Acute Disseminated Encephalomyelitis (ADEM) Support Group

Parents with kids who had ADEM

#1

Hi fellow parents - my son was diagnosed with ADEM when he was six years old, he is now nine. We continue to suffer from the effects of the disease, including episodic sadness, head pain, stomach pain, difficulty focusing when i. loud or busy environments, and fatigue most days. We are at the hospital now getting another follow up MRI as I write this.

Does anyone have any interest in setting up an email group or having a group phone call to talk about different strategies of how to deal with some of the symptoms that follow an ADEM attack? As a parent I would love to hear what others are doing and of course share some strategies as well.

Christina

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#2

My daughter was diagnosed August 2016, just a couple of weeks before her 6th birthday. From everything that I have read on this site her case was pretty mild in comparison. She recovered very quickly with the steroid treatment and overall seems to be doing well. The main thing that I have noticed is a change in her behaivor. She seems to get upset a lot easier both angry and sad. She does also complain of her stomach hurting. So far, I don’t think her behaivor is causing any problems at school or at least the teacher hasn’t contacted me about anything. I hope that doesn’t become a problem as she gets older.

#3

Sydkate,

Most of us have residual emotional concerns. Anger and sadness, I feel comes from frustration. Try and help her understand what and where her anger comes from. Try and find ways to help her put her feelings into good actions. I hope that makes sense. Give her some time, but stay on top of it. You may want to talk to her teacher and make sure she understands that your daughter may be feeling anxious and whatever else she might be going through. Hope that helps. Lynn

#4

Hi Christina,

How did your sons MRI turn out? I would be more then willing to discuss strategies and coping with you. Does your son have any accommodations in school? Any other triggers? My daughter’s ADEM after effects are most obvious after a virus (manic emotions, wetting herself, won’t eat for weeks, tired, confused etc) and we have concerns for her future especially in regards to school.

#5

Hi, would love to connect. My email is â– â– â– â– â– â– â– â– â– â– â– â– â– â– â– â– â– â– â– . I live in Denver, CO.

Thank you for reaching out! As one mom to another, this disease can be tiring emotionally and difficult for others to understand…

Christina

#6

Hi! My son was just recently diagnosed on February 28th so we are still very much dealing with his initial recovery. He is still tapering off of his steroid treatment which will end after next week, although after our most recent neuro appointment he may stay on longer. He will be 4 in June and right now can’t walk unassisted. We are in Cleveland, OH.

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#7

Hi Msulli -

Thanks for reaching out! I am so sorry to hear about your son, it is
incredibly difficult as a parent to watch your child go through that
experience. How is he doing now?

Christina

#8

Mentally and cognitively he seems to be improving but his more physical symptoms, walking, balance, etc continue to get worse. He has not walked unassisted since this all started about two months ago. As of today his neurologist has ordered another MRI and gone back up on his steroid dosage. :frowning:

#9

I know it’s terrifying. I am so sorry. Steroids worked wonders on my son,
hoping he same for yours. Are they doing MRI of brain and spine? In our
case they didn’t do spine and wished hey had later

Christina

#10

Yes they will do both brain and spine.

#11

Hi group!

My son who’s 6 was diagnosed February 2015 thank fully he’s regained all sight hearing and mobility however the processing part of his brain is injured and he doesn’t read or write at school. My little boy has behaviour issues and complete meltdowns three times on average a week. I refused steroid treatment as a neurologist told me it masks the bigger problem and we’ve done well with physio and hydro therapy. Everyday is a struggle with ADEM but we are all very lucky to have our children. Much love Kayleigh ( mum to Henri 6 and Elsie 5) x

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#12

I understand your struggle. hope things get better. I too had struggles with behavior issues with these melt down to type of seizure activity. I finally have been hopeful on some of my own homeopathic treatment. as other doctors just left it to “damage”. I do not recommend that anything I did is for others. I can only tell you, I got tired of waiting for an answer, and didn’t get one. thoughts and prayers to you and family

#13

Hi, My 18yo son has been recovering from his ADEM attack for a year now. He is very discouraged and depressed, somedays he will not get out of bed. He is a paraplegic with some regained strength in his legs. The PT is encouraged he will walk again but only if he is willing to work at it, which he does not due to depression. The incontinence is such an issue, also. Does anyone have experience with when that comes back?

#14

hi , may i know is it your son vision was affect by ADEM? cannot see but now fully recover?

#15

Hi! My baby was diagnosed ADEM on April 20 2017 ( 7mths 20days). She “lost” her vision, “lost” all the mobility , can’t even drink milk by her own…have to using rice tube when ADEM attack…BB was then given IVIG treatment for 2 days,and lots of steroids…

2 mths later, my baby seem like improving a lots, can eat can drink, all the limbs can move…but she have to do a lots of rehab to recover, because her left side body was imbalance…and only can see from close distance, her eyes can’t focus and always jerking ,sometimes the head was shaking out of her control…I wonder she can fully recover her vision or not in future…sad/.\

#16

Hi! My son didn’t have any actual damage to his eye/optic nerve. What they called it is Corical Visual Impairment (CVI) So he can see, but the way he sees is not quite right or consistent. The eye itself is okay, but the way it’s being processed is off.

#17

My son had a lot of trouble focusing in the beginning as well. He actually has “visual therapy” on top of his physical, occupational, and speech. I’m sorry you’re dealing with this with such a young one but I am glad to hear she has been making improvements!

#18

thansk for the info, now i understand what is CVI
My BB had certain area same condition as your child
hopefully my bb can recover.

#19

My son diagnosed with adem from virus toxoplasma in May 2017, we live in Indonesia. He gets a lot of white area in left brain and right brain. A doctor said he got a brain problem in spech and awareness. Today he is not responded with people, cant speak, weak in his neck. He has got high dose steroid and ivig. I need to talk with parents with kids who had ADEM. My email: â– â– â– â– â– â– â– â– â– â– â– â– â– â– â– â– 

[poster’s email information removed by Seenie from Modsupport for her protection. Please click on rgosal’s avatar (the purple circle with “R”) and then on “Message”. Share emails that way, please, for everyone’s privacy.]

#21

@trust_level_0 Message to all members of www.acutedisseminatedencephalomyelitis.org

Can any members with children who have had ADEM please contact member rgosal through the the community. She would greatly appreciate hearing from you.

rgosal’s story can be found here and here.

Many thanks.

Seenie from Moderator Support at Ben’s Friends