Daily heartbreak for my son
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February 11, 2011 at 12:43 am
My now 18-yr. old son desperately wants to run again but the CIDP has robbed him of that. It struck him in 2009 after his heart stopped for 45 minutes for unknown reasons and it took that much time for a defibrillator to arrive to shock his heart and start it again. He was given less than 5 % chance to live through the night then we were told he was essentially braindead. He slowly came out of his coma and spent 56 days in hospital relearning to talk, use his arms, hands, and to walk with a walker. 4 weeks after release he was diagnosed with CIDP and though he walks (laborously) and sees a trainer 3X a week, he is getting frustrated that he cannot run or walk long distances without exhaustion. His first CIDP treatment was 5 days inpatient IviG (1 bag per day). Then 2 weeks additional inatient therapy. The Dr.’s are amazed at his progress considering the brain damage but he just wants to run and play Lacrosse again! Any encouragement is appreciated. He is getting more down each week and begged me to find a surgery that would allow him to run. If only it were that easy. Thanks for letting me vent.
Robert A.
Baton Rouge, LA.
[email]raymond651@cox.net[/email] -
February 11, 2011 at 9:38 am
Hi there & welcome.
My daughter was dx’d with CIDP @ 4 years old. I know how difficult it is to see your child go through this.
My daughter has recently started taking roller skating lessons & is learning how to do tricks like jumps & spins. I never thought I would see the day when she was able to do those kinds of things. This last summer she climbed a 20 foot rock wall & got to ring the bell at the top.
I say this to you so you can know that ALL things are possible. It just takes time.
I’m wondering how much IVIG your son gets. You stated he got a “bag a day”. IVIG dosage is based on weight. A loading dose is typically 2 grams per kilogram & a maintenance dose is usually 1 gram per kilogram. It’s important to make sure he is getting the correct dose.
How often does he get IVIG? It’s important to be on a regular schedule. That alone can drastically help with the fatigue.
Kelly
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February 11, 2011 at 10:18 am
[FONT=”Microsoft Sans Serif”]i am very sorry for your son and family–
i sent you an email explaining how myself and many others have gotten better from cidp by having a stem cell transplant; and who to contact to inquire further.
in any case, best to you all–
alice[/FONT] -
February 11, 2011 at 12:18 pm
Hi Robert,
I sent you a private message. -
February 13, 2011 at 9:24 am
Check out the posts from Rhomcc – her son went through the same thing but is doing much better now and is back in college. Worth the read!
With all your son’s complications, it would be great to get him to a teaching hospital – there are several here in Houston that are world famous. Hermann is one that comes to mind – that is where Congresswoman Gifford is receiving her therapy for brain damage. Additonally, this hospital is also world renowned in neurology.
I am so sorry to hear about the challenges your son experiences. May God Bless and keep you and your family!
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February 13, 2011 at 10:12 am
[FONT=”Microsoft Sans Serif”]yes, what linda says is exactly what i was suggesting on the phone, at least as a starting point. getting brad hooked up with a good teaching hospital, to clearly diagnosis how much is brain damage and what may be cidp would be unmeasurably helpful in your treatment and prognostic expectations. i found a list of teaching hospitals in the US:
[url]http://www.healthlinksusa.com/teaching_hospitals.htm[/url]sorry we missed each other yesterday. if you want to talk some more, please don’t hesitate to call again robert.
best,
alice[/FONT] -
February 16, 2011 at 11:35 am
Hello Robert,
My name is Ryan and i am 22 years old, my mother is Rhomcc. I have gone through what your son is going through as well. Actually all i want to do is run, but i still can not. I went through every kind of treatment out there for CIDP, IVIg, Plasma Pharisees, Steroids, and finally my life saving treatment…chemotherapy. I had started to research chemo a few months after diagnoses. Within my first year of diagnosis i spent almost 6 months in the hospital. And did Physical therapy 7 days a week for 6 hours a day, after i got out of the hospital i did Physical therapy and occupational therapy for 2 years and 2 days a week. I am now back at college and i get around for the most part pretty fine. But the one thing i wish i could do is RUN. I use to run a few miles a day, and now i can only walk. But i am ok with it. If you would like to talk to me by email or to talk on the phone i am can do that.
My email is [email]mccom1rg@gmail.com[/email] and my phone number is 616-566-8370. I do have classes so if i do not pick up i will call back within an hour or two.
Tell your son that it takes time, and could take years. Just keep up the work and dont give up.Good luck with everything.
Ryan -
February 17, 2011 at 2:36 am
Hi Robert, I’m sorry you have to watch your son struggle soo much.
I havent really got up to date with your sons current treatment etc but would like to wish him and your family all the best and to encourage you all to hold onto your hopes and dreams!
I am 37 now (diagnoised for nearly 4 years) and remain on agressive CIDP medication (IVIG, methylpred, and immunosupressants). I was told i would be lucky to walk with aides, let alone run!
For the last 2 years i have been regulary competing in half marathon runs, in Dec 2010 i completed my first half ironman (2km sea swim, 90km bike and 21.1 km run) and next weekend i compete in the highest mountain race in Zealand over a 28km course.
Please dont give up hope – the journey to your sons dream again is obviously going to be very long and challenging for you all. Dont under-estimate taking one day at a time.
I was a quadraplegic and have had to relearn everything in life again (several times with each relapse etc) from holding a pen, to walking. At times i thought the Docs were right and i would never walk unaided.
Stay strong and focused – yet seek help immediately if deteriorations are noted.
All the best and my your days get easier, and may your son reach his goal!!
Kathy
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