Acute Disseminated Encephalomyelitis (ADEM) Support Group

Update on my sons progress - May 13, 2017


#1

My son aged 32 had his severe ADEM attack April 2015. Treatment received was steroids, 7 plasma exchanges, 3 rounds of Cytoxan (chemo) and around 5 rounds of Ritaxan (chemo). His lesions were active from around April 2015 to November 2015. It left him unable to walk, speak, read, write and was severely memory impaired. There seems to be disagreement about his recovery from the neurologist that have seen him. Some believe a full recovery is possible and others believe not so much. But we see continued improvement all the time. The initial diagnosis was Wernicke’s Aphasia but it is no believed that he no longer has Wernicke’s Aphasia. His inability to read a paragraph of information or write more than one sentence at a time according to the rehab center is due to the fact that he has an extremely short attention span. He can only following one direction or instruction at a time. They do believe that his long term memory is there and his memory is improving but because of his short attention span he is unable to access it effectively. I truly wish I was informed sooner but I was just introduced to the concept of “effortless learning” this week by the tutors from the cognitive rehabilitation center. I do now realize that my teaching methods may have caused plenty of frustration for my son. Effortless learning is a teaching method used for individuals with brain injuries. I would normally ask him what did he have for lunch and he would answer, “I don’t know.” the correct method would be to tell him for example; “Did you enjoy the chicken sandwich I gave you today?” After he answers “yes” I should then ask; “What did you have for lunch today? I tried this now when talking to him and he responds correctly. This is also helping him with improving his speech. My reason for putting this out here is that I hope this could help someone who has a family member recovering from a brain injury. He seems to understand what he did at work and university (He majored in organic chemistry). To me there is sometimes a disconnect that he remembers highly intellectual and complicated information and sometimes behaves very strangely. Still unpacking my cupboards etc. He only remembers the last word or sentence. And this is due to his very low attention span. We are now transiting him to live and home and I will be more involved in teaching him. The Cognitive Rehabilitation center believes that he will be better served at home as there are less distractions and he may make continued progress at home. This takes me back to the 6 hour cognitive test done at the University hospital. If his attention span is only a minute I am not sure how he was expected to do a 6 hour long test. We do, however, feel blessed we see very slight improvements all the time and we have not reached a plateau yet in terms of recovery.


#2

Sarah, This is such good news. Always remember that “our bodies love us” and he can heal.

Sonie


#3

Glad to hear of the progress and thanks for the update.

Remember two things:

  1. Second and third opinions are valuable and expected so don’t hesitate to find them (or they will find you).

  2. Anything is possible especially when it comes to the brain and mind. It is the most mysterious things in all of creation


#4

Thank you for sharing. Your son sounds a lot like my husband. We just keep plugging away.


#5

Ah Sarah, thank you for sharing. This disease is so cruel. Celebrating every little achievement is all we can do. Sending prayers of love and healing to you and your son. You are a strong and amazing Mother, keep your chin up.


#6

Your story is incredible. I will hold both of you in my heart and prayers. I don’t think Doctors know about recovery. He is very lucky he has you. After doctors could do no more. I stepped in and became the person who has helped my son, more then anyone. I don’t know where your sons lesions were on the brain/spine. with all his treatments, are the lesions still there? please keep us posted!!

Lisa


#7

Thanks everyone for your words of encouragement. Hi Lisa, my son only had lesions on the brain. Most of the lesions were on the left side of the brain but no lesions at the back of the brain. From what we have been told there will always be scar tissue on the brain. The last few MRI’s showed no active lesions on the brain.


#8

Hi Sarah
How is your son now? My husband is also showing similar conditions and its scary to deal with him. He is angry all the time with family members though he is OK with outsiders. I hope your son is independent now. My husband has become unmanageable.
Looking forward to a positive response.

Thanks
Nidhi


#9

I wish I had an easy answer for you. As my son heals rather slowly. His anger became quite intense and we were forced to place him in the psych hospital. The psychiatrist there had the time (4 weeks in total) to change meds etc but our psychiatrist is not really happy because of the side effects of the drugs as some can impede brain recovery. But we have to pick our poison what seems to be working for him now after trying a myriad of drugs over the last three years. The anti seizure meds apparently help with the anger issues. He is on high doses of Depakote (1500mg a day) , one in the morning 500mg and 2 in the evening (1000mg) and on (1200mg)Trileptal 450mg of Trileptal 3 times a day and Inderal (240mg) a blood pressure medication 80mg, 3 times a day. Depokote also is also slow release. . He is also on abilify 20mg and 10mg lexapro once a day. We will wean him off the psychiatric drugs as his anger subsides according to the psychiatrist. He has gained 25lbs in one month and may have to go on Metformin if he continues to gain weigh and his kreatin levels are also elevated. He is hungry all the time and will get angry if you refuse to give him food but it is not as intense as it was before. We do not give him the sleep meds that they recommended because he only sleeps for an hour with the sleep meds instead we give him 6 neuromag magnesium by life extension(does not give you the runs) tablets with no caffeine as that can contribute to not sleeping. Magnesium was recommended by the AMEN clinics. (They also recommended 2 sam-e, 4 seratonin and 2 aswhagandha for depression instead of the psychiatric drugs but my husband is adamant he takes the psychiatric drugs.) I do not have the energy to resist anymore. Our psychiatrist does not believe he needs the psychiatric drugs as the anti seizure meds (Trileptal, Depakote) and the blood pressure medication (Inderal) help with the anger issues. He believes my son is not there yet in his recovery to warrant psychiatric drugs. We will be weaning him off the psychiatric drugs as we notice improvements in his mood. We notice that he is mostly angry in the mornings and according to our functional medical doctors in could be as a result of a hormone imbalance but conventional doctors do not see this as as issue. The best would for your husband would be to have him to be monitored by a psychiatrist and experiment with different drugs and dosages. I have read a book called “No stone unturned” I wrote to the author and he said his son’s anger lasted a decade but the following helped HBOT(Hyperbaric oxygen), Omega-3 fish oils, craniosacral therapy and LENS neurofeedback. We plan to do HBOT as this was recommended by the AMEN clinics because he has brain injury as well. The SPECT scan showed low blood flow on the left side of the brain and on the frontal lobe hence the anger. He does recover all the time just rather slowly. We remain hopeful and positive. Not sure if there are other natural remedies out there but we all do the best we can. I will remember your husband in my prayers. Join brain injury support groups as well. We had to tell the psychiatrist about the anti seizure meds for the anger based on the experience that other parents had. Our psychiatrist was titrating to higer doses of the blood pressure meds (800mg). The issue was that it did not really work and his blood pressure went very low. I hope you can find a solution. I will pray for your husbands recovery as well. Progress is slow but constant. I am grateful for how far we have come and remain hopeful and optimistic.


