Recurrent adem, being treated by rheumatology now

Hey all, I realize this support group is made up of mostly adults that's have had ADEM, but I'm here on account of my son. He's nine, and he's had adem seven times since 2008 when he was three. neurology is at a loss so they are enlisting the help of pediatric rheumatologist, which are wanting to put him on meds that MIGHT control symptoms...we won't know unless he never gets sick again, which lets be real, it's just a matter of time until he does. The thing is, these meds can cause cancer. I've not had a real in depth conversation about it with the doc but I feel like I don't want Dylan on these meds that can cause cancer which can take his life for a chance that he never get adem again. Would it even be worth it? The first med they tried him on was Imuran which caused vomiting so they discontinued that. Now he's just on 25 mg oral prednisone. I have read countless articles about cannabidiol and success with ms patients that have demyelination, which is present with adem as well. I've consider moving to a state with medical marijuana just to trial it. No side effects so I feel like it couldn't hurt. Any thoughts or questions for me?

What hospital does he go to? Have you taken him to any other neurologists? Are they sure it’s ADEM? I know of one mom whose daughter was not getting better, she took her daughter to one of the top pediatric neurologists in the country, and got a different diagnoses. Are they sure it’s not MS? I have also heard that the Paleo diet (which I know sounds awful for a kid) helps alot of MS patients. SAn Francisco pediatric hospital is where that one mom took her child, and they will accept insurance from out of state.

Hi! My heart goes out to you and your son. This must be terrifying. Question: is he remaining on high dose steroids long enough. I know I have read in the literature of rebound cases where oral steroid were used rather than in-hospital high dose treatment.

My understanding is that ADEM is a one time event and when it becomes recurrent it is actually a different disease. Have you gotten a second opinion? Have you consulted with the experts at John Hopkins or the Cleveland Clinic. My first neurologist was so arrogant that he refused to consider other possible diagnosis than his initial one that the MRI showed a grade 3 astrocytoma in my brainstem (thankfully incorrect or I would have been dead years ago). My second neurologist provided the correct diagnosis and a conference with an ADEM expert at John Hopkins for further treatments.

Long term steroid use at 25 mg has a lot of ugly side effects as well. I would be looking for something else too if I were his parent.

Please do not allow anecdotal remarks regarding cannabidiol to cause you to give it to your son. There is some serious research showing exposure creates long-term mental and emotional problems when consumed by children. I would want to see double blind studies showing the efficacy before giving a 9 year old anything.

Paleo diet info is interesting but a better focus based on one of the best research studies done is showing the more animal products consumed- primarily milk - in a culture the higher the rate of MS. (The China Study) My anecdote info is that when I eat a vegan diet I feel better 5 years post ADEM.

Deborah

He is treated by neurologists at the Blair e bastion children's hospital at the university of Mississippi medical center. He has been seen by all the pediatric neurologists there. Residents, I mean the whole shebang. As far as second opinions, I'd have to go outside of our hospital because all the pediatric neurologists in the state work on a team together. Dylan has had countless mri's and spinal taps...he has reoccurring adem and no other disease. He's been tested for mitochondrial disease all autoimmune diseases (which right now he's being considered autoimmune.) They've literally tested him for everything that could cause these lesions and nothing is showing up. He has a chem port and was receiving biweekly steroid transfusions as a preventative treatment and he got adem twice during that so that wasn't working. He last got sick in February so he is still on the oral steroids from that. But steroids only seen to work when he has lesions. They won't actually prevent him from getting sick. He always recovers well, returning to baseline. He has residual weakness in the right side of his body but it doesn't hinder him unless he is trying to open something. Oh and he's left handed now lol. I really just don't know what to do anymore. We went gluten free for six months and saw no improvements in behavior or neurological presentation. Thoughts?

