Dedra,

It doesn't matter what age our children are - they will always be our "babies". Mine are 20 and 24. And they know they always have a place to come home to no matter what age they are!

i'm glad you're here dedra.

has your son had any OT or PT?
i wonder if that might help him function at a more optimum level and give him the confidence to get out?

Nursenancy,

We are currently trying to get with medicaid to see if there are PT or OT out by where we live. The other one was at least 45 minutes away and if they want him to come 3 days a week there is just no way.

Hopefully we will find one on this side of town.

I totally understand Dedra. You might know already but I'll tell you my son's story.At 6 years old he started having some severe gastro problems like projectile vomiting, severe abdominal pain, cronic diarrhea, and weight loss. Jump ahead 3 years later he was dx with Crohn's Disease. We have run the gamut with this disease. He's almost 17 now. He missed 55 days of school last year. He had a bowel resection in November of 2006.It is so hard to watch you baby suffer and not be able to do anything except stand by and support them. Just know that you are not alone.Btw, I'll be starting Tysabri soon and I'm going to start a log when I do.

thanks Joelle, sometimes I do have to catch myself and say "wow things could be so much worse" this isn't life threating, but I can tell you it IS life altering!!

I will keep you and your son in my prayers!!!

BTW - good luch with your Tysabri and I will be looking for your posts.

is always in my thoughts and prayers.

Hi Joellelee!

I have been following your story and was wondering if you knew that Tysabri was just approved for Crohn's disease too?

People who were in the trials have had amazing results with it. Most have run the gamut of all the available drugs, are on the verge of, or have had resections, and many have had returning disease after resection.

It comes with the standard warnings about use with other immunosuppressing drugs ( Remicade, Humira, etc) but for those who aren't on those drugs or who haven't had them for a specified amount of time, it is now available.

I hope all goes well with you and Tysabri! Please let us know how it goes with you.

Dedra,

How are you and nice to see you over here!

I am sorry things aren't moving along for Chris as he and you would like them to. I know how darned hard it was for me to WAIT and wonder if I was actually having results or if it was all wishful thinking on my part when something seemed better.

I finally decided that since I wasn't having serial relapses and no ongoing symptoms, it was working the way it was meant to and I relaxed. It really wasn't until I saw my 6 months MRI and went for my eye tests that I SAW clinical proof to back up what I was actually feeling! I hated questioning my own mind and wondering if it was just wishful thinking! I am usually so decisive and positive! ( Grrrr at MS doing THAT to me!)

This has been the longest I have been without a relapse since diagnosis and I am loving it! If it wasn't for the ongoing spazz and stiffness stuff I would swear it was gone. I am not sure if part of it is positive thinking or what, but I can't argue with the clinical testing results.

Has Chris had a relapse since he started? Has he ( or you) noticed anything that seems better than it was? Even just being able to balance my checkbook was a BONUS for me, because of all the cognitive difficulties I was having. I figure every little improvement is a victory for me.

I hope it all works out for Chris ( and for you, Mom!) Tell him to come on over and say hello to us here!

Thanks Riverwild. I know about Ty for Crohn's and just about every other drug for it too, LOL.He's been taking 6mp for his Crohn's and has been doing well. I expect that the resection will only help for few years but hopefully the 6mp will keep him stable for a while. I'd like for him to be a little older so that he can make the Ty decision on his own. I also want to see how I react to it. Hey, we might be able to be Ty buddies in a couple of years! He was not thrlled when I told him that, ah, teenagers!

Riverwild,

Thanks, I'm glad I found all of you luckily because of Sandy - I'm not sure how to answer your post.

Chris had to be off Avonex for six weeks and that's when he got really bad - not sure if it was a flare or just being off the Avonex. I have seen no change since he hit rock bottom.

Chris is going to talk to the Dr. about a 5 day IVSM when we have an appointment with him before #3 on 2/5.

Thanks for asking