Acute Disseminated Encephalomyelitis (ADEM) Support Group

Medicines


#1

Hi gang,

Well today I’m off Ritalin and starting Adderol at my neurologist’s suggestion. I’m always nervous trying new meds even though this one is very similar to the other.

He also wants me to try Nuedexta to help with the constant emotional outbursts (pseudo-bulbar affect PBA), but insurance isn’t covering it yet.

Other than vitamins, supplements and Valium, that’s what I’m taking. How about you? Anyone have success with other meds?

LauraK


#2

Good luck Laura, let us know how it goes :slight_smile:


#3

Thanks - it’s weird but okay so far. My body feels like it’s humming. Truly odd.


#4

Hi Laura my son was also switched to Adderol . He is still at rehab and still cannot read or write much. Although we do see very slight improvements in his understanding, thinking skills and memory. We are not sure if it is the effects of the adderol or the other drugs but he tends to wake up around 4am during week days and sometimes struggles to fall asleep at night. We try not to give it to him on weekends and have noticed that he sleeps better without the adderol but is less alert. He was also very emotional last week after a very long time. He is on two anti depressants Zyprexa and Wellbutrin but has gained about 50lbs since on the Zyprexa one of the side effects is weight gain.


#5

My son has had NO MEDICATION and cannot read or write it appears to be an effect of ADEM x


#6

My little boy has severe anxiety over the smallest of things this usually starts before bed! It causes a complete meltdown my neurologist prescribed melatonin as a calmer however he was falling asleep in his feet the day after. 2 years on now and these things don’t go away x


#7

It took me awhile to get back to being able to read (especially numbers) and retain anything. And I have a doctorate! So, have faith that your son will improve. That’s the only thing keeping me going.

Also, You might talk to your doctor about adding vitamin supplements. I take Vitamin D, B-complex, Alpha Lipoic Acid and Vitamin E/Omega 3s. I did some research and those seem to help the brain, so, why not? Problem is, my doctors don’t do “nutrition” so any dosages you would probably need to find on the web - but talk to your doctor first obviously.

It’s taken 4 years, but I can now read and retain some information from day to day. I was an avid reader before, and not being able to read drove me crazy. Also, sitting on my butt unable to do anything because i was too tired…

I do take Valium (very low dose) almost daily to take the edge of things, but I try to keep it to minimum. I also have melt downs, and sadly they are unpredictable - and massive. Practically on the floor pounding my fists. Which is not a good look for a 51 year old woman.

It also took me about a year to feel steady on my feet. I couldn’t walk when I went into the hospital, but was able to shuffle a bit with a walker. Then a cane. Then bannisters/rails/walls. I still have trouble sometimes, but we’ve made allowances in our house for those times.

It’s really tough to watch this (I imagine) and it’s tough to be on the inside trying to get out. I still feel this way, and most people that meet me think I’m “normal.” Well, it’s my new normal. And if you meet me, it’s probably a good day, and I’m out doing something.

I also pushed my neurologist into various therapies: cognitive, occupational (for hand coordination), various physical therapies (starting a new one in a week) and alternative treatments. I do acupuncture and chiropractic weekly for pain and spasms in the damaged and affected areas.

Sorry so long-winded - trying to address everyone all at once. Oh, and the Adderol seems to be okay. No buzzing today, and my focus-ability has remained longer (although I’m pretty tired now).

I was just told to do the Melatonin before bed, so I’ll be trying it. (I got it, but keep forgetting to take it. There’s a lot of forgetfulness in my life now.)

Keep the faith and best of luck to everyone. And push. Ask questions. The doctors DON’T KNOW EVERYTHING. Heck some don’t know anything (just ask the quack that told me I didn’t have ADEM, I had Sleep Apnea!)

LauraK


#8

I’m a grown-up, and it took awhile to figure out why I became anxious over things. I get anxious because of fluorescent lights! I get anxious because of strobing light (even the sun through the trees). When it’s raining and my husband is driving, the rain can make me anxious - it’s like my brain is trying to see and process every single raindrop!

And most nights I’m the last one up. I watch my husband and two dogs sleeping peacefully, and some nights I’m up until 2. No reason to be anxious, I just am.

Just a thought: see if you can find something that he likes to do and can do right before bed - you’ve probably tried that. I’ve discovered I cannot be reading on my phone for 2 hours before bed - it causes me to stay awake a long time, so now I try to read a book.

Best of luck. I know this is frustrating. Do check out The Transverse Myelitis website to see if there’s any info. Since I have adult-onset ADEM, I don’t have much advice for kids going through it. But I (with my PHD in Communication) have trouble communicating most of the time, so I imagine for littler folks, it’s terribly frustrating.

And for at least a year after my attack, I was anxious everytime I went to bed and every time I got a headache afraid it was coming back.