My son was 17 when he got ADEM and will be 19 soon and still recovering. He has a long way to go yet. I pray everyday he does not get ADEM again and that he recovers 100%. I am also trying the vegan diet for him.I see an improvement with the vegan diet too. I noticed at a birthday party recently he had a few bites of cake and frosting and then one swallow of cow';s milk to "wash it down", and he was sick the rest of the day. Almond milk or coconut milk is better. Our doctor said that my son got ADEM because he had a weakened immune system and that ADEM is an autoimmune disease. My son was treated with steroids and IVIG. Has your son had IVIG? That could help him possibly not get ADEM again and start to get stronger.

I want to echo Mary's input. I am gluten free and dairy free. I have recurring inflammation along the damaged nerves when I consume either gluten or casein - the protein in milk. Oddly, Pecorino- a hard cheese made form sheep's milk does not cause the same reaction.

I use an Almond/Coconut milk blend.

Also has anyone checked his Vit D levels? I found low Vit D to be a trigger for recurrent inflammation. I do not show new or even flares on MRI, just the irritation and exacerbation along the already damaged nerve pathways. Is he actually showing new lesions or is he just experiencing renewed irritation in the same places.

I would be asking for a consult with the specialists at John Hopkins Childrens Center as they seem to be doing the cutting edge research in ADEM with children.

Best,

Deborah

PS: Autoimmune diseases occur when the immune system is OVER working not under working. A weak immune system is the opposite of what causes ADEM. If your doctor truly said that to you, get a new one.

Doctors have not told me any balogne about auto immune disease lol. I know exactly how this works and he's on the immunosuppressive drugs for that reason. How do I get in touch with johns Hopkins people? We are a family of limited means if you know what I mean. When he has mri and he's not sick he may show traces of old lesions that are healing or "scars"as they've called it before. When he's sick he'll have lesions bright white and once so bad there was evidence that he had some bleeding in a lesion. Trust me, we've been through this for six years. I've educated myself about it all so please don't think I'm dealing with a bunch of dumb docs unwilling too help because his team has stayed at the hospital researching for Dylan when they could have gone home to their families. The vitamin d link I've heard of and I have been thinking of supplementing him...I think I may go ahead and do that. Considering cutting out gluten and dairy..you guys are convincing. Lol. I like speaking with people that actually have been through what Dylan has been through instead of just read about it. I am truly so thankful for everyone's input. If I missed any questions I'll get back with it. I got to feed the boys lunch...by the way I have four boys! And Dylan is the oldest.

He has gotten some recurring lesions but almost every time he has new ones. And he's also gotten them on his spinal chord.



Dylansmom said:

He has gotten some recurring lesions but almost every time he has new ones. And he's also gotten them on his spinal chord.

Dylansmom -

I echo the group, I would get a second opinion. If that means out of state then so be it. I worry that at hospitals there is a group think where the doctors all read from the same playbook. I think it would be good to get an outside opinion. Msot of what I have read suggests that ADEM is most commonly "one and done," and not recurring so I would be nervous about some of the recommendations you've been receiving. Good luck and thanks for posting to the community.

Best,

Ken

Yes I'm beginning to feel like I may need to do that. I just don't know where to even start. I could take him to the children's hospital in New Orleans, which is a two hour drive (same as the drive to UMMC) but other than that I just wouldn't know where to even begin.

Maybe ask your doctor for a recommendation on how to get a second opinion. On one hand it may seem like you're saying "I don't trust you" but doctors are used to offering second opinions so I would ask your Dr how to move forward. Your son has been through a lot, and if the best recommendation at this point is to put him on drugs you are concerned about then advocating for your son and getting a second opinion seems like a reasonable request of your doctors.

Yes Ken but I am terrified from reading all of these stories in the news where hospitals have done awful things like call cps for parents going against their recommendations...I'm afraid to tell the rheumatologist that I don't want him under her care. The only reason she's on his treatment team is because they wanted to investigate other diseases where the body fights itself so they turned to her. She suspected vasculitis but all testing came back negative. She wanted to do a brain biopsy but the neurosurgeon was against it. So if I say no drugs then she's off the team. But she supports my concern about the meds but unfortunately she can't give me any answers

Hi again! To contact John Hopkins, just type in John Hopkins Childrens Center in a google search. It should take you to their website. Look up the transverse myletis center and call them. When doctors collectively decide something they may not look for the real answer. I had an experience with my then 16 year old son where a doctor decided he was a meth addict coming down from a long high. I have a child who did drugs. He did not. Ever. Not even a drink of beer still at 33. Thankfully I refused to accept that decision and pushed the doctors to look for the real answer-mycoplasma encephalitis as a complication of influenza. He would have died of notfor correct treatment.

