Acute Disseminated Encephalomyelitis (ADEM) Support Group

Update on Robert


#1

Things seem to be looking up! Robert is still making small improvements and I think he is going to be going to a more acute rehab facility that specializes in brain injury. I am feeling really hopeful about his recovery although it is becoming more and more real that this is going to take a lot of time and patience. He is still not able to speak or walk or feed himself etc., but he is trying to communicate and it’s very clear that he understands us. So… I’m grateful and my husband’s case was pretty severe so there is hope.
Kris :heart:


#2

Hi Kris glad to hear about Robert's progress.Thank you so much for the update. My son is still recovering but just very slow. It is such a long road but we have no choice but to just hang in there. My son's speech has improved. He is talking a lot more now. I remember when my son was at the stage Robert is now we listened to plenty of music and it seemed to have helped. It enhanced his mood and it also helps with the brain's healing. His memory has improved as well. He is starting to read again but we break up the sentences into phrases and place them on flashcards. He still has problems with sequencing. We watch videos about the work he was doing and he understands some of it. Attention span is low and the neurologist has placed him on Ritalin to improve his attention span. He has just started enjoying building puzzles before he showed no interest in them. Reading about your experience reminds me of where we were about 10 months ago. I do get so excited when we make even the smallest progress. But hopefully he recovers sooner as every case is different.The good thing as hard as this road is, is that there is progress. I have a close friend that has a dad with Alzheimer's and I do notice the slow but constant healing and improvement with ADEM compared to her Dad's that is sadly declining. Our neurologist are confident about 100% healing but do say that it may take about a year from now. So we are looking 2yrs from the time he was admitted. The neurologist just informed us today that they initially believed full recovery was 12 to 18 months but the research is indicating 2 to 3 years.This is just going to be our new normal for awhile and I just have to resign myself to it. We are hoping that the biotin supplements will aid in restoring the myelin as from my own personal research based on LauraK recommendation it seems to be promising in restoring the myelin. All the best to you and your family. Hugs and prayers to you as well.


#3

Thank you Sarah! Can you give me more info on the biotin supplements.



Sarah said:

Hi Kris glad to hear about Robert's progress.Thank you so much for the update. My son is still recovering but just very slow. It is such a long road but we have no choice but to just hang in there. My son's speech has improved. He is talking a lot more now. I remember when my son was at the stage Robert is now we listened to plenty of music and it seemed to have helped. It enhanced his mood and it also helps with the brain's healing. His memory has improved as well. He is starting to read again but we break up the sentences into phrases and place them on flashcards. He still has problems with sequencing. We watch videos about the work he was doing and he understands some of it. Attention span is low and the neurologist has placed him on Ritalin to improve his attention span. He has just started enjoying building puzzles before he showed no interest in them. Reading about your experience reminds me of where we were about 10 months ago. I do get so excited when we make even the smallest progress. But hopefully he recovers sooner as every case is different.The good thing as hard as this road is, is that there is progress. I have a close friend that has a dad with Alzheimer's and I do notice the slow but constant healing and improvement with ADEM compared to her Dad's that is sadly declining. Our neurologist are confident about 100% healing but do say that it may take about a year from now. So we are looking 2yrs from the time he was admitted. The neurologist just informed us today that they initially believed full recovery was 12 to 18 months but the research is indicating 2 to 3 years.This is just going to be our new normal for awhile and I just have to resign myself to it. We are hoping that the biotin supplements will aid in restoring the myelin as from my own personal research based on LauraK recommendation it seems to be promising in restoring the myelin. All the best to you and your family. Hugs and prayers to you as well.


#4

We spoke to our neurologist about the biotin supplements and he said there was no harm in trying it and we should get the highest dosage. It is useful for MS patients in helping build the myelin according to the latest research.He also informed us that they are busy with research that will take about two years to complete using stem cells to rebuild the myelin.

http://www.healthline.com/health-news/high-doses-of-biotin-improve-symptoms-of-progressive-ms-052215 .

We buy the solgar brand from amazon. It has great reviews.

http://www.amazon.com/Solgar-Biotin-Vegetable-Capsules-Count/dp/B009P6BI60/ref=sr_1_2_s_it?s=hpc&ie=UTF8&qid=1462338282&sr=1-2&keywords=biotin+solgar

But the myelin will only start growing will only start growing once the lesions have healed. He is also on 10,000 units of Vitamin D. Apparently according to the neurologist people that have a vitamin D deficiency are more likely to develop acquired brain injuries. He still cannot swallow and therefore chews the tables. The healing process is long because new cells and neurons have to grow as well.I have a grandson and I see the parallels in the baby's mental growth and that of my son but his memory seems to be much better now, This analogy makes it easier for me to understand why recovery takes so long. Hugs and prayers to you and your family.


#5

Thank you, Sarah, for pointing out that you are using the supplements with the knowledge and support of your doctor. A lot of people think that supplements and vitamins are something that you can just take without care or concern. In fact, it is possible for supplements and megadoses of vitamins to interfere with other medical treatment.

Good luck, Kris and Sarah, with your sons' continued recovery.

Seenie from Moderator Support


Sarah said:

We spoke to our neurologist about the biotin supplements and he said there was no harm in trying it and we should get the highest dosage. It is useful for MS patients in helping build the myelin according to the latest research.He also informed us that they are busy with research that will take about two years to complete using stem cells to rebuild the myelin.

http://www.healthline.com/health-news/high-doses-of-biotin-improve-... .

We buy the solgar brand from amazon. It has great reviews.

http://www.amazon.com/Solgar-Biotin-Vegetable-Capsules-Count/dp/B00...

But the myelin will only start growing will only start growing once the lesions have healed. He is also on 10,000 units of Vitamin D. Apparently according to the neurologist people that have a vitamin D deficiency are more likely to develop acquired brain injuries. He still cannot swallow and therefore chews the tables. The healing process is long because new cells and neurons have to grow as well.I have a grandson and I see the parallels in the baby's mental growth and that of my son but his memory seems to be much better now, This analogy makes it easier for me to understand why recovery takes so long. Hugs and prayers to you and your family.