Acute Disseminated Encephalomyelitis (ADEM) Support Group

Recovery Update


#1

Hey gang,

It’s been awhile, and I thought I’d jump on and see how everyone is doing?

I’m doing better I think. My disability hearing came and went, and 3 months later (although I’ve been approved), I still have no funds, and the Social Security website says it’ll be end of December before I start getting any. That will be one month shy of 4 years of my ADEM attack. Talk about moving at the speed of molasses in winter!

I watched a show by Dr. Daniel Amen who has a new book coming out called “The Brain Warrior’s Way: Ignite Your Energy and Focus, Attack Illness and Aging, Transform Pain into Purpose.” I’ve found his first few books at the library, and I’m on the waiting list for the new one once it’s released this week. Of course it talks about diet, attitude and exercise as crucial to brain health - no surprise there - but I thought it worth a look-see.

I’m also stopping my pelvic floor support physical therapy (which is to help with difficulty urinating and - sorry to be blunt - sexual dysfunction), and I’m going to start Pilates in a week or so. I feel so weak, and both my physical therapists (still going to one for neck and shoulder spasms) tell me that strengthening the “core” is important. So… I’ll keep you posted. The Pilates place I found is run by to Registered Nurses, so that’s a plus.

Still taking supplements: Biotin, ALA (alpha Lipoic Acid), Vitamins D and B-complex and Omega 3s. I think they help. But here in the midwest we’re leading into winter, so my mood is droopy because of the shortened sun/days already.

I have to say I’m feeling very disappointed in general. My husband was supposed to be retiring this year, but now he cannot because of my health and our finances. The disability funds from Social Security are pitifully low considering my former salary, and all I can think is that I must get better just so we can afford to live!

Okay - I’ve rambled enough. Anyone else want to jump in?

Blessings and healing to everyone!

LauraK


#2

Hi LauraK thanks for the update. Thanks for the information on Dr. Daniel Amen. I will check it out.I have been feeling sorry for myself. My son’s recovery is really slow. The only way I seem to cope these days is to read and research as much as I can .Not sure if I am imagining it but this month it seems like we have retrogressed a bit. My son become very agitated and the neurologist increased his depression medication. I am not sure if it is the meds or ADEM but he has lost interest in communicating with his friends, he is extremely tired and generally not really present and not interested in anything. He is on two antidepressants and Adderall. When he is not on adderall mostly Saturdays he sleeps all the time and is not interested in learning anything. He is still at a outpatient Cognitive rehab center. He is still struggling to read and sometimes I fear after having read so much about recovery that maybe this is it and I have to accept him as he is now. He was diagnosed April 2015. It is 19 months since his diagnoses there has been improvements along the way but is seems like we have reached a plateau. I try and stay positive when he is around telling him he is getting better all the time and he has a personal trainer too so he exercises regularly as well. Is this how recovery goes or am I just being too impatient. I miss my son so much, it is him and not him at the same time.


#3

Hi Laura

Thank you for your update. Just a quick thought and you may already have considered this but I understand you can purchase special lights to treat seasonal affective disorder (SAD). They are basically just little light boxes and you sit in front of them for a little while every day. They are fairly inexpensive. I know of a couple of people who suffer terribly during the winter months here in the UK and have said these have helped. Here is a link for you. Worth a try!!
All the best.
Melissa.
http://www.sad.org.uk/buying-a-sad-light/


#4

Hi Sarah,

I would just say try to stay encouraged. I’ve read a few books now that say the brain CAN recover. And every neurologist I’ve seen (and that’s quite a few in different states - we moved) have said they just don’t know with ADEM. I know I’m still recovering (just at 4 years) but I’m pushing hard.

May I suggest a few things: get a lamp with a DAYLIGHT TEMPERATURE LED light bulb available at LOWES and probably other places. No need for a special lamp, they’re standard size. I find that this time of year, the lack of sunlight really affects me - and that was before ADEM. It’s called Seasonal Affective Disorder, and maybe your sun is feeling it more now post-ADEM. People who suffer from SADD (I think there’s another D), often feel the need to hibernate in winter months - pulling away from people, eating more, etc. That’s why I offer that info. If you have any way to take him out into the sunshine during the day, even to sit, it might be helpful. Also I understand Vitamin D (which is available as gummies now) helps with that. I take that.

