Lelose
Hello, I have just joined the MS forum here and was reading through all the replies to someone's post before coming across yours.Your story is amazing and part of if feels all to familiar as my husband was diagnosed with ADEM in 2012 at the age of 38.He was in critical care for 6 weeks, the rehab took a little over 2 months.What really captured my attention from your post was your diagnosis with MS.I won't lie, it's something wequietly worry about if husband will be diagnosed later on.He is dropping things all the time these days.It's frustrating for him, but I quietly sit and watch this happening on a daily basis where things quite literally jump out of his hand and I worry if it's the start of MS.If you don't mind telling more about your experience, after ADEM, did you suffer from chronic fatigue and "clumsiness"?Also, what were the symptoms you had leading up to your diagnosis of MS?Please ignore any part of my message that you find an invasion.With all due respect, my questions are a way for me to find some comfort in what we have grown to know as the unknown.Husbands ADEM all started with a bought of Tonsillitis.He suffers from chronic nerve tingling.Thanks in advance.x
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charlie11mum
Thank you, Deb, so very much for your story! It's what doctors at pediatric told me that after child changes into adulthood, they lose the track thus statistics about ADEM/MS can't be relayable here. But the lastest data are showing 50/50 chances to develop MS after the ADEM. Damn lottery!
I am PM you in hope to discuss it further, please.
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debgen
Hiand welcome to our community,
I am so sorry that this has happened to your young child. My radarimmediately went off when I saw ADEM. I came down with a severe case of ADEM at age 27...30 years ago.
Mine began with ON in the right eye. I woke up about 2 weeks later with my right hand completely numb. I went to my doctor who thought that I had just piled a nerve. The numbness got progressively worse and I was unable to change my baby's diaper.
Three days later, I was having a lot of trouble walking so my hubby took me to the ER. From the time I arrived there, I went down very quickly. I couldn't't even stand and I was slurring my speech. By the time a doctor came to see me I was losing conscienceless. I woke up in the hospital a week later completely paralyzed in all 4 limbs. I remained in the hospital for a month. A neurologist dx me with ADEM and transferred me to a local rehab facility.
I remained there as an in-patient for 4 months. I received PT, OT and speech therapy. I lost my ability to read but because I am a Special Ed. Teacher, I had many good friends in the field who helped me learn to track and read again. The most difficult part was being separated from my toddler son.
My speech fully recovered. I was left with permanent left sided weakness. I left the center able to walk again with only a limp! It truly felt like a miracle.
Luckily the only cognitive deficits were math related such as transposing numbers ad difficulty with time.
Within the next two years I gave birth to my second son and then went back to grad school to complete my masters. Within 5 years I was back to teaching Special Ed. which I did for the next 23 years.
During this time I always walked with a limp and continued to have left sided weakness.
Then about 5 years ago, things began to worsen. Waking was becoming much more difficult and I was tripping and falling at work. I went back to a neuro (first time in 25 years!) and after an MRI and spinal tap was dx with MS. I retired on disability. I began my first DMD- Copaxone.
Unfortunately due to a series of bad situations, the deaths of my brother and mom in eight months, I suffered 2 very severe and long relapses. During this time my mobility spiraled downward. I was using a rolling walker. I found a new neuro and switched from Copacone injections to Gilenya pills! It has been a lifesaver! I am now able to walk using just a cane. I have been going to PT weekly for 4 years.
I wanted to share this lengthy MS/ ADEM saga with you. Not many people share these so I hope this helps. Please message me if you want to discuss anything. My prayers are with you and your family.
(((Hugs)))
Deb
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Try discussing this with the other parents, there are some with kids much younger, and more severely impacted, so that they have a wealth of experiences, good and bad, on how they reacted and dealt with how much to hover over their children. But every child/parent team is unique, and it has to be a learning experience for all.
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charlie11mum
Exactly, PeninaD!
All these thoughts while you are just hanging around in limbo without any answers... It's tough.
I know that nobody on internet will give me the right answers , diagnosis and all that, but just to know that there are others, talk with thme, compare experiences, share ideas....
My shrink today announced officially that I'm as normal as they expect people to be, while I feel that I'm at my wit's end with all this.
Like with plenty of nasty falls and broken arms four times now - how you let your child go out unsupervised? How to supervise and still keep the life normal? And so on, and on and on.... Scary!
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PeninaD
It is very scary with a child, where you expect constant forward progress with skills and intelligence, and suddenly things go backwards, get stuck, and bizarre.You just want to DO SOMETHING! And want everyone else to jump.And while it seems it was relatively quick for us, still nothing feels fast or complete enough.To watch the child you had some much hopes form now to wonder if they will be able to sit through a degree, make it through a job interview and be able to even get into the work-force with enough energy and mental acuity to support themselves well, be able to navigate the medical mindfields even when you are gone, and will there be a life partner out there that will stick by her side and care for her as well as you want her to be cared for in these unusual circ*mstances?That is what every parent in that group deals with.
