CIDP support..
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October 30, 2008 at 1:08 pm
My 5 year old son, Devin, was diagnosed with CIDP in Feb. 2007. It was a tough road as they originally told us he had ALD. He relapses every 4-8 weeks between IVIG treatments. I have gone through every emotion imaginable and now feel i need someone to talk to who understands. It seems people just don’t understand, and to top it off…the Dr’s think it might be something more…that maybe CIDP is more of a symptom than a diagnosis. I am scared, and really need some sort of support group.
Even the local hospitals have no support groups, which is very surprising. He really is not recovering that well between treatments any longer…so I fear the IVIG is not working as well as it once did….
Any response is greatly appreciated. by the way..I’m in Cali…
My son and I thank you in advance.
Linda
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October 30, 2008 at 1:53 pm
Welcome to the group! Sorry you had to come but now that you are here Welcome!!!Feel free to ask any questions that you have. There is always someone here to give you their opinion or share their experience. The kids that are here hold a special place in our hearts. We know what its like as adults to go thru this but it has to be such a challenge for kids. CIDP is rare so there aren’t that many groups like other diseases. Did you sign up with the foundation to get a packet of inforation. There is a listing of groups in that.
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October 30, 2008 at 2:25 pm
Linda, welcome.
I am so sorry you have to be here but you have found an excellent support group. I dont know where I’d be without all these folks here.
There are other moms on here that are very knowlegable and very helpful. I dont know how often this “child” section is looked at and you may want to post under the CIDP.
As Jan said, the children here hold a special place in our hearts and as an adult having CIDP, I couldnt imagine my son with it.
Kelly and Dawn Kevies Mom will be along soon and offer you so much info…not to mention new friendship.
Hang in there and check back often. You’ve come to the right place.
Stacey
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October 30, 2008 at 4:32 pm
Thank you to both responses. Yes, it is hard. Devin is such a trooper and it’s hard to imagine that a hospital is a very normal place for him now. Since he could remember, he has had “pokes” and that is the worst part (a port has been placed because the treatments are so frequent now.) His spirits are high each time….but mine are sinking lower each time. I just can’t show it to anyone.
The hard part is just not knowing exactly what this is….they now say there is an underlying myopathy which could be causing the CIDP symptoms…it’s very hard. The anger, the fear…I have all sorts of emotions that seem to be occupying my mind, and they simply won’t allow anything else to reside there.
Thanks to all….I will certainly be on here…I would love someone to even talk with who has a child in this situation, The hospital trips make it hard to keep a full time job, and I am always arranging something for him…so finances are an issue also….it’s a twister of emotional chaos. A friendly voice can make all the difference.
Thank you…to both of you. 🙂
Linda
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October 30, 2008 at 5:11 pm
Hi Linda!
My soon to be 12 year old was dx when he was 10. It has been quite a rollercoaster ride. I will private message you my phone #, would be happy to talk. Since you are in CA., there is a clinic in Arizona that is run by a doc that is on the board here. Call, I would be happy to lend you an understanding ear.
Dawn Kevies mom -
November 19, 2008 at 11:51 pm
Hey Linda, My son was diagnosed in july 06, on his 5th bday. We are in the hospital now getting a treatment. He is having problems with his veins burning really bad. This started about four treatments ago. We have stopped the treatment ten minutes after it started. They have medicated him to sleep. We will see.
It is so frustrating. I did not come back for eight weeks trying to get his veins to heal. His dr says it is just Mason, he has always been a difficult patient. Mason hates needles, he will cry and panic. Dr Maertens calls him a brat for acting like this. I wish I knew Dr Maertens biggest fear, I would throw it in his face and let him see how it feels. Dr Maertens says he is going to stop the IVIG treatments and do something else.
Mason had started getting weak and tired. He still has the bad Migranes. I am not sure what the solution is, I just know we need one fast. I pulled up the forum and tried to get the dr on call to read about the burning veins, he would not. Soooo we will see.
I hope things are better for you, hopefully you will not have these problems.
Good Luck, and we will be praying for you. Trish
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