Also, I suggest signing up for LUMOSITY online. It’s a brain game thing, and they have really fun (and some tedious) games to help bolster parts of the brain. There’s a race car, matching games, Camera-shooting birds, etc. It’s not too expensive for what it did for me. Try it for a month - see if he can find something on there to do. Might help with the cognitive recovery.

Does he have a favorite book/story/tv show? Try to find something that formerly interested him and talk with him about it. He may not be responsive, but anything that gets his brain working - whether you see it or not - is good.

And then - this is me - try to find a natural way to bolster him. I’m doing supplements, seeing an acupuncturist, and (for women’s things) going to go see a compound pharmacist. (My recovery seems to be happening at the same time as menopause - oh yippee.) A homeopath, or chinese herbalist or a nutritionist may be able to give some direction. I have not yet read Dr. Amen’s books but the show on PBS talked about different supplements for different brains. So that’s why I’m looking.

I am on Ritalin and Valium. Those are my big meds. I also have a lineup of headache meds for the regular Clusters I get. And I only get about 3-4 hours a day of “productivity” - you know, getting up, getting dressed, etc. - and that’s thanks to the Ritalin. So I understand.

Don’t give up. I do believe the brain can recover, and I understand with littler folks their brains are still developing.

I read the book (although there is a TEDtalk about it) called My Stroke Of Insight. Highly worth the read. Very encouraging.

And the usual, avoid sugars, deep-fried foods, eat healthy whole (which I struggle with daily!)

Good luck - write back whenever. And I apologize for the lengthy response. THe Ritalin has obviously just kicked in. LOL

LauraK


#5

Hi Melissa,

That’s hysterical - I just wrote that to Sarah. Yes I do have SAD and I have daylight lights in every room in the house. Plus when it’s nice enough, I go sit in the sun.

Thanks for backing me up on that! :smiley:

LauraK


#6

**Hi everybody, I haven’t been here for a while. my son is 11 now bus it was last October 2015 when a brain biopsy confirmed he had ADEM. symptoms were body shaking, like seizure episodes, (not shown on EEG’S) we are told mass shrunk and is like a cyst and so he is considered “cured”. his personality is changed. I am called to school almost everyday because he has these like episodes are constant. I think he also has PTSD as he relives the hospital and gets scared and see’s needles and doctors and blood. Neurologist say its phycological. so we see a psychairtist. they don’t know how to treat him either. hospital that missed finding the mass after 4 or 5 ER’S want money. no lawyer will help.


#7

I am so very sorry for all you’ve gone through. It is truly amazing to me the lack of any kind of support is available for the various things we’re going through. I would find a counselor (that’s what I went to) to discuss coping tools rather than “something wrong” that needs to be fixed. Our lives have been changed, and the “new normal” is a daily adventure/struggle.

I might get a second opinion from another neurologist. My first neurologist told me I was completely cured after 3 months. (He was very wrong.) And after we moved, the first one I found here told me I did not have ADEM but sleep apnea! So there are, shall we say, different opinions of what’s wrong and treatments available.

I have a friend who has seizures, and that is a challenge - never knowing when they’ll hit, and the PTSD aspect is really hard. Do you have a dog or cat? I have a dog that’s ended up being my emotional support dog (he comes over to me when I’m crying or a headache is coming on), and my friend with seizures has a cat that comforts her before and after. Just a thought.

I wish you well - but consider a second opinion. Check out the myelitis.org website for resources and medical personal.

Good luck, LauraK


#8

thanks for your reply Laura, this is just beyond belief. episodes look exactly like a grand mall seizure. who says this??? EVERYONE. school nurses. local hospitals. but neurologist says not on EEG… see psychiatrist. ok so I did that. they saw his “episodes” they don’t believe this is a psychological problem. the PTSD is real but they feel it is exasperated from this possible damage with his brain. ok so I found another neurologist. that I made appointment with, have no clue if this doctor is better or not, don’t know if this doctor knows anything about ADEM. but its a good hospital and I think a good doctor isn’t one who knows everything. a good doctor would reach out to possibly another doctor to seek information on how to better treat my son. I agree with you that I might be looking for a fix. I am also learning, from what I can see…this is not going away anytime soon. and yes we have 2 cats. one of the cats…sits right on his chest after his attack. leaving again to go pick him up from school now as his attacks are lasting too long. new appointment set for January. will write back more later…thanks.


#9

Thank you so much for all your advice Laura it is very comforting to me always. Thanks to kittyfoofoo as well. I will try the light. We have not been supplementing with multi vitamins just vitamin D and Biotin as recommended by our neurologist. He eats fruits and vegetables daily but may not get all the nutrition he needs therefore we are starting the vitamins tomorrow. I am going to try and stay as positive as I can for him. We see the neurologist next week and get the results of the Cognitive Test that was required by the university hospital a few weeks ago. I will update everyone on the results. He really struggles to read and write. But I think my issue is plenty of patience and not to compare him to who he was and just accept him as he is now, live in the moment and appreciate every slight improvement. Hopefully we can also reduce some meds or the dosage after a discussion with the neurologist. Our family lives far away so he has not seen the family for at least 10 years. We plan to visit them during the vacation and the cognitive rehab center thinks it would be a great idea and it may help with his recovery. I am so grateful for everyone on this site. Thank you so much for everyone’s advice and input.


#10

Hi again, Momof4,

I had a thought last night about your son’s seizures. My former roommate has epilepsy and her seizures could often be triggered by different kinds of lights, like fluorescents, CFLs, etc. With my “new brain,” I also am affected by those. One day we were in a store (warehouse) that had a terribly flickering light, and within 2 minutes I was completely wiped out for 2 days. I know that’s not a seizure, but that is MY body’s reaction to new stressors.

So maybe there is some kind of light at school that is causing it.

And also, stress in general, the fear of an episode can probably bring on an episode. For 2 years after, everytime I got a headache I panicked, because the headache was the first major sign (I noticed) that started my journey.

Also, I know I said this before, but doctors do not know everything. And one “neurologist” here told me I didn’t have ADEM but Sleep Apnea. The MRIs clearly show ADEM at the time, however he KNEW that adults didn’t get it. So please take heart and keep looking for a doctor that will work with you.

Where are you located? I was in Nevada for the first 3 years of this, and one of the doctors was knowledgeable but passive. We moved to Kansas City and my new (post-sleep-apnea-quack) neurologist is NOT knowledgeable about ADEM but willing to try anything and everything! And in 1 1/2 years, I’m already making strides! He’s sent me to acupuncture, 5 different therapists (occupational, cognitive, speech, and 2 different physical therapists), and also to a uro-gynecologist (which probably your son would not need…)

Just keep pushing. I’m glad he has you for an advocate. I had to be my own which is why I’m probably so loud on this site. I want everyone to reach out to find help.

Feel free to email me to chat privately if you’d like. Also, I can ask my friend with epilepsy if you two could connect. She might give some insight into what’s going on. I know for her, although not formerly called PTSD, until someone finally said YES, YOU’RE HAVING SEIZURES, she was very panicky.

Laura


#11

Probably helpful if you have my email address: ■■■■■■■■■■■■■■■


#12

thank you Laura for your information. I will write more when I email you but I feel I cant move forward and get my son help till I can get doctor on board that the A.D.E.M. and his (non-EEG) sezures are related. Opsoclonus Myoclonus Syndrome was listed as something that is associated with A.D.E.M… the rapid eye blinking and his mouth moving. then the shock like through his whole body. he is in and out of it all day and then he will be fine another day. then its his yowling because he see’s doctors with blood and needles…this is a nightmare. sometimes coaxing and rubbing his back or distracting him to perform a task will bring him around. if not, my “go to drug” is Benadryl. whether this is psychological or neurological I am ok with whatever but psychiatrist I think has tried and I think she also believes this is neurological. ok so yes I Laura I did hear about the lighting issue. I don’t think school will change their lights but I think I will take note when his episodes happen and the lighting. I was going to see an epileptic specialist but my insurance company called (a case manager they gave me) she called with a neurologist who specializes in A.D.E.M. so going to cancel appointment with other neurologist and see this new one. I got soonest apt was for February. then I JUST GOT A CALL TODAY. DOCTOR WANTS TO SEE HIM RIGHT AWAY. so next Tuesday I am off to NYC.