LauraK


#9

LauraK you rock. Everything that you shared is spot on. I wish that I had all that written down on my discharge chart. I got a lot of value from joining the Traumatic Brain Injury forum, too. ADEM results in a TBI for most of us so you get a lot more input/ideas/community there in addition to ADEM. Everything you share sounds like everything that ever shared over there. Have a great one.


#10

Is the TBI forum on here or another site? I’d like to check it out. My neurologist is having to fight insurance that I have a TBI. I suggested he explain it as an INTERNAL TBI versus an external (such as from football). That seemed to work.

Now I’m onto (or back onto) homeopathy. I’m tired of all the drugs with massive side effects. I did homeopathy years ago (fantastic doctor in Virginia) and it made a world of difference with some other issues. I’m very hopeful, although it’s slow going and will require patience. Which I’m LOOOONG out of…

LauraK


#11

So after about a week on the Adderol, I realized it was too high a dose. I wasn’t sleeping at night and was buzzing during the day. I asked for a lower dose (from 20 to 15mg) and it’s significantly different. I seem to have “energy” (able to move about), but I’m still incredibly tired and unfocused.

I figure I’ll give it a month (who knows, maybe I’ll have some weight loss…?) and then consider going back to the Ritalin. I only had a few hours each day on the extended release Ritalin, but there was focus sometimes. I really miss that.

Also, doing the Melatonin (5mg) about 9pm seems to help me get to sleep around 11pm.

Here’s hoping.

LauraK


#12

Is the TBI forum on here or another site?

For me it filled in all of the blanks about everything beyond ADEM.

My neurologist is having to fight insurance that I have a TBI.

Fight fight fight keep fighting.

Absolutely should not be a battle. White matter was destroyed, right? That is a brain injury. If you are born with it then it is an Acquired Brain Injury. If you got it from blunt trauma then it is a Traumatic Brain Injury. So what do we have? Well, the experts like to sit around pontificating about how we don’t have TBIs but we don’t have ABIs either. Don’t waste your time googling this because it is an absolute waste of time.

I suggested he explain it as an INTERNAL TBI versus an external (such as from football). That seemed to work.

Cool!

Now I’m onto (or back onto) homeopathy.

Definitely. Use every single thing that helps.


#13

Thanks for your advice Laura. My son also struggles to sleep and gets up around 3 to 4 am in the morning. He does better with sleeping when I give him a massage and do a healing meditation session. We noticed too that the adderol affects his sleep patterns. We try not to give him adderol on weekends and noticed that he sleeps better and even manages to nap during the day. When on adderoll he does cannot sit still and constantly moves around. We have also started him on melatonin to help with his sleeping.


#14

Hi Sarah,

I’m not a medical doctor - I can only speak from my experience. I am going OFF Adderol and back onto Ritalin. The Adderol did give me more energy but at the cost of sleep and subsequent focus, really negating any plus sides. The Ritalin only gives me a few hours of energy and clarity, but I did get good sleep, and I know sleep is important for brain function, and I would assume brain healing.

I would talk to your doctor about options. Ritalin is working for me. My friend’s daughter (non-ADEM, she has ADHD) benefits from Adderol - it helps her function better in school. So I know medicinal effects vary person to person. I just didn’t like the not-sleeping. Especially since I seem to already be tired all the time!

Best of luck and keep us posted.

LauraK


#15

@LauraK, the TBI site that occipital told you about is part of the bensfriends.org network. Like this one, it is non-profit, and run by the same volunteers that take responsibility for this one.

Join us there! By the way, this is a network of thirty-some sites. Spread the word!

Seenie from Moderator support.


#16

Dear all

I am worried mom, have a son 3y7m, at 18/05/2017 he was diagnosed ADEM. We stay in Indonesia, Bandung. He has medixson about 5 days in hospital and now he stay at home and just get a medicine (depacane 6ml per day and 3mg clobazam per day). My worried that his condition is going worse everyday, now he just stay in bed, paralyzed from neck to spinal, stiff jaw, can’t speak, and have involuntary movement all day except during sleep. A good news just his seizure is reducing. In Indonesia, ADEM is a rare disease. Whether our treatment is correct or not? Is there any suggestion for my child’s condition to improve (reduce involuntary movement and cure again)


#17

rgosal,

I am sorry you are having to deal with ADEM. ADEM is considered a rare disease everywhere. I am an adult and I was treated with 4 1/2 days of IV cortisone, which most people I believe start with. Keep this in mind…we all have different symptoms depending on where the ADEM starts. Also, we can and do get better, usually with some kind of residuals. ADEM’s healing is very slow with small improvements. Celebrate each and every little improvement, such as his seizures are improving. Take one day at a time, compared today to yesterday or last week or the day he first got sick. There are a lot of parents on the site who are willing to talk to you. Here are some links that might help you.

https://my.clevelandclinic.org/health/articles/acute-disseminated-encephalomyelitis

Try and control his and your stress levels, as stress is NOT your friend! If you have questions or simply want to vent, please feel free. We’re here to try and help. One last thing, take care of yourself…your son needs you! Take care, Lynn