Question on CIDP in 4 year old
AnonymousMay 9, 2006 at 9:36 am
Hi everyone! Glad to see that this site it back up & working.
I posted on the site before about my 4 year old daughter. She was dx’d with GBS in December and had success with IVIG. In April she had a relapse & was re-dx’d with CIDP. She had 5 consecutive days of IVIG in the hospital, then IVIG every other day & now twice a week at home. The plan is to go down to once a week treatments then once every other week. That’s all that I know so far.
I’m wondering when she should stop getting the IVIG. I mean, at what point do we see if the CIDP is gone? The home care nurse says that she should be treated every 4 weeks or so for 2 days in a row for the next 6 months to 1 year but the neuro hasn’t mentioned that to me. He’s not the greatest communicator, so maybe he just plans on telling me at a later time. We are seeing him tomorrow and I plan on talking to him about it but I wanted other’s input first.
Also, I believe that my daughter has a stomach bacteria of some kind. I’ve been doing some research & a study was emailed to me about people with CIDP having H.Pylori. I was wondering if anyone else has experience with that. I’m taking Emily to the pediatrician today so he can order those blood tests.
Thank you in advance. I can’t tell you how relieved I am that this site is back up. I was going insane trying to find answers a few weeks ago. Luckily, I met up with Jerimy on another site & he was able to help me. So a HUGE thanks to Jerimy.
(mom to Emily)
AnonymousMay 9, 2006 at 10:24 am
good information about CIDP, including treatments, is to be read at this UK site. [URL=”http://www.gbs.org.uk/info/cidp.pdf”]http://www.gbs.org.uk/info/cidp.pdf[/URL] As you see that’s the pdf version with IViG on page 8.
The html version is at [URL=”http://www.gbs.org.uk/info/cidp.htm”]http://www.gbs.org.uk/info/cidp.htm[/URL]
Hope that helps.:p
AnonymousMay 9, 2006 at 11:10 am
I think I remember you telling us about how the blankets hurt Emily when you put them on her, along with a whole lot of other things. Im sure yours was the post I read and just cried and cried. While I’m afraid I can’t give any advice or suggestions, just wanted to let you know that you have, and will remain, in my thoughts and prayers. Please keep us updated.:)
AnonymousMay 9, 2006 at 11:25 am
first of all one relapse does not mean cidp, it can be chronic gbs – a big difference. all this ivig is taking the most conservative road, not that it can necessarily hurt her. if she really has chronic gbs then 1 five series of ivig would do. if it turns out she does have cidp, the ivig should be taperd off till she shows signs of relapse, then you will know her border line requiremnet of ivig. the numbers the nurse gave you are what often happens. get to the bottom of this stomach prob. don’t let the docs shine you on. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousMay 9, 2006 at 4:54 pm
The possibility of CIDP healing is not an easy wait. It takes such a long time for the nerves to heal. It depends on how much nerve damage that has been done to her body too. This is one of those illnesses that can take years to heal. I know you don’t want to hear that, but frustration isn’t easy when dealing with this syndrome. I would like to hope and pray that Emily has a faster recovery then what is the norm for CIDP.
Take care of that beautiful girl.:)
AnonymousMay 19, 2006 at 3:04 am
Hi Emily’s Mom,
I’m Ben’s dad. He is an energetic 4 y/o with CIDP receiving IVIg 0.4-0.5grams/kg x 1 monthly. He’s had this since he was 3 and ran what sounds like a similar course to Emily. We are looking forward to the next two years of staying the course with his monthly treatment until we begin tapering (actually increasing the interval from 4 weeks to 5). And who knows what happens then. I think 4 week intervals are most common with infusions and 1-2 days per month (at 0.4-0.5grams/kg) seem to run the average. I can appreciate the difficulties with each IV stick (ouch!!) and time spent with each infusion. Stretching them out a bit would sure be helpfull to all concerned. We are at what seems like the minimum dose at the longest interval to be nerve pain-free (pain likely correlates with nerve damage). And Ben’s function returned to about 85-90%, but still lacks deep tendon reflexes (which may never return) and still suffers from slight foot drop (which will hopefully improve with time and exercise). Keep us in mind as a resource and stay strong. You’ll be in our thoughts. Sinc/Neil and Doris Bulich
AnonymousMay 19, 2006 at 2:36 pm
Your welcome 🙂 contact me anytime.
As for the IVIG it’s hard to say when the treatments will stop if ever. They will first try and keep spacing them out farther and farther until they find the maximum time she can go between them. I think I read that the half-life of IVIG is 21 days or something like that so 42 days is the theoretical max.
I am really not sure about the treatments stopping, My Dr seems to think it’s a forever thing for me but that just might be my case.
Tell Emily hello for me and you guys take care.
You must be logged in to reply to this topic.