Acute Disseminated Encephalomyelitis (ADEM) Support Group

Medical marijuana


#1

My husband has been recovering from ADEM which occurred November 2015. His was quite severe with him being in a coma for a couple of months. When he woke he was unable to talk or move in any productive way. He is now really starting to recover. He is talking a little and learning to dress himself. He is working on bearing his own weight and we are hopeful he will walk again and if not fully recover at least recover I enough to have a functional life. His doctors and therapists had written him off but I persisted and Fought for every bit of therapy he has gotten. He goes to a rehab facility but doesn’t improve on their scale which is impossible to do with his diagnosis it seems. He improves so slowly. Recently he was allowed more of all three therapy disiplines and his team is amazing and robert is healed to the point that he IS improving on the scale now. He has a lot of anxiety, loss of appetite (he has lost 80 lbs and is 6’5" and 150 lbs) a lot of tone still and considerable pain. We live in Colorado and one idea that his doctor and I decided to try is marijuana. He eats edibles and I rub CBD oils on the areas where the tone has done damage. For instance, he was not able to bend at the waist and now within a couple of days he is bending. His mood has improved, he is speaking more. I have not seen an increase in appetite but I think it takes a bit to build up in his system. I for myself am a big advocate of marijuana anyway so I was really excited that his doctor actually brought it up. I don’t know if there are negatives to this therapy we are trying but my experience with it has been positive. I don’t think it necessarily helps ADEM I think it’s better than all of the pills he takes and would rather go that route for relief of some symptoms. When he is not in such pain or discomfort he participates in therapy more and he laughs again.
Again, I did discuss this with Robert’s doctor as I do with anything we try and in Colorado it is legal.


#2

Thank you for sharing.

More laughter is a happy, happy thing. It is needed now more than ever!


#3

I am happy you found something that seems to be working. My granddaughter who is now 5 got adem 3 days before Christmas 2015, She was blind, unable to stand, no speech for awhile. She was in the hosp. for 9 1/2 weeks. Now she is walking and vision has returned enough for her to see but there is a deficit. Difficult to determine how much since her speech is still very compromised. Her filter knowing right from wrong and focusing is gone. She is not completely stable on her feet, but enough to be amulatory. I hope your husband continues with his progress. If his mood is lifted and he is making progress its bound to give him encouragement and the desire to continue to try. I wish you all well and prayers have been said for you.


#4

Hi Chris my son was diagnosed April 2015. And his ADEM was very severe too. He is no longer at rehab but was in rehab for about 2 years. I personally have noticed a greater improvement in his speech since he is at home. Unfortunately medical marijuana is illegal in our state so he is on psychiatric drugs. Since he is at home we are slowly trying to wean him off the drugs. He was administered zyprexa and gain 70lbs in the process. They then introduced Wellbutrin and we were to reduce the zyprexa but we had no success as he became aggressive and just unmanageable. To mitigate the effects of the drugs he was placed on valium. I feel we know have more control over his medication since he is at home. He was expected to be very docile at rehab so if he showed any signs of anger which was caused by the antidepressants in the first place he was given valium. So he was on a cocktail of 2 antidepressants, garberpentum, valium, adderall and sleep meds to counter the effects of the adderall which caused him to stay up at night. I have done extensive research on the side effects of the drugs he is on which causes cognitive impairment, aggression, memory problems, hunger, slow metabolism, speech issues, obesity and a host of other issues. We have decided to get him off the anti depressants because of the constant rage and keeping him in a drugged state. So far we have manage to reduced his drugs 20% every 3 weeks as suggested by people that were of antidepressants and my own reading of books and research about reducing medications responsibly
(Harm reduction guide for coming off meds)
Since we have lowered his drug dose his speech has improved, his memory is slowly improving as well and there seems to be an overall heightened awareness. One neurologist has told us he will not fully recover but according to our observations he has not reached a plateau yet. His short term memory is improving very slowly and he still shows very small improvements overall. The other day I asked him " What is neuropheneprin" and he answered, “it is a neurotransmitter”. His long term memory seems to be there but he has a very small attention span. The reason I mention the medication he is on is because I wonder if it hindered his progress. We are coping well with the lowering of the drugs. For the last 3 days it has been such a pleasure being around him. We are doing all be can to mitigate the withdrawal from the psychiatric drugs. We meditate, pray, he gets a massage every day, we go outdoors, listen to music, dance, talk about what he has been experienced, exercise, use vitamins (magnesium is great for mood enhancement) and natural mood enhancement supplements as well (5HTP), vitamin B, hemp oil, etc., chamomile tea and melatonin for sleep (must be administered at sunset) to help him sleep. His behavior has improved over the last week and it has become a pleasure to be around him. He is physically very fit and is able to say how he feels. He can now say that he is in pain, that he is hungry and if he wants to go to bed. It is a blessing that he now can communicate his needs. For the first time last week when he told me “mom, I am hungry”. It brought tears to my eyes because I have not heard those words since he became ill. Just hang in there Chris, we are not sure how far my son will recover as some neurologist feel he will not fully recover but we see extremely slow improvements all the time. All the best to you and your husband. I will remember you both in my prayers.