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charlie11mum
Thank you, PeninaD, joined!
WoW! For you it really went really fast then. We are in much slower process, but many bizzare symptoms you mentioned sounds so familiar.
We had bout in November which is right season for ADEM, but nothing else matched - 11 yo blonde girl, no signs of inflamation at all, optic neuritis in one eye, and just two very small leisions in the brain. MRi of ADEM patients usually look like splashed with porridge, while my girl has two small ones with sharp boundaries. She had no cortisone treatment as doctors explained that at her state there is no need for cortisone, as there are no signs of inflamation. ADEM without an inflamation? Doctors in barcelona released her without any diagnosis, even without ADEM, with verbal comment that they do not want to scare us but out of last two options left, ADEM or MS, they are sespecting MS but we must wait to meet criteria.
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PeninaD
I probably should have used the message feature to give you the FB info!But if there are other parents looking around here to find more parents to talk to, they should be able to also see that there is a meeting place somewhere on the internet.
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PeninaD
In our case, we believe that she already had MS for 3 years at least before she was hit with the Mono virus.When her symptoms got so bad (falling, walking into walls, not feeling her shoe fell off and walking all the way home that way still unknowing she only had one shoe on, dropping pens and pencils and not understanding why no words showed up on her paperwork, truly bizarre things), and the idea of ADEM was breached, everything was wrong about it in my mind.Wrong season, wrong gender, no fever at all, way too many lesions on the MRI (both with and without contrast showed lesions, so already it showed this was a longer process than the doctors thought), more than 5 O-bands on her lumbar puncture, so I kept insisting it was not ADEM but true MS, but as they were doing the same initial things for it that would have been done for an MS attack, such as IV steroids, I stayed mindfully watchful.
The steroids did significantly help quickly, and she made it to the first two weeks of school literally on her own two feet before things went downhill fast again, when we returned to the neurologist and had to put her in a wheelchair, no one doubted that this was not ADEM. More so when the new MRIs of brain, neck and upper back, only 5 weeks after the last brain set, showed NEW lesions in her brain, and a large one in her neck plus a few small ones in her upper back, she already met the new McDonald criteria of disseminated in time as well as space.Another round of IV steroids did absolutely nothing helpful, and a third complete set of MRIs was done less than 2 weeks after that at a research hospital, which showed even more lesions. So all in all, I think about 7 weeks to formally change the diagnosis from ADEM to MS...
The group on FB is Pediatric Multiple Sclerosis Alliancehttps://www.************/groups/PMSalliance/which is an arm of the www.pediatricms.org site.There are parents from around the world, but it seems to be strongly represented by US/UK/Canada, with some northern Europeans, and maybe an Egyptian and an Australian family or two.For now.
If you can't join on your own, please use the message feature here, send me your Facebook name or e-mail address, and I will arrange for you to get invited to join.
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charlie11mum
Oh, thank you, PeninaD so very much! Any info will help us. Even a chance to talk with parents in similar situation will help to calm my racing mind down. LOL
Numbers of Pediatric MS are growing, indeed, plus our 11 yo is 5'9 right now. It doesn't help also her being totally blonde with white skin (1-2) - another pointer according to the statistics, and living on the ;atitude between Oslo (Norway) and Edinburgh (Scotland) our chances of not having MS is not so big. (Damn statistics! LOL)
She had had neuropsychiatric (cognitive) testing as part of her hospital tests (as far as I understood, they use it as one of the tools to diagnose MS). They recommended to give her free hand until the next school year starts and not to concentrate on learning right now.. So we are on home schooling right now, doing things by ourselves when and how we can.
Finding the ways.... She has found her ways around math already, doing three digit numbers on fingers (with just few mistakes) and bravely refusing help from calculator so far.
I'm not so worried about her education as I'm sure, we'll be able to carry on homeschooling pretty well, if that's what will be the best solution for her. We are putting emphasis on problem solving and leaving memorisingtimes tables as unimportant behind (there is always some calculator available).
On days when she feels not capable for formal education, we concentrate on different art projects (she is rather talented plus art and music are believed to create new pathways in brain).
I can't see ADEM here, and that's my main problem right now. Waiting for MS to manifest stronger (IF it is MS, of course) until it can be diagnosed officially (the doctors had pointed quite strongly that they expect MS to be the case) makes me so impatient.
Is there anything which we must do? Is there any treatment that might reduce her cognitive impairrment? Interferon-beta-1a (Avonex) therapy is believed to slow down the progression of cognitive impairment.I know, days and months for MS is not crucial but still... Are we just loosing the time by just waiting?
