My son has CIDP and is 5yrs old
AnonymousAugust 8, 2006 at 10:24 am
My son was at USA in Mobile Alabama, for two weeks. He was diagnosed with CIDP. He had a spinal tap wed, IVIG thur, and a nerve biop. fri. This morning he has started having the headaches again. This is the first time I have found any information with kids his age. Someone please help me!!!
Today Mason woke up saying his head hurt really bad. I had to get him dressed and to the hospital for his first physical therepy treatment. He was sick with pain for an hour, after that he was fine. We stayed in town until lunch time, so I bought him a happy meal. Mason ate the whole meal. We were headed home, maybe a mile from the house he started screaming with head pains. I slammed on breaks got him out of the car just in time for him to vomit his lunch in the middle of the road. After that he says his head hurts just a little. Can anyone explain this to me??
AnonymousAugust 8, 2006 at 12:01 pm
Hi Trish, sorry to hear about your son having CIDP. Contact the foundation here on the main webpage and they will send you some great information. Also they can put you in touch with a local liason for support.
Also if you look in the GBS-Child section there has been a recent post there from another family. Also Ben’s Dad who posts in that section would probably be happy to help.
If there is anything I can do, I am an adult CIDP’er and a liason here in Ann Arbor, let me know and I would be happy to, my email is [EMAIL=”email@example.com”]firstname.lastname@example.org[/EMAIL]
AnonymousAugust 12, 2006 at 9:02 pm
It has taken me two weeks to figure out this forum. I feel like a have been walking in a bad dream. It has been three weeks since we were told that he has CIDP. They are 80% sure Mason has. Dr was suppose to call yesterday with the test results from the biopsy. The not knowing is the hardest. I went thru this in 1995. I was 4 months pregnant. You know the wonderful Ultra sound, when you can tell if it is a boy or a girl. The told me something was wrong with my baby. I carried him 8 months. They did test after test. Week after week. Again, the not knowing. My baby lived four hours. It was the hardest thing I have had to do. I know I sound mad, I sound mad to me. I am trying not feel anything. I am scared if I feel or get to upset I will miss something important. Sorry I am not trying to babble. I am just trying to learn information from everyone, I have learned more from here, than any doctor has told me. Thank you all 🙂
AnonymousAugust 14, 2006 at 11:04 am
Thanks, I have a million questions. How often did or does he get sick? Does he live a normal life? How do you sleep at night? How do I know if I am doing the right thing? If the doctors and nurses don’t know enough about this, how do they know when to treat and what to treat him with?
He was fine all weekend. He got up this morning got ready for school. He was watching tv and he got a bad headache. I had to put hom to bed. It is 11 am he is still in the bed.
AnonymousAugust 16, 2006 at 5:19 pm
We must live within 1 hour of eachother.
Our son is 2. He is seen by Dr. Maertens at USA. Write me at [email]email@example.com[/email] and we can discuss things.
I really would like to get with you. I THINK I know alot about CIDP, but I guess it’s just basically my son’s problems that I know. He was dx. at 19 months but has had it since 5-8 months old.
AnonymousOctober 31, 2006 at 11:06 am
My name is Julie. I’ve been dignosed with CIDP for five years. My 10 year old daughter displays many symptoms of CIDP, but we have not taken her in to be dignosed yet. We make sure she gets tons of rest etc.
My mother and grandmother seemed to display many of the symtpoms as well. Not to mention my great grandmother was in a wheel chair, but the doctors at that time could not figure out what was wrong. Needless to say, I belive there is a genetic link in the female members of our family.
My daughter cries and says it feels as though Satan himself is pushing pins in her spine. It kills us…then the next day she is back to normal. We’re probably experiencing some deniel.LIfe is so hard. I completley understand your broken heart and desire to bless your son.
Let me address your question about headaches. Migraines seem to be very typical for someone with this disease. I never experienced them prior to CIDP. Now, I must fight them constantly. I am sensitive to light, noise, movement and feel nauseua quite often.
The good news is there are preventative mediations a person can take that truly make a BIG difference. I’ve taken a lot of medications, but I find Nortriptyline the best overall. I take 40 to 50 mgs at bedtime. When I cut down even a little, I experience a migraine the next day. For sudden attacks, I find Imitrex works the best (especially for the nauseau).
Also, I tried I.V.I.G. several times, but it didn’t work for me. It made my liver enzymes sky rocket. Plasma pheresis was the important key for me. I”ve had 106 of them. I’m doing better now. I’m not receiving PE any longer, just taking Cellcept (auto immune suppressant) and resting constantly (it gets very borring).
You sound like a wonderful mother. I belive your son will get better, stronger, everyday. If you ever need another mom to talk with who truly understands, please email or call me at (916) 988-1110. We’re in California, so we’re three hours behind everyone else in the country. Call anytime.
God Bless You,
AnonymousNovember 1, 2006 at 9:08 am
I can certainly sympathize with you about having a sick child. I have an 8 year old who has been sick for about a year and a half, we almost lost him. Read some of my other posts. He is yet to be diagnosed with anything as of yet. Test after test and nothing conclusive. they are presuming it may be mitochondrial because there was one test on his muscle that showed some chemical makeup that was so slight but could possibly be mito. One doctor and I say CIDP for many reasons but I am told that even though he had an EMG his nerve concution was zero at one time that it is how the nerve is blocked that says not CIDP and that he has also had nerve damage that causes him to be deaf??? In my research I have found many disease have very similar symptoms and if just one is different the docs say it can’t be that. I wish you luck and keep researching and getting answers. this website has helped me allot and everyone is very knowledgeable and supportive.
AnonymousDecember 12, 2006 at 11:20 pm
Hi Trish, I have an 8 year old son that was diagnosed with CIDP when he was 6, he has had 19 treatments of the ivig, yes he gets headaches, we just make sure he is hydrated, we have also found a tylenol suppository, it really helps alot, we make sure he get the tylenol every 6 hours. It doesn’t upset his stomache like motrin does. Please let me know if you have any quetions, hopefully I can answer them
AnonymousDecember 16, 2006 at 9:19 am
Thanks for the help. Where his headaches like MIgrane headaches? Where did you get the suppository? I am giving him tylenol with cod. His checks and ears turn red, he is screaming his head hurts. He usually has to lay down for a while. The Dr upped his IVIG to 32g at 100 per hr for 6hrs. We have never gone that fast. It has not gone well since. He was itching real bad, all his symptoms have come back. Headaches and stomach pain is worse. I don’t know if it is from the IVIG, Hashimoto, or CIDP.
AnonymousDecember 28, 2006 at 7:07 pm
My husband got them from Walgreens, they really help the headaches, he still gets them but not as bad and he doesnt throw up as often. Yes they are just like migranes. I am not sure what brand of IVig your son is getting, we changes to the brand flebogamma, he seams to have less side effects. My son cannot take gammar gobulin, it takes to long because it is so thick, the flebo only take 2 1/2 to 3 hours. My son gets his 20th tx next week, he has been doing much better this winter, that is when it seams to not last as long.
Keep me informed let me know if you would like to email me.
AnonymousFebruary 26, 2007 at 10:56 am
[FONT=”Comic Sans MS”][COLOR=”Navy”]:) Hi, my son is 7yrs old now and we have been battling CIDP since he was 3 yrs old. I would love to talk to you. I have not found a child that has similar characteristics and it does feel like your alone with this. We have traveled to Rochester, Minnesota to Mayo Clinic several times. We are located in Florida. Health Care here is very sad! Now it is showing up in his foot. His left arm is paralyzed now. It has to be the most difficult thing I have ever endured, to watch my son lose the use of one finger at a time and not be able to do anything about it. Hunter had really bad headaches and still does occasionally. Did he get sick the day after IVIG? Hunter still does sometimes.
If you would like to talk—-my phone #239-543-2146
or email [email]firstname.lastname@example.org[/email]
It would really be nice to find someone to talk to. there are no support groups here and the dr’s just tell me GOOD LUCK, nice huh?
My name is Robin[/COLOR][/FONT][/COLOR]
February 26, 2007 at 11:42 am
I just read your post, my son has cidp or aidp, they are not sure yet. We are going for another ncv/emg tommorrow. I have tons of questions too, maybe I can answer some of yours and you mine?! Please call/write. (we were dx 5 mo. ago.)
You must be logged in to reply to this topic.