#10

Hi Sarah
Your ordeal makes my heart sink. Your family will be in my prayers. I pray your son shows good progress from now on and becomes independent very soon. I don’t know what future has for our family.Things are getting difficult to manage.The biggest issue is with incontinence now. He is off catheter for more than 1 month now but 70% of the times he pees in clothes. Though sometimes he is able to use washroom on his own. He doesn’t go to washroom even after several requests and reminders. Dont know how long it will last. Apart from mental and cognitive issues his anger also gets unmanageable. I just pray no one suffers from this scary disease.
Regards
Nidhi


#11

My son was incontinent too but know seems to have full control now. It has been 3 years. We do make sure to remind him when we are not at home. At home he manages very well. We did use diapers in the beginning. If you call 211 and see if they are able to help you procure what you may need. I was not aware of this service. The agency providing care for my son informed me of this. If you have long term care insurance with custodial care you may be able to get the help of caregivers to assist you. We do not have this insurance so out of pocket cost is $22 an hour. This will take the pressure off. I notice that my son mostly is just angry at me and gets on well with others. We also did some training on anger management. It is best not to engage them or even try to reason with them. Ignore the behavior or redirect. Redirecting does not always work. We do have a younger son that my son always listens to. Sometimes he does not want to take his meds from us. We have a caregiver on Saturday that takes him to movies, lunch, a walk in the park and to the library. That helps because his anger is primarily directed at me. Just take one day at a time. Celebrate and be grateful for every slight improvement. I hope you have some help. It is tough to do this on your own. I am so apprehensive of my son when he gets angry but I do understand this is the brain injury. He was not like that in the past. Take care. Prayers and strength to you and your family.


#12

Hi Sarah
Thanks for sharing the details but I am in India and all these facilities are there in US I guess. But the plus point is I live with my in laws so we have his parents with us. How long did it take for him to get bladder control back ?
Did you hear about Hyperbaric Oxygen Therapy and neurofeedback therapy for mental dysfunction ? I did some research around it on internet and I did saw positive reviews for some brain injuries.As ADEM is rare I dint see anyone with ADEM trying the same.
Did you hear about them or your neuro suggested about them ? Thsese therapies are very expensive in India but if it hels then I want to give it a try. Can you try to figure out about these therapies with your neuro ?

Thanks
Nidhi


#13

We found out 11/2 years after the ADEM attack that he has suffered brain damage as well because his ADEM attack was so severe and the doctor that did the biopsy to determine the diagnosis did not close the hole in the brain he created. It caused the brain to herniate and caused swelling on the brain. We had to do a craniotomy to close the hole. They placed a titanium plate on the left side of the brain and drained the fluid. So we had complications that caused brain damage but he continues to slowly improve so hopefully your husband does not have these issues. Everyone recovers differently and at their own pace. I think my son’s case is more extreme. We went to the AMEN clinics and based on the SPECT scan there is low blood flow on the side where the surgery was done. HBOT is based on anecdotal research but it is believed that it speeds up brain healing. Myelin does repair but it does take time. We took my son to the AMEN clinics and they recommended the HBOT treatments because of the brain injury. I am not sure about your husbands case but we have done the necessary testing. There may be no brain injury it just depends on how severe the lesions are. We unfortunately had complications in my son’s case. He was incontinent for about 4 months but he was at a cognitive rehab facility where he was retrained to use the toilet and we just reminded him to go all the time. There will be accidents along the way but generally he will recover. Make peace with this it will get better. Just take one day at a time and focus on the little improvements. Recovery is not linear there will be good and bad day but the general trend is upward. A good book I would suggest and there are many videos on U tube is by Joe Dispenza - “You are the placebo” I tell my son everyday that his brain is healing. I have done energy healing as well and pray and mediate when he is in the mood. Exercise is also very beneficial. I will never give up. Also research Dr. F.R. Klenner (Townsend Letter) research on myelin repair. Check with your doctors as well. I have spent the last 3 years reading and researching as much as can and I want my son to be the best he can be. You husband will get better. Prayers and hugs for you and your family.