#5

I forgot to mention that my son aged 32 now also had other complications besides the ADEM diagnosis. The neurosurgeon that did the biopsy on his brain to determine the diagnosis left a hole in his brain and did not close the dura flap which caused his brain to herniate. He therefore had to have a craniotomy. He had a titanium plate placed on the left side of the brain. We are not sure if this is the reason why he is taking so long to recover or if it has caused some brain damage. But the neurosurgeon that did the craniotomy assured us he would fully recover. We had so many conflicting reports about his recovery that we remain cautiously optimistic. All the best to you and your husband.


#6

I was diagnosed in December of '09 the doctors gave me a 1 in 2 million chance of survival and was in a coma not as long mine was 2 week. Marijuana has helped me a lot too.I’m from a small town in Maine and still trying to wrap my head around what’s happened to me since being diagnosed. Good luck in his recovery


#7

How are you doing now? Robert has so many problems that it’s hard to know what to work on. I’m going to be talking to his neurologist next week about deep brain stimulation because he was left with a condition called dystonia which is causing his toes to curl under and one of his hands to be crippled. I also think it’s causing his speech issues. One day at a time but sometimes I fear we will never get back to any sort of normal.


#8

I always watch for your comments regarding your son. Thank you for sharing. Its so helpful to see that we are not alone in what is happening. It feels very lonely sometimes.


#9

Hi Kris
My son’s progress is extremely slow but there is progress.I managed to wean him off Zyprexa. It was a rather challenging time but he seems to be successfully weaned off. I read the book "Psychiatric drug withdrawal (A guide for prescribers, Therapists and their families - Peter R. Breggin, MD and http://www.willhall.net/files/ComingOffPsychDrugsHarmReductGuide2Edonline.pdf - Icarus project and freedom center) and they both had valuable information on withdrawing from psychiatric drugs.- He is still on 3/4 Wellbutrin and on Gaberpentin for seizures. He just had his first 5 minute seizure about a week ago on a Friday. We took him to the emergency room and they did a cat scan. It did not show any new information but I did read that he had brain damage on the bilateral frontal lobes and left occipital lobe including the demyelination. He then had another seizure on the Sunday for around 2 minutes. On Monday we had an appointment with the neurologist and the MRI done a week before the seizure showed no active or new lesions. It did not show anything out of the ordinary it was pretty much the same as the last MRI. We are doing an eeg next week and the neurologist whats to do another high chemo dose again in October. Not happy about this because I read about “chemo brain” and I wonder if this is not hampering his progress because they give him high doses every six months to prevent another attack since his ADEM attack was so severe. I know some alternate treatment approaches do not believe the chemo is a successful immuno suppressent as it does more harm than good. We fear that if we do not do it he may get an attack that we will regret. We have an appointment with a functional medicine doctor for an alternative to the current seizure medication as he has bouts of anger but not as severe as when he was on zyprexa. He had gained 70 lbs on zyprexa and was physically aggressive and even broke my car windscreen. Since off zyprexa he has lost 18 lbs. It was really unbearable to live with him and take care of him. We are strongly considering the use of cbd oil because it helps with depression and seizures. We will discuss this option with our functional medicine doctor. There is Dr. Klenner’s approach to treating MS patients to help build the myelin sheath I want to discuss this with my functional doctor. I did send him the article not sure what will come of it.(http://www.townsendletter.com/Klenner/KlennerProtocol_forMS.pdf) He discusses the use of B vitamins to help grow the myelin. I spoke to one on my son’s University friend’s and he told me to try and teach him chemistry as my son was very passionate about chemistry. He worked as a i phone app developer at a bank and I tried in vain to teach him about app development and he showed no interest. The I decided to watch chemistry videos, experiments chemical structures etc. I was surprised to see how much he knew. I did verify to see if he was correct and he seems to understand more than he can communicate. He, for example, told me NH2 stands for Amine. He can label the chemical structure of chemicals. He knows the atomic number of elements in the periodic table and what every abbreviation stands for. I asked him what are bitt coins and he aswered, “digital currency” He is able to watch television programs for hours on end and loves watching the science channel. He was able to get me a chocolate from upstairs when I asked him to. He could not do that before. He asked me for the first time yesterday to teach him from his Aphasia workbook. We completed around 12 pages and he got 95% right. I see a slight improvement in his attention span and a motivation to learn. The neurologist said the improvement in his long term memory could be because he is off the zyprexa as the psych meds can made you quite fuzzy. His short term memory is still a challenge. He is now able to choose what he wants. He always chose the last choice he heard but that has changed now. He struggles to communicate but he speaks more to me because I constantly try to turn everything into a teachable moment. His long term memory seems good but he struggles with speech and attention span but i do see him watching and focusing on tv programs and understanding the content. He does not pace constantly as he did before. He is able to understand the comedy and jokes. Sometimes I wonder if he ever will get better but he slowly shows signs of improvement. I hope my zealousness for his recovery does not make me see things that I want to see but he has not yet reached a plateau in his recovery. He independently builds 48 piece puzzles but he is slow in building them. I still think of the one neurologist that told us he will not recover but I just cannot give up trying to help rewire his brain. I still pray for a miracle. I cannot believe that he knows such complicated information but cannot function normally. It is just so hard to come to terms with who he now is. I miss my son so much but I do see little glimpses of his old self. So we forge on as the alternative is just too scary. I pray that your husband gets better and better. I will let you know what the functional doctor suggests. Take care Chris I am sure this must be the most challenging time in your life. Sending you a virtual hug. “When the going gets tough the tough gets going”


