Reply To: 7 year old female with CIDP

Anonymous
July 14, 2008 at 3:32 am

Hi Holly.

My daughter Emily was dx’d with CIDP at 4 years old. She’s 6 & has been relapse free for 17 months now! (KNOCK ON WOOD!) Currently she gets 20 grams of IVIG every 3 weeks & is 53 lbs.

Just to let you know I have been through the wringer with Emily & her treatments, so I know exactly what you are feeling right now. Emily is a really unusual case & has received more IVIG than anyone I have ever heard of. She was getting 200 grams a month at one point. That was the start of better things to come though – it really helped her out a lot.

I hope knowing a bit about what we have gone through helps you to not feel so alone. When Emily got sick there weren’t many parents on this board at all. I felt really alone at times – although the adults with CIDP have been super supportive as well. It just helps to talk with other moms, I think.

After reading your posts & speaking with Dawn (she called to tell me to respond to you), I think your daughter needs more IVIG & more often. At this point I would recommend following what we did with Emily. Her loading doses are 20 grams every day for 5 days. This floods the system with anti-bodies much faster. It sounds like Hailey really needs to be hit hard with IVIG to stop the attack on her myelin.

Just for the record, Dawn & I disagree a bit with this protocol. We still agree that a loading dose is 2 grams per kg though. I just think it needs to be per day & not broken up over 4-5 days.

Emily has seen 3 dr’s who all follow this protocol for a loading dose (her neuro, an MDA dr neuro & a pediatric physiotherapist. And the director of the hospital she was at agreed to it as well). And just to be sure I wasn’t crazy I called Emily’s infusion nurse tonight & checked with her on this. She said that most of her patients get the same protocol that Emily does. And then just to verify that info I called my dad (who is the administrator of a nursing home) and had him call around. He got in touch with a dr & his director of nursing & they both agreed with it as well. So I’m not crazy & this protocol is followed on a regular basis here. It’s not often that Dawn & I disagree on anything to do with CIDP or IVIG. I think it’s just different for each patient & each dr.

Following this protocol would mean that Hailey would get the 2g per kg every single day over 4-5 days. I think Dawn said she gets 45 grams over 4 days every month. Doing this would mean that she would get 45 grams every day for 4-5 days for a loading dose. Then you would need to figure out her relapsing pattern & adjust the dosing amount & time frame to that.

Blood tests should be done a regular basis to check her iron, kidneys, etc. Make sure that she gets pre-medicated with Benadryl & either Tylenol or Motrin. And she needs to be really well hydrated, so she’ll need to drink LOTS of water & Gatorade. Popsicles count as a liquid too 😉

I hope all of that made sense. I know how overwhelming this can get.

You said that the dr from Germany suggested that they get aggressive in treating her CIDP & I agree with him. I think aggressive IVIG dosing is the way to start. If that doesn’t work then you start looking into steroids & things like Cellcept. I’m actually quite surprised they are doing PP on a 7 year old.

I’ve read a few studies that say if you can get the attack under control within 2-3 years after onset then you have a better chance of her going into remission. I also read another study which followed 15 (or 16) children with CIDP. 10 years later all but 2 of them were symptom & disease free. The other 2 were disease free but still had a little bit of disability – not much though, it was classified as “slight”. None have received any treatments in the last 10 years. They all went into a remission.

Do you know how long after Hailey’s last treatment she started having symptoms again? If not, you need to keep a detailed record of this. Most of us CIDP mom’s keep a big binder with all of the test results, nurses notes, presciptions, etc in it. It’s also a good idea to keep a calender or journal to record how she is doing day by day. Not only is it good to show the dr’s but it also will help you to assess her on a long term basis.

In the beginning I would do a standard neuro evaluation on Emily every day. That would include walking on her tip toes & heals across the room, jumping up & down 10 times on 1 foot, sitting on the floor with her legs crossed & getting back up as quickly as possible, having her squeeze my pointer finger with each hand and having her follow my finger with her eyes. Now I have her do push ups for me, LOL.

Did Hailey get any immunizations recently or was she sick at all before being diagnosed with CIDP? I’m just wondering.

Let me know if you want to talk on the phone or if there’s anything I can do for you. Remember that we’re here if you need us. We’ve all been where you are now so we’re very understanding of what you are going through. If you need to vent or cry or share good news, we’ll be here.

Good luck,
Kelly

PS, Google, Google & more Google. You’ll be able to find studies to read & you’ll learn SO much that way. That’s how I learned everything & now I know more about this disease than Emily’s dr does, LOL.