Update on my son's status - 23 August 2016

Update on my son’s Status

My son aged 32 was formally diagnosed with ADEM on April
2015. Recovery is slow as expected with ADEM but there is recovery. He did an
MRI last month, which still showed visible lesions predominantly on the left
side of the brain. Apparently there is no technology that is being used to
ascertain how much myelin repair has occurred thus far. It does not really show
up on the MRI. He is scheduled for chemo (Rituximab) in September 2016.
According to neurologist research shows that adults normally relapse in the
first two years. Because my son’s ADEM attack was so severe the plan was to do
chemo every 6 months for two years from the time the lesions were no longer
active. (Growing) His lesions were still active in November 2015 as seen on the
MRI. We seemed to have hit a sweet spot with the medications. He is on
Wellbutrin and Cyprexa for depression. He also takes Vitamin D3 (10 000mcg) and
Biotin (10 000mcg) as well as Garpentin for the muscle spasms he still
complains about. He was taken off Ritalin and it was replaced with Adderall. He
was very agitated when he was on Ritalin. He has been diagnosed with Wernicke’s
Aphasia as a result of the ADEM attack. His biggest issue is that he still
struggles to read and write but we have seen a slight improvements in this
area. His verbal vocabulary has also increased. He is starting to spell words
correctly but is only able to write short phrases. He seems to know and
understand more than he can communicate and seems very frustrated because of
this. I think the psychiatric mediation helps with this. We notice agitation in
the morning just before he has to get his next dose. I was personally against
medication but I do not think he will cope without it. He gets so agitated that
it becomes unbearable to cope with him. His memory seems to be quite intact
just communication is an issue and the odd behavior here and there. We were
able to get him into another rehab facility. He attended rehab during the day
for 3 days a week. The caseworker at the previous rehab facility informed us
that she could not justify his rehab because of the slow progress and he had
been there for almost a year. He was home for two weeks and it was really quite
challenging, as he was very frustrated and agitated. I had to ask his tutor to
leave because he refused to read or do any of the brain exercises with her. He
is doing much better at the new rehab not sure if the change was good for him
or if it is the increased healing that created the change. I was so elated when
he wrote to his friend “you look awesome” since he is struggling to write. I am
so grateful to everyone’s input on this website because it gives me hope as
recovery is just so slow.

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Sarah,You sound better today. I’m glad your son is showing some progress. It can all be so slow and frustrating; don’t forget to take care of yourself as well. Lynn

Thanks Lynn. I just started a 90 day exercise challenge. I took the conscious decision to take care of myself. I have not made the time since he became ill in April 2015. I have accepted the new normal as I think it is going to a while before he recovers fully as our neurologist believes.

That’s great…don’t forget good nutrition is really important too. Take care, Lynn

Good for you, Sarah. I always think of the oxygen mask safety demo in the aircraft: put on your own oxygen mask before helping someone else. Being a caregiver is like that. Look after yourself well, so that you will be able to look after others. We sometimes forget about that!
All the best to you

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