Deborah, I am glad to hear that about being vegan. I have a paleo fanatic friend who keeps trying to tell me all autoimmune disease is caused by grains and beans and wheat, etc… and that I should make my 5 year old daughter who had ADEM paleo. There is some famous doctor that has MS and was in a wheelchair, then went paleo, and now is active and rides her bike every day. So I went on the MS forums, and sure enough there is a lot of people with MS who have significant improvement with paleo. However, being mostly vegetarian for most of my life, this would be an extreme change for us, and depriving a 5 year old of basically everything doesn't really seem like a happy balanced life to me.



SweetKnits said:

Hi! My heart goes out to you and your son. This must be terrifying. Question: is he remaining on high dose steroids long enough. I know I have read in the literature of rebound cases where oral steroid were used rather than in-hospital high dose treatment.

My understanding is that ADEM is a one time event and when it becomes recurrent it is actually a different disease. Have you gotten a second opinion? Have you consulted with the experts at John Hopkins or the Cleveland Clinic. My first neurologist was so arrogant that he refused to consider other possible diagnosis than his initial one that the MRI showed a grade 3 astrocytoma in my brainstem (thankfully incorrect or I would have been dead years ago). My second neurologist provided the correct diagnosis and a conference with an ADEM expert at John Hopkins for further treatments.

Long term steroid use at 25 mg has a lot of ugly side effects as well. I would be looking for something else too if I were his parent.

Please do not allow anecdotal remarks regarding cannabidiol to cause you to give it to your son. There is some serious research showing exposure creates long-term mental and emotional problems when consumed by children. I would want to see double blind studies showing the efficacy before giving a 9 year old anything.

Paleo diet info is interesting but a better focus based on one of the best research studies done is showing the more animal products consumed- primarily milk - in a culture the higher the rate of MS. (The China Study) My anecdote info is that when I eat a vegan diet I feel better 5 years post ADEM.

Deborah

I wonder if you could email cleveland clinic, Johns Hopkins, etc…. or send letters presenting your case. You never know, they may take your case without a referral for research purposes. I would just google top pediatric neurologists at those facilities, and email them or their office directly explaining your case and asking if they can help. I can't imagine what you must be going through, as one time was the worst nightmare ever. I am so glad to hear that he recovers so well, and that this hasn't resulted in too much loss of function. As for the Vitamin D, my pediatrician told me I should be giving my 5 year old 1000-2000 IU's daily (we live in the cloudy NW) and lots of fish oil! helps with inflammation. Keep us posted, I trust your doctors know what they are doing but it always helps to get a fresh perspective.

I have seen a lot of the same anecdotal info re MS and paleo. The problem with those stories is the very nature of MS itself since it has remitting/relapseing patterns. Long term studies show the opposite - leaky gut allowing casein and other animal proteins to enter the blood stream, triggering the creation of antibodies which then mistake the very similar proteins in mylen leading to MS and a host of other probl

Problems. Check your daughter’s vitD levels. Vit D requires fat in the body to synthesize from sunlight. Vegan children need lots of nuts, avocados, etc.

My son had ADEM in 2004, followed by repeated attacks of what may have been ADEM but we are not sure. His neurologist calls it a disease of the white matter of the brain, primarily optic neuritis. Since 2011 by son has been treated by Adam Reinhardt MD, a rheumatologist at Children's Specialty Clinic in Omaha, using pretty low doses of methotrexate and mycophenolate (Cellcept), with few side effects. My son was on prednisone for most of that time but he has now tapered off. He is almost 16 years old and has been symptom-free for two and a half years. In my opinion, the risk of these immunosuppressants is outweighed by the benefits.