CIDP support..for children
AnonymousOctober 30, 2008 at 4:54 pm
Yes…I know this is an adult CIDP thread, but I need help…and hopefully, some answers….
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 don’t know how long this will be with him, if not forever,… how much worse it can get, or if it’s even the correct Dx. 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.
AnonymousOctober 30, 2008 at 5:13 pm
I’m so sorry you are going through this – we do understand here, there are some wonderful parents on here who will chime in when they see your message. My message is – don’t give up hope, this is a complex disease and seems to effect people differently. Most doctors do not know much, if anything, about the disease and there has been little research done to provide more information. This is a great support group here and likely the only one you will find as this is a rare disease. Some questions that immediately come to mind are:
1) How often is Devin getting IVIg?
2) How long after he gets IVIg does he experience symptoms?
3) What dose is he getting? 1g/kg is maintenance; whereas 2g/kg is loading.
Are there particular symptoms you are concerned about? Many of us here have ‘atypical’ symptoms (according to our doctors) but are not all that atypical for the population of this forum. Voicing your fears may help us to reassure you and/or help you determine whether it is a relapse or just overdoing it.
Don’t panic – it took me a long time for things to get under control with IVIg and some times it seems to work better than others. I think some that depends on what else is going on, whether I’ve been exposed to people who were sick, am I trying to do too much etc. Try to keep track of things though, it helps when deciding whether Devin is getting IVIg often enough. I start experiencing symptoms between 15-20 days after my treatment so I get it every 21 days – not having any down time has allowed my peripheral nerves to heal a great deal and so my ‘relapses’ are not as extreme as they used to be.
Take care of yourself too…;)
October 30, 2008 at 5:19 pm
There are many things you can do to get better results. Don’t loose faith. I left you ny phone # in a private message located in the top right corner of the page. Just click on it. Looking forward to talking with you. Kind of last minute, but there is a symposium next week in Chicago and there will be many doctors there. A doctor Sladky also will be there, he deals w/peds cidp/gbs patients. If the dx is complicated as you indicate, have you considered mayo? I also left some info in your other post about a clinic in Arizona. Talk to you soon. Good luck.
Dawn Kevies mom
October 30, 2008 at 5:52 pm
I remembered something, when we were first seeing symptoms, we did a tests for Addison’s disease I think. If that was positive, I think I recall they test for ALD. Has your doc done any of the basic blood work to test the fatty acids? There is a specific blood test for ALD. If that IS confirmed, they scan the brain. I think I remember time being important (much like cidp) and there being a certain window to slow things. What diagnostic testing have they done to think cidp? There are so many questions, sorry. If is is cidp soleley, the fact that he is not improving w/ivig does not mean there is no hope. Children can actually get more than the standard 2g/kg for a dose. I have read 3 and KNOW that Emily had 4g or more in the beginning. Spacing also is critical. Kevin happens to get it every 30 days, others go weekly or bi-weekly. There is all kinds of tweaking necessary if things are not going well before you have to rule out ivig. Be patient. I guess the first order of busines would be a concrete blood test for ALD and go from there. Isn’t Ald affiliated with Lorenzo’s oil? Before I knew Kevin had cidp, we were told it was cmt, with no medicine to help or halt. I remember asking the doc if there was a Lorenzo’s oil available like in the movie, a true story of a boy with ALD. Prayers are sent your way while on this journey.
Dawn Kevies mom
AnonymousOctober 30, 2008 at 6:54 pm
🙂 I truly appreciate all of the support.
Devin was first Dx in Standford, they first said it was ALD…they did every test known. The one blood test you are referring to, to rule out ALD was taken and it was confirmed it is in fact, NOT ALD…however, after 2 years of this, the new dr’s at UCSF just don’t feel his symptoms are that of “textbook” CIDP…he has had 2 EMG’s, 2 MRI’s, 2 LP’s and a muscle biopsy.
He has NO pain…never has. His breathing/swallowing was not effected…even at his lowest point, when his fingers began to curl from paralysis. Walking was not possible yet he had no pain or tingling. Is that normal in CIDP?
As far as his treatments, they tell us, “when he relapses, bring him in”. He then gets 35 grams…(could be kilograms) over the course of 36 hours…well, I think that does more harm than good because of the damage each relapse cause his nerves. It seems that the specialists here (although very kind and open-minded) just don’t have any answers.
My ex wants to try the mayo clinic…but I am wondering what else can really be done…he has had every test known for this…..and others. I’ll call when I can….I appreciate the outreach….I really do.
AnonymousOctober 30, 2008 at 10:25 pm
Hang in there. Everyones experiences are soooo different. Dawn will definitely be a good support person for you because she is so wonderful with Kevin. Try to be a strong advocate for your son but also remember to take care of yourself. Good luck and Take care.
AnonymousOctober 30, 2008 at 10:30 pm
Hi Linda, Welcome to The Family. I’m sorry to hear Devin might have cidp. There are many variants of cidp, some have pain, some with little pain and some with no pain. I don’t have alot of pain as compared to others, but it does vary day to day, relapse to relapse and if I over do it or not. It sounds like Devin might need to have a loading dose of ivig and get repeat doses more frequently to stop the progression of symptoms and relapses. Don’t give up. Dawn and Emily’s mom or Dell’s mom can give you more information through their posts, just click on their names and read their past posts-they are experienced with the kids’ cidp and treatments etc. Its important to find an experienced neuro who knows cidp and kids well. Please feel free to ask as many questions as you have on here, there is soo much knowledge available to you on this site. Stay positive. Take care.
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