I'm not crying at night into my pillow. I have no problems accepting the reality whatever it might be - ADEM or MS. What I have problems with is this "just wait and see". LOL Seriously, it's the hardest part.
That's why I asked here about your experience moving from ADEM to MS. How long it took? Have you had experienced the indications towards MS which ended up being ADEM?
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PeninaD
Can you get her physicians and/or her school order neuropsychiatric (cognitive) testing, in order to provide cognitive rehabilitation, as well as adaptive technology and educational services in school? I know here, in the short time we were diagnosed as ADEM I had to educate the school hierarchy, and tried to convince them to treat our daughter as an acquired brain injury in order to make educational accommodations such as a scribe, or study guides, extra time on tests, so many other things.The Us and Canada MS societies have publications regarding educational issues in MS, which would possibly guide you even if the diagnosis stays as ADEM.
http://www.nationalmssociety.org/What-is-MS/Who-Gets-MS/Pediatric-MS
http://www.nationalmssociety.org/Resources-Support/Resources-for-Specific-Populations/Pediatric-MS-Support-Network
I hope those links might give you ideas for getting educational assistance.The fear that this will lead to lifelong learning problems has to be overwhelming now.I can't say we still don't gave those fears.
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PeninaD
I wish I could concur that pediatric MS is rare, because from my perspective as a mom of one of these kids, I am hearing of more and more families with this diagnosis...the fact that we in North America can field MS teen camps in Rhode Island, Texas and in Canada yearly is already too many cases.
In any case, there is research on pediatric MS in Europe, I just wish that I could recall where...if I find it, I will post it.If you are on Facebook, there is a group for parents of pediatric MS kids, and you may find more experienced parents there. If so, message me, and I will get you an invite to that group.
Our case, suspected ADEM post Mononucleosis (I think that might be called Glandular Fever in Europe?)within 1.5 months was relapsed with so many new lesions and symptoms, the diagnosis was changed to RRMS.So we did not suffer indecision very long, comparatively, once the neurological basis of over three years of each symptom being seen as individual issues, not all part of one disease.Again, the big group of parents on the Facebook group has much more experiences than I do.
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charlie11mum
Thank you!
She had seen two sets of doctors in two good hospitals in Europe (we are not in US) One is the Barcelona center with 4th place by international rankings regarding MS so I believe she was lucky to get right to the top from the beginning.
Both sets of doctors said the same - to wait for a new bout or new leisions. Until then... nothing.
The foot drop might be not a new thing because she had left side hemipharesis and still has. Left leg is not fully back as well as left hand now.
Some days are worse, same better with tremors, tripping over, dropping things.... She might developed the drop foot as a result of the hemipharesis so that's not particulary a new thing.
If it's ADEM, it was a very mild case andI expected the majority of symptoms gone by now -but she recovered for the first 2 weeks rather quickly and since then she is where she is - no further improvements.
Regarding brain.... she is working hard to get back where she was before - right now she is half way through the year where she should be and I presume that at the end of schoolyear she will reach the point where she should be if not the bout.
She works really hard on days when she can - some days fatigue is hitting too hard to do the schoolwork.
The new things since bout I have had noticed are lost/mixed meanings of words and overall inability to express herselfproperly. The stories she tells are all muddled up. The first essay she wrote after the bout was much better than the current ones she manages to produce.
The other symptoms is tremor, especially in the left hand.Memoryis worse than before. Some days she complains that vision is blurred and colours fadded, but again - it never had lasted the required 24 hours, just 2-12 hours, so again - not enough.
It is all so frustrating.
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COMMUNITY LEADER
supermum_ms
Hi and welcome to our little MS community,
I'm really sorry for what has happened to your little girl and the lack of a definitive answer to what is causing her to experience all this!
MS in children is quite rare, though it definitely does happen, relapsing - remitting (RRMS) is the most common type and primary progressive (PPMS) is the least common and from what you've described she doesn't seem to be experiencing these sx's in the pattern of 'slowly progressing' and getting worse over many years, so if this is MS I really don't think it could be PPMS.
MS can be very difficult to dx even in adults, in children it would definitely be a lot harder and I would highly recommend you try to find an MS neurologist in your state who has the best reputation, preferably with experience in dx MS in children. I'm not sure how to go about that but your MS society should hopefully be able to give you some guidance on who to contact, or at least point you in the right direction.
The other thing i wanted to mention to you is "brain plasticity", and the need to get very focused on helping her recover the cognitive and physical issues she's having difficulty with right now, please focus on today and do not wait for a dx of ??? before starting physiotherapy, speech and cognitive therapy, make it happen!
Hugs.............JJ
ps if the foot drop is a sx she didn't have before, so something new since the original attack/event then its possible she's having the second attack the dr's are waiting for..........contact her neurologist if you haven't already.
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