:35 am
by Conor
Hi Inteldude

Based on my limited knowledge of ADEM (father of an 8-y-o boy who has had 3 episodes), there appears to be a very wide variance in the severity of attacks and speed of recovery and each case is virtually unique. In addition, the level of medical research into the condition seems to be woefully inadequate so even the best doctors can't give definitive answers.

From what I have read, it does generally appear to be the case that kids tend to recover better and faster than adults, so I think you should try to remain optimistic and hopefully your little girl will prove the doctor wrong.

Conor

Re: 3 year daughter diagnosed with ADEM

PostPosted: Fri Jun 26, 2009 4:46 pm
by scottsanders
hi from oklahoma


father of son with adem dxed at 13 months, hosp 3 weeks, rehab center 2 mo. He will turn 2 in July. He can not stand or walk but we still see improvement. I think he will get a lot better it just takes forever. Good luck and god bless!!!!!!!!!!!!



scott