Call me crazy!?

[ku111]

I think this post is a maybe a rant, statement, apology-maybe all 3!  For those of you who don't know my son Jordan, now 13, had ADEM when he was 11 years old.  Now he has "highly suspected MS".  The ARNP we saw in January that specializes in MS stated she doesn't understand why this isn't already diagnosed and she is sure after reviewing the file he does have MS but of course she can't step on Neurology toes.  Er!  Oh well, whatever, it is what it is...  Anyway, took Jordan to MS Specialist last week and we had reviewed with him that he needs to start "speaking up" about how HE feels.  He had been feeling weak and extremely tired for about 33 days this time  (you know the usual, visual disturbances, slurred speech, one leg not working like the other, zaps and numbness at random-he was so tired of it!  MRI "no new lesions").  We were so proud of him.  He sat there and told her what he has been feeling and it was taking forever to get past the symptoms this time.  He said he was tired of missing out on fun with his friends and with golf season coming up he wanted to get better.  I now she was very busy and overbooked.  Sorry about that but we have had the appointment for 6 months and this is the career you chose, anyway...  She simply stated maybe we should try Prozac and that depression intensifies symptoms.  Yep, she did.  Now, if you know Jordan, you know that he has been amazing through this whole thing.  He did amazing during rehab, he knows he is different now but always has strived to leave baseball and basketball behind-support his friends but move on and give his all to golf that he can do.  Even went to ski slopes (oh, were we scared as parents but hey, we want him to enjoy life-have fun.)  In his words, with a huge smile "Went down highest hill 11 times, 6 times were EPIC and Awsome and well the other 5 "crashed and burned" and I will pay for this tomorrow but it will so be worth it!".  

I do realize that depression will all make things worse but how can you guys not get down sometimes when day after day the symptoms are worse than others?  How can you not be a little depressed to not be able to have enough energy to go do something really fun with family or friends?  How can you not politely decline because you are slurring your speech, not thinking just right or are dragging a leg a little today?  Don't really want the whole world to know or maybe slow everyone down.  Maybe your body is so worn out that you need to sleep the next 24 hours to regain some energy or have to rest for several more days to get back on top of things again.  I can think of things you would rather be doing.

Anyway, I AM HIS MOTHER and I know him well!  He is amazing, he is my inspiration to be better and understand the world and chronic conditions, he has made me a better nurse, he has made me smile so big when he feels good and can swing that golf drive farther than his dad some days-I could watch him for hours when he is smiling, laughing and having a good day.  In his words, "Depression-maybe some days when I have no energy and I would rather be with my friends, playing golf, watching TV, on the computer but anything rather than sleeping and my body weak-it gets old".  "But I get right back up on the good days and have the most fun I can".  

I am open minded.  We may need medication for depression some day and so what.  Lots of people take meds and if they feel better for it-great!  All in all, I think this is a fine line between depression and just tired of your body not cooperating with what you would rather be doing.  ALL OF YOU HAVE INSPIRED ME AND ALL THE AMAZING THINGS YOU HAVE DONE AND STILL DO TO GUIDE ME-US, IN THIS JOURNEY!  Thank you!

We are passing on the Prozac for now, we will concentrate on exercise and maybe our next appointment will be less overbooked.  I will be working on Jordan to speak up louder and stand firm in HOW HE FEELS.  After all, I don't have MS, so how would I know.  To all those feeling pretty good today enjoy!  To those not, maybe tomorrow.  I wish you well!

[Lulu54]

I was wondering about Jordan just recently and although I don't like what I am reading, I am so happy you checked in with this update.   Ess gave you excellent advice about treating those symptoms - they can label the disease later.  You are a great role model for every mom out there looking for answers for their child.  Keep advocating and especially keep teaching Jordan how to work with this crazy medical system.

give him gentle hugs from us,
Laura

[Ojibajo]

I wouldn't be comfortable with putting my 13-year-old on Prozac either. I hope that Jordan continues to improve.

[essdipity]

It would certainly be understandable if your son were depressed, given all he has to deal with. Depression secondary to MS is extremely common. Depression as a primary symptom also happens, because of lesions in the mood centers of the brain. In Jordan's case it doesn't sound as if primary depression is happening, but it's still possible he is depressed from all that has gone on, together with his consequent limitations. In that case, an antidepressant may be indicated, though personally I wouldn't give one to a child without first scoping this out with a good psychiatrist or psychopharmacologist. That's one issue.

The more pressing issue, though, centers on the symptoms of his disease. He is tired and weary. Is he getting enough sleep? Is he in pain? There are meds and treatments for these. Is he dragging one leg? That sure can tire him out. Ampyra helps some people a lot with walking. Lyrica and Neurontin are good for nerve pain. There are meds for spasms. Provigil or Nuvigil help many with energy. Etc.

Perhaps your boy is already being treated with some of these, I really don't know. But if not, why not insist that his medical people get more proactive about treating his symptoms. You may have to wait and wait for some diagnosis to appear, but meanwhile you can pounce on these people to try to make Jordon's life more comfortable and more normal through treating his symptoms more aggressively.

Good luck to you and Jordan, and please keep us in the loop.

ess