#10

Hi Kris. Not sure if you heard about this doctor. Michael Lewis -
Website - Brain health education. org." Here is a link to a podcast.


He discusses-omega-3s-and-how-they-help-after-brain-injury. He wrote the book. “When brains collide” - available on amazon. He highly recommends high doses of fish oil. We are noticing very slow continued improvements in my son. For the first time this week he started playing games on his i pad without any encouragement from me. He even ask me if we could do some work from his Aphasia handbook. I am giving him Naicin and make sure he gets the flush (for the flush give on an empty stomach and with a hot beverage - this is based on Dr. Klenner’s protocol used for MS patients - Naicin helps to send blood to scar tissue in order to assist healing) and we are also giving him cbd oil for depression,( It works wonders- such a pleasure to be around him now.) and seizures. I also added Vitamin B complex, Vitamin E , and magnesium. It is difficult to give him the vitamins as he does not always want to take it but I manage what I can. I was finally able to give him vitamin E oil tablets because he struggled to swallow the medication before as he chewed all his medication. I am seeing a functional medication Doctor a week from now and will let you know what he thinks. Our biggest issue is inability to communicate verbally and he really does not like to read or write. His personal trainer at the gym said she has seen a big improvement in him in terms of his awareness and since off the zyprexa he has lost 21 lbs and looks more like his old self. There are many times I feel so hurt that he has to go through this and although one neurologist told us he will not recover he continues to amaze us. Just yesterday he thought me what the word “Carboxylate” means. I am so amazed at how he understands complex chemistry concepts. His long term memory seems to be ok. Praying for your husband as well. I hope him and my son get better and better. Tell him everyday how well his brain is improving. We should not underestimate the power of belief and the placebo effect. Virtual hug.


#11

Hi Sarah,
I got lost in the recovery process and haven’t been here in so long. How is your son? My husband is improving, very slowly. He still can’t walk or sit himself up in bed and we struggle with anger and frustration because he still has trouble verbalizing.

Hoping he will get back into an in patient rehab setting soon for more intensive therapy. Sometimes this seems never ending.
Kris


#12

Hi Kris. My son is just finishing cognitive rehab this month. He is still in recovery but it is such a slow process. Physically he has no issues and is very strong.He has just started talking recently. It almost feels like he is a toddler again. Everyday he uses a few new words. He notices the names of stores and streets and will read it out loud. But still struggles to find some words. No issues with incontinence he just recently will tell me that he needs to go to the rest room. It has been quite a roller coaster with his moods but for the last two months his mood is exceptionally well. They finally discovered that higher doses of anti seizure meds and low dose of different psyh meds helps with the anger. He is on 20mg of Abilify there is some research on pubmed that it helps with brain healing. We took him to the AMEN Clinics in April this year and they did a Spect scan. They found low blood flow on the frontal lobe and and on the left temporal lobe (where surgery was done to correct the biopsy where the surgeon left a hole in the brain). They recommended we do around 80 sessions of HBOT, high doses of Vitamin C and NAD. They also suggest we stop the chemo treatments that was done every 6 months to prevent another attack, So we are now at that 6 month mark and he had no new ADEM attack. Besides the brain injury the chemo also causes chemo brain which does not aid brain recovery, in fact it hinders it. We will therefore stop all future chemo treatments for now. We are at around 21 HBOT sessions now. The AMEN Clinics also suggested we stop the sleep meds and we now give him 3 to 6 magnesium for sleep. (neuro-mag - also helps the brain) With the sleep meds that our doctors prescribed he still struggled to sleep but now sleeps through the night. I am not sure if it the normal progression of his recovery or the HBOT but he is talking a little more his short term memory is slowly improving and the other day I saw him type in single letter words all by himself on the computer. He is able to find things he is looking for on the computer. I was shocked and elated all at the same time when he correctly typed words something he was not able to do… He still has issues with attention span, cannot read sentences but can read words and phrases. He still needs to be supervised all the time. And sometimes gets confused not sure if it because of the brain or side effects of the meds. We have not reached a plateau in his recovery but it is a very slow process. I now just chose to focus on what he can do instead of what he cannot do. And I pray for a miracle everyday. Praying that your husband continues to improve.