#13

Sorry just saw the part about NYC. I’ll be praying!

Laura


#14

When I get overwhelmed with light or sound it is now classified as “seizure” since anti-seizure medicine’s helped it. YMMV.


#15

I am getting a taste of what you are going through! I was going to applyfor disability until I found out what it would do to us. My wife is disabled and is on shots that cost about $4500 a month. My disability check would cost me dearly as it would push us out of our present health care and would thus cost us $50,000 more a year to keep her getting her shots. That would be $35,000 more a year then my disibility income. So I canceled my disability application and retired early as I can no longer trust my health to do the farm work necessary to make a liveing. They also told me that if I were to do anything for more then 20 hours a week I would lose my disability! That includes mowing the lawn, gardening, or even doing some charity work. They said it doesn’t matter if I get paid or not. :frowning: The only thing that helps me with thes weird pains is to keep busy doing something. So disibility was out. We now have to live on less then 1300 a month, but I can make up to $44 a month more and still keep our medicals paid for. AND I can still putts on the farm as long as I don’t make any money at it. So, I feel your frustration! I too have been extreemly depressed about all this.
But the cold weather has actually helped me to some degree.


#16

I thought I would post a little update on my granddaugher. She is now 4 and her 1 yr. anniversary is coming up 12/22. She was severely affected but has been making good progress. She went to her appt. for MRI last week. The neurologist said that there is some scarring but no lesions are evident now. We were very happy to hear that. She can now see and walk. Her speech is improving. Her behavioral issues are pretty significant, but hoping that she will make new brain pathways to overcome this. The last year has been both a nightmare and a marvel. When I think back to that night, we were told she may not make it. Now she doesn’t need her wheelchair and can see enough to read her books. Prayers for all and during this season, I pray for miracles and joy.


#17

_I know I haven’t been here in a while. and there is good reason, while our NY Neurologist feels the lesion is a done deal. it has shrunk and there for A.D.E.M. is cured… while my son who is now 12 he was diagnosed with A.D.E.M. back in November 2015 we have struggled with a daily consistence battle of like seizure’s, convultion’s rapid eye blinking and face movements you have to see it to believe it. sometime lasting an hour. School says he doesn’t belong there. ok so all believed I should get a second opinion. went to a even better hospital in NYC. ok got results yesterday from new MRI and new LP including new blood tests. her findings are that all is normal. she sending me back to psychiatrist. so 3 neurologists don’t want to help him and say he is fine. psychiatrist says she cant do anything. so in other words. September 8th 2015, he starts seizures and other symptoms, they find lesion. they shrink lesion but now he is just crazy and doing this on his own. does anyone have any idea what I am to say to people??? I have 4 kids and this is my youngest and now I have to tell people he is fine…oh and when he is like going off on the floor with foam coming out of his mouth…just ignore him…he is normal and psycho great. I hope all of you find answers for your A.D.E.M. and I hope your struggles get healed. as others have told me, please keep fighting. I believe my fight is over and this is our life…I hope that is not the case for you.


#18

Momof4,

Not sure if this would help. Dr. Greenberg seems to be the ADEM expert. Maybe contacting him would be of help.

Keep us updated.
Lynn


#19

Hi tess
How is your granddaughter now ? Does she behave normally ? My husband is also coping with the similar issues. After 4 months he has made good physical recovery but he has many cognitive behavioral issues to deal with.

I hope your granddaughter is fully recovered by now.

Thanks


#20

Nidhij, thank you for asking. Natasha had a relapse 1/19/18 She was in the hospital 4 and half months. She cannot talk and cannot walk. The relapse was after she got the flu. The dr. said its rare to get a relapse and doesn’t expect anymore. Small consolation. I don’t know how much she will get back. This time she had lesions on the brain and the spine. She will go for another MRI next month so we should see if any have resolved or any still there. For anyone reading this, the one different thing that was done this time is after 4 months we had an anti-mog test. Evidently this is a protein,if present, could indicate a predilection toward relapses. Hers was negative, but if its positive they can do further testing for titers. If you look it up, it explains it MUCH better than I. We are praying everyday for Natasha. She is wheelchair bound now but I am ever hopeful her abilities will return. Praying for all with this wretched malady.