Reply To: 7 year old female with CIDP

Warning…this is LONG.

Like Dawn said – I’m just a mom & this is what worked for my child. I re-read what I wrote (at 3:30am!) and I talked with Dawn this morning & I want to make sure that you look into what I said before doing it. I’d hate to give you bad info or tell you to do something that wasn’t safe. Also note that Emily has a very rare case of CIDP, she has right eye involvement. Something like only 3 % of CIDP’ers have this.

Where I live & the people who treat my daughter do the loading doses like I told you last night (this morning). I’m trying to look for info online about it but I’m not having much luck. Most sites do say do the .4 g a day for 5 days. Obviously that isn’t working for your daughter though. Maybe do 45 grams once a week or once every 2 weeks. I dunno…

The whole point of a loading dose is to flood the system with good anti-bodies then you can find a maintenance schedule that works for you. I guess that’s why we do such a heavy duty loading dose.

All I can say is that dosing Emily the way that we did with IVIG was the only thing that helped her come around. After that 2 month flood of good anti-bodies she went from relapsing constantly to being able to go 12 days without a treatment. It was risky but I would do it again in a heartbeat if I had to, especially seeing where she is now.

I’m going to attempt to get a hold of Emily’s nurse again today to discuss the loading doses – just to make sure that I’m not giving out bad info. I do know that another one of her patients, a child with another auto-immune disease, gets 45 grams a day for 5 days as a loading dose. She’s 10 years old & about 70 lbs.

Just a bit of a background on IVIG…I pulled out my big binder & I’m going to go through what Emily has received.

Emily was originally dx’d with GBS on Dec 28th 2005. She was given 2 consecutive days of 20 grams of IVIG then released. By the end of the 2nd treatment she was back to walking, running, lifting her arms, she could jump & climb once again. Her eye wasn’t back to normal but it was stuck in the middle.

When we saw her neuro for follow up he decided to give her 20 grams of IVIG 1 time a week for 3 weeks because of her eye. We also saw a pediatric eye dr who told us that her eye would get better with time & to put a patch on the good eye, to make the bad eye work harder.

Emily relapsed in March 2006. Her eye had gotten worse & was stuck in the corner of her eye & she started tripping. She was admitted to the hospital, had another spinal tap & was dx’d with CIDP.

This is what her IVIG schedule was like at that point:

In the hospital:
20 grams of IVIG every day for 5 consecutive days.

Through home care: (note all IVIG infusions after this point are done at home)
20 grams of IVIG 3 times a week for 2 weeks
20 grams of IVIG 2 times a week for 2 weeks
20 grams of IVIG 1 time a week for 2 weeks

After her 2nd dose of IVIG during that 3rd week her eye had returned to normal. Then she relapsed after the 1st week of 1 time a week.

We then did 20 grams of IVIG 3 times a week for 1 week & then went back to 20 grams of IVIG 2 times. She got 20 grams of IVIG 2 times a week for 8 weeks then relapsed again. Then I came up with this schedule:

20 grams of IVIG 2 times a week for 4 weeks
20 grams of IVIG 3 times a week for 2 weeks
20 grams of IVIG 2 times a week for 4 weeks
20 grams of IVIG 3 times a week for 2 weeks

We started this in August 2006 but after the 2nd week she had a central line infection (she had a Broviac catheter). She was in the hospital & taken off of all IVIG & given anti-biotics. Her central line was removed & she went 5 days before she relapsed again. On August 31st she had a port put in & started with another loading dose of 20 grams a day for 5 days.

Then we started the above schedule on Sept 11th 2006 & we did this through November. In December 2006 we switched neuro’s & she was taken off of all IVIG, to see what would happen. Emily went 12 days before we noticed the start of a relapse. She didn’t get really bad for 15 days after that. She received 20 grams of IVIG 1 time, on December 23rd & it had no effect what so ever. At this point the dr talked me in to doing oral Prednisone. Emily was put on 5 mg’s a day & there was no improvement.

In early Jan 2007 she had another loading dose of 20 grams per day every other day for 5 doses. This is the protocol that they use at Children’s Hospital in Detroit, MI. I was told that in females they want to do it every other day & in males they can do it every day…not sure why though.

We noticed a dramatic improvement after the 3rd dose – by the 5th she was back to normal. The new dr then decided that she would only get 20 grams of IVIG every 4 weeks, Emily lasted 12 days then relapsed again. Once again she got a loading dose of 20 grams of IVIG every other day for 5 doses & her steroids were increased to 15 mg’s a day.

After 12 days, once again Emily relapsed. She had yet another loading dose of 20 grams of IVIG every other day for 5 doses & the steroids were increased to alternating 17.5 mg’s a day & 15 mg’s a day. After only 9 days on this new protocol she relapsed. I had enough at this point & the neuro was insisting we keep increasing her steroids. I thought this was a bad since being on the highest dose she relapsed 3 days sooner than she had previously.

I switched back to our old neuro & started weaning Emily off of the steroids by 5 mgs a week. Emily got 5 consecutive days of 20 grams of IVIG & then was put on 20 grams of IVIG 1 time a week. She was on this protocol until the summer of 2007.

Then we did 20 grams of IVIG once a week alternating 20 grams of IVIG once every 10 days. By the time school started in September 2007 she was on 20 grams of IVIG every 2 weeks. We did this until just a few months ago, when we alternated 20 grams IVIG every 2 weeks with 20 grams IVIG every 3 weeks. Now she gets 20 grams of IVIG every 3 weeks. She’s scheduled to receive this dose for 4 months. If all goes well, we will do 20 grams IVIG alternating 3 weeks & 4 weeks then move her to every 4 weeks before the winter.

We saw Emily’s neurologist a few weeks ago & he believes that she is healed. He mentioned remission but I’m just not ready to get my hopes up. Emily’s nurse agrees that she’s in remission but we’re going to keep her on IVIG for some time still. Since the full life of IVIG is 42 days, I want to make sure she can at least get to that before we discuss taking her off completely. As you can see, we definetly were on a roller coaster ride for awhile & I just don’t want to go through that again…for myself or for Emily.

I wrote this out so you can see what we did & what worked for us. As I said, Emily is has a rare case. I’m sure your daughter won’t need as much IVIG as Emi did…but she definetly needs more than what she’s getting now.

Good luck,
Kelly