My son
 

Ok, all my old buddies know the story about my son but here I go:

Chris is 24 and was dx'd in April of 2007 - has had several flares, was on Avonex, off Avonex for 6 weeks and now Tysabri #2, #3 is 2/5.

He is pretty much using either his walker or wheelchair and I work full time.

I just wish I knew what the future holds, it is afffecting my work as I feel I should be home with him. Also work just seems so unimportant now although without a job we would be homeless. Ok, just venting, sorry!!

Hi Dedra! Well, my DS doesn't have MS, but he has been ill all his life w/severe health issues, kidney transplant, near blind, SO~ I know how fretful and hard it is on you. We never stop worrying about our children.

A transplant is a stall, not a cure~ so I don't know what my DS's future holds either, so what do we do?? We pray and we love them and we take today and try (hard as we can) not to think of tomorrow. I know, easier said than done. My DD is also having health issues. It's hard.

Has Chris joined here yet? It would be good for him. Please know that I know what your'e feeling. I don't work, my DS is out on his own, but I worry about him alot. I'm here if you need me...

:hug:

Hi Dedra. How is Chris doing?

Oh the joys of motherhood. That torn feeling of staying home with the kids versus working never really goes away does it. I'm sorry you are going through that right now as I know it must be difficult for you. Hopefully the Ty will work for Chris and things will turn around for the better.

Hang in there!

Thank you, I know everyone probably thinks he's not a child he is 24, but for one he is still my baby and two at the current time he can't work so like you said I will never stop being a mother.

He is a member at MSW, but I haven't told him about this place yet - he doesn't post very often - impatient I think for replies and he just does better in person. We do have dinner with MommaD and that helps.

don't be sorry! and vent away friend :hug:

be care full of your own well being too.... depression can twist what is good into something bad and exasperate an already difficult experience....

you rest yourself...
do what is right by eating well, trying to get good night's rest, keeping disciplined with your routine of work, chores, self care.....:Zzzz:

you know time heals, but i have to remindja anyway :hug:

My son is 29 Dedra, so they are always going to be our "babies". We worry b/c we're Moms and b/c we love them so much.

You bet DM - I just wish I could find something for him to do to get him out in the world and be able to meet someone.

This is still pretty new to both of us so we are just taking one day at a time right now.

Hi Dedra:hug: I'm glad you joined us. I hope your son Chris decides to join us too. I think it would do him good!

Take care :p

Dedra, will Chris be joining us here?

I haven't had the opportunity to so him this new link - maybe this weekend I will try to get him on.

He does better in person though - really enjoyed the Houston Get Together and we have had dinner since then with MommaD and her DD Melissa.

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.

Your son
 

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!:winky:

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

Hi,Dedra
I'll pray for Chris and hope he feels better real soon,hopefully the steriods will help him. Take care Kristi.

Thanks Kristi - me too!!!

just reading your updates dedra.
thanks for keeping us posted.

Hey Dedra,

Hope Chris continues to stay stable and will pray that he starts to find some improvement. I think there's a reason they say being a parent is the hardest job in the world. I'm sure Chris wouldn't want you to quit your job for his sake.

I hope that he can find some PT/OT close to town for you. If not, any chance any local organizations have volunteers for transportation? Or possibly go once a week, and can you or someone else work with him on exercises at home the rest of the week (exercises that would be safe, not ones that required a lot of weight bearing strength)?

When I'm not feeling well, I see that look of concern in my parent's eyes - as you said, I'm one of their babies at 44. They are in their early 80s, and are still trying to make my life easier. They like to share their knowledge of things/products they have found as they aged. Since I struggle with arm/hand weakness, the automatic jar opener was the latest. I'm fortunate to have them.

Chris has one great Mom!

Hang in there,
Kathy