kids on suppressors?

Lori, (Dell’s mom)

I recognize your name from the child’s page. Its seems that there are a few kids out there who are not responding to standard treatments. Cole’s next neuro appointment is in June. We see them every 3 months and each time they change the meds slightly usually with virtually no effect or a detrimental one. I guess I am gathering info to convince them that a more agressive or alternative treatment is best. I attended the Canadian CIDP/GBS conference last week and got the opportunity to talk to a few parents and neuro’s about their cases. I talked to a mom whose daughter went into remission after 13 years of treatment. She had been on ~ 30 mg prednzone when she weighed only 30 lb. Every time they weaned she relapsed, so after a few years at that dosage they put her on Imuran. Another doctor I talked to said that he has a patient that did not respond to ivig and got worse on suppressors — that only plasma pheresis worked.

those cases offer a couple of alternatives for Cole that we haven’t tried. That is 2x the highest steroid dosage that Cole was ever on. Have you ever tried PP? None of cole’s neuros have even suggested, (and he has seen 4 different neuros in the 6 years since dx).

Anyway, I will certainly let you know what happens with Cole’s treatment and would like to hear about dell. You can email me directly at [email]ebl@burltech.com[/email].

thanks

betty

Hi Betty –

I’ve researched CIDP alot and the common trend among CIDP’ers is that they each respond to different treatments and different dosages. No one responds the same, just as CIDP effects each person differently.

Emily gets ALOT of IVIG as I posted to you about in the children’s thread. We tried to put her on oral prednisone but she got worse. She was on 20mg’s every other day & on the off days 17.5 mg’s. She was 42 lbs when we started & 51 lbs 7 weeks later when we weaned her off. The neuro wanted to continue to increase the dosage and I declined & switched back to our old neuro. She said that the max dosage for a child Emi’s size was 40 mg’s per day.

I think that you really do need to discuss Cole’s treatments with his dr’s. I believe you wrote before that he responded better to oral steroids than the infused. I think that is worth bringing up to them again. Print out as much info as you can find on ANY & ALL treatment options available. Make them explain them to you & go over EVERY single concern that you have. There is NO reason that 6 years into this disease you still don’t have a handle on it. They HAVE to do something. I would be very blunt with them & let them know that you mean business, you want action & answers. Sometimes you have to stand up to dr’s to let them know that you want something different & you want them to pay attention. I’ve had to do this with Emi’s neuro a few times. Now he knows that I mean business.

I’ve done a bit of research on plasmapheresis as it was suggested by a neuro for Emily. Basically, they don’t really want to do it on children that are younger than 5 years old. They will insert a catheder into each side of the neck. 1 takes the blood out & the other puts the “cleaned” blood back in. The patient has to stay in bed & I’m told they should not move around much. It’s a VERY precise procedure as they want to make sure that they aren’t removing too much blood at 1 time so it would have to be done somewhere that is VERY familiar with it. It depletes the immune system so if you are going to do it, do it in the summertime when he’s not exposed to alot of children & germs at school.

Before doing that though, personally, I would try other immuