My 7yr old son & CIDP
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March 26, 2007 at 10:42 pm
[FONT=”Comic Sans MS”]:( Hello! I am a sad mom today. My son was diagnosed with CIDP about 2 years ago, after 1 1/2 yrs of searching for any doctor to take notice and do something. My son has been having infusions/ IVIG once a week for 2 years. his headaches are getting worse and his legs pain daily. They started him on neurotin, no difference. They just raised the dosage. We are from florida, but have traveled to other places, now we found a Dr. in Kansas that has several patient with CIDP. He is a neuromuscular specialist that specilizes in cidp. of course more adults than children. and interesting enough they said a lot of the patients also have MS in conjunction? My son Hunter, had an MRI last week, got a call today, they see a small lesion on the cerebellum :confused: now another MRI scheduled with contrast. My son has no flexion use of left hand/ wrist. his distal reflexes are not there. and also his distal reflex in his left ankle is diminished. not sure what im searching for here, but here i am. [QUOTE]These children are amazing! [/QUOTE] Hunter keeps me going when I feel like I cant listen to another dr brushing us off.
Thanks for reading,
Robin[/FONT] -
March 27, 2007 at 6:16 am
Robin, Yes it is hard and stressful to deal with this especially when you get thrown from one dr to the next. Can’t beleive there are no dr’s closer than Kansas. No one in Miami? Do hope that this next MRI shows something and that Hunter can start some treatments that will make him start to feel better. From what I’ve read on her the Neurotin takes awhile to get into your system and adjust hopefully it will begin to work soon. I wish you the best and do know you and Hunter are in our thoughts and prayers. Let us know how its going and keep your head up things will improve. My heart goes out to you, I know how stressful all this can be . Take care and try to stay strong. 🙂
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March 27, 2007 at 6:42 am
hi robin,
how much neurontin is he now taking? how much was he taking? is he in less pain now? how much pain is he presently in? take care. be well.
gene gbs 8-99
in numbers there is strength -
April 4, 2007 at 2:52 pm
Robin,
How often are his headaches? What meds for the headaches? How far are you from ALabama? We see a Dr at USA. We also saw a Dr at Emry in Atlanta.
Trish
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April 5, 2007 at 1:43 am
[FONT=”Comic Sans MS”]The doctors started him on 100mg of neurotin and now after 30 days they raised him to 200mg/day. His headaches are coming just about everyday. His legs hurt also just about every day.
Some days worse than others. We have been to All Childrens in Tampa with 2 crazy diagnosis, to Ft. Myers with another diagnosis, went to Schriners and waited 3 months for appt to be told I needed to leave well enough alone and quit putting my son through so much trauma, and went to Miami to wait 1 1/2 hours for a neuro surg. to tell me to tell him real quick about Hunter. So we called Mayo Clinic in Jacksonville, but they do not have a children unit so we ended up in Rochester MN, and that is where he had a nerve biopsy and was diagnosed with CIDP/CIDM. Health care really stinks here in florida if you dont have the common cold. My sons pediatrician shook my hand and told me GOOD-LUCK! Nice huh! Well he had another MRI today, so I’ll let ya know the outcome. Thanks for writing, its nice to have a place to come to.
Robin[/FONT] -
April 5, 2007 at 1:48 am
Trish, did you see a Dr. Lactov at Emory? I have heard of Emory, Where do you go in Alabama? feel free to email me at [email]capturethememory@hughes.net[/email]
I am very interested in your experience. Is that a picture of your son? Hes cute! Does he have CIDP? Thank you, Robin -
April 5, 2007 at 8:40 am
hi robin,
so now that he has been Dxed w cidp what are they Rxing for him? it should be ivig, not steroids. 200mg of neurontin is way too little. makes me wonder who you are seeing. take care. be well.
gene gbs 8-99
in numbers there is strength -
April 6, 2007 at 2:07 pm
Hi there –
My daughter, Emily, was dx’d with CIDP in 2006 at 4 years old. She was first dx’d with GBS in Dec 05. She received IVIG 2 & 3 times a week for quite a few months and now is down to IVIG 1 time a week. We’re hoping to move her to once every 10 days soon.
If your son has been on IVIG for 1 1/2 years and is still in so much pain have the dr’s mentioned giving him anything in addition to the IVIG? Emily was put on oral Prednisone (it didn’t help her at all but it does help some people) and Methotrexate was also suggested to us (I don’t think we need to go there just yet). My point is that there are other treatments available that may be able to give him the push that he needs to start to recover better.
His headaches could be from the IVIG if he isn’t staying hydrated. Emily gets headaches & stomach aches if she doesn’t drink enough. Since they get IVIG so often they have to be constantly hydrated. It’s hard to do, I know. It’s a constant battle here.
For a closer dr have you tried to find a local MDA (Muscular Dystrophy Association) clinic? We switched to a dr out of one for a few months but then switched back because it was impossible to reach her. But they do know more about CIDP than the average neuro does.
Remember that children fare better against CIDP than adults do. Most kids will go into remission eventually. Remission is acheived when the disease is no longer active & the myelin has been restored. It takes time but kids can & do get there. You just have to figure out the best course of treatment for them.
Just out of curiosity how old is your son?
I hope you get some answers soon. Let us know what that MRI shows.
Good luck,
Kelly -
April 6, 2007 at 7:01 pm
H[COLOR=”Navy”][/COLOR]HI GENE, Hunter is getting 12 (is it grams?) of IVIG every week. He is not on any steroids. We are going to a specialist at the end of this month in Kansas. Hopefully, he’ll help us.
Thanks for the feedback,
Robin -
April 6, 2007 at 7:11 pm
Hi Kelly, Hunter is 7 yrs old. Your actually the first one that also is having the IVIG every week. What is their reasoning for every week? For Hunter, they say that there is soooo much damage to the nerve that they are trying to help it along. They say its tooo soon to know if its working. They have not decided to add anything to his tx. but mabie this other dr. will help. Have you heard of Rituxan sp? I have heard of other people with cidp that it has helped. I have not thought about an MDA clinic, but I bet that would be a better choice verses a reg. neuro. I’ll check into it.
I am very sorry to hear your daughters story. I know what a struggle it can be when your child needs help and you cant do anything. Does your daughter have any permanent damage? My sons left arm is paralyzed now.
I appreciate you sharing and giving me feedback.
Thank You,
Robin
We will keep your daughter and family in our prayers. -
April 7, 2007 at 10:55 am
Hi Robin –
We’re very lucky in that Emily looks like a perfectly normal child. She can run, jump, play & do all the things that the other kids can do. Her EMG shows slowed nerve conduction but she has been improving slowly. Her problem is that her right eye becomes paralyzed if she does not receive IVIG. Her eye was paralyzed for 5 months at the beginning of her disease & when she had her first relapse she was put on an extremely high dose of IVIG that improved her eye.
We found a schedule of IVIG 2 times a week for 4 weeks then IVIG 3 times a week for 2 weeks and then repeating the cycle worked best for her. We figured that out in August & she was on that schedule until November when we switched neuros. That neuro decided to try oral Prednisone after taking Emily completely off of the IVIG. She relapsed after 12 days, which we thought was amazing since in the beginning she had to have IVIG twice a week. The Prednisone actually made Emily worse and we lost 3 days when she was on her highest dose of 20 mg’s every other day & 17.5 mg’s on the off days. We ended up switching back to our old neuro, weaning her off of the steroids & putting her back on IVIG 1 time a week.
Emily has atypical CIDP because her eye is affected. It is very rare & most dr’s don’t know what to do about it. If she is off of her IVIG for 2 weeks after her eye relapses then she starts to complain of pain in her feet. As long as we can keep her eye healthy then everything else is fine. There is some evidence that doing plasmapheresis works but I’m not putting a 5 year old through that. I’m surprised that the dr’s haven’t suggest it for your son if his nerves are damaged so badly. I don’t know if I would go through it though. It would definetly be something you would have to think about & research thoroughly.
I don’t think that Rituxan is a good idea for your kids. Methotrexate was suggested for Emily but I declined that. It might be something that you want to look into instead.
Has he been tested for other diseases like Myasthenia Gravis or Charcot Marie Tooth? Emily just went through those tests & everything came out negative. Her regular neuro didn’t do them but the MDA dr did.
How much does your son weigh? It seems to me like 12 g’s of IVIG isn’t nearly enough for a 7 year old. Emily is 5, weighs about 47 lbs & gets 20 grams. Has your son improved at all since his original diagnosis? When Emily was first admitted to the hospital she could hardly walk, couldn’t lift her arms up or open her fingers (they were in little fists). After her 2nd IVIG treatment she was running, jumping & climbing.
Does your neuro order blood tests every month to check his liver & kidney functions along with CBC? I know that there is a concern with developing blood clots from IVIG so we are monitoring that closely with Emily. I’m told that is what the liver function tests are for.
There is 1 other mom who’s 2 year old just did IVIG 1 time a week for a month. They went down to IVIG 1 time every 9-10 days last week, I think it was. There are some adults who have received it 2 times every 2 weeks too.
Geez, I’m long winded today. I better stop here before I get the longest post award, LOL.
Let me know if there’s anything that I can help you with.
Kelly
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April 7, 2007 at 7:43 pm
What i recommend is and what works for us.
1. We go to Johns hopkins, baltimore md. for his child neurologist.
2. he gets his ivig treatments every 5 weeks (we have increased from 3 weeks) at a clinic that has a pharmast on hand that works with me.
3. I premedicate for the ivig with tylenol and benedryl.
4. I make sure his dosage is slower than what they recommend. It helps keep the headaches not so severe.
5. He gets 1 gram per kilo.If you go to johns hopkins, talk with a social worker there and get refered to the ronald mcdonald house. We came here 3 times and could not get in (150/night local motel). We now can self refer and have been so blessed to get a room.
He does not seem any worse. He has days that i get so scared. It can consume your life. I also get the ivig magazine. It helps to read about different things. I also started keeping a journal.
if you have any other questions feel free to contact me. Joey has his appointment on monday. we are in baltimore right now. I hope our new is good this time. It is scary when this disease has no indicators. I wish there was a test he can take to see how he is doing. It is so difficult when it is not your body and you are just guessing.
Take care,
Michele -
April 13, 2007 at 12:37 am
Hi Kelly,
I appreciate you sharing all the information. Where do you go and who does your daughter see?
My son, Hunter weighs 52 pounds. Before the IVIG he couldn’t play for more than 10-15 minutes without taking a rest. His pain was really bad, waking him up during the night, he complained of his legs the worst. Soon after the IVIG was started the pain improved (didn’t go away) and he could keep up playing with the other kids. They said the EMG showed some improvement, but nothing you could physically see.I was very interested in reading about Emily’s eye. Hunters left eye turns in, 2 seperate eye doctors put him in glasses that he could not even see out of, they said it would train the muscle, but He would not keep them on. Depth perception off, blurry, who could blame him.. recently I took him to a 3rd eye doctor and she says its like a switch/ flips in then flips out. She said its like the nerve just stops working then starts again. She said his vision is good in both eyes individually, but the brain isn’t telling them to work together. He couldn’t see these shapes on one of the test that I could, and she explained that both eyes have to work together to see them and his are not. Not sure what all this means. His eye has not always done that. Everything seems to be left sided on him. Left eye, Left arm, Left ankle, Left toes. The pain goes to both sides, but I don’t feel his dexterity is very good on the right, but nothing you can measure. His handwriting is getting worse. He’ll be eight in August and still can’t ride a bike. His younger brother has been riding a bike since he was three. We went to a physical therapy eval today, they want him to have a occupational eval. He has had so many test and just about all the test have been negative.
They have tested his blood, but not every month, he goes tomorrow for IVIG i will request them to test. THANKS!!!
WOW!! 20mg They had said he was only suppose to be getting 8mg, but the pharmacist said it comes in 6mg, so instead of wasting 4 mg they either needed to lower him or take him up to 12, they chose to up it.
We are suppose to be seeing a neuromuscular specialist that specializes in CIDP, in Kansas. We see him April 24, were flying up there April 21st, getting anxious to see what he has to say, cuz no one around here is familiar with the disease, not even the neuro’s.
He had a 2nd MRI on his head with contrast, the lesion is still there, but no enhancement, very small, circular, no irregularities, dark. (in the cerebellum) Not sure what it is, something else were just gonna watch. thats always the story… wait….watch…WATCH WHAT!! Watch him get worse. I am so tired of doctors, I can tell immedialtely if the’re just blowing smoke at me.
Well look here, now who’s getting long winded! LOL!
Anytime you would like to talk, feel free to call 239-543-2146
Again thanks for writing, its nice to know there are other people out there going through similar situations, even though I wish this disease never existed
Thanks
Robin -
April 13, 2007 at 12:45 am
Hi Michele,
I called John Hopkins and they told me they see cancer patients, because a nurse here rec. to me to go there. They sent me referels of other doctors.I hope you got good news at the doctors.
I would like to hear more about your son, if you would like to share.
feel free to contact me as well,
thank you for writing, I was a little worried about doing this, not sure if anyone would respond. Everyone has been wonderful.
Take Care,
Robin -
April 13, 2007 at 9:57 am
Robin,
I have read your posts with great interest. We have gone to New Orleans twice, Birmingham, AL twice (told he had a disease that he would die from at 5 years old) and finally found someone who knew what he was talking about in the little old town of Mobile, AL (who would have guessed).
Our almost 3 year old contracted CIDP at the age of 5-8 months. He is on an experimental (experimental for us) of 4 grams per kg ivig monthly. He has improved but not to where I want him and where he should be. We are blessed that he has no pain.
He cruises around furniture and can walk with a old person’s walker. He does not grow like a normal 3 year old. He’s 22 lbs.
I have your phone number from a post and will probably call you today. I did call a dr. in Miami at University of Miami. Can’t remember name off hand but he’s retired but still sees interesting cases. I think he wanted to see Dell but we did not go. We instead went to the only neuro muscular pediatric dr. at John Hopkins, Thomas Crawford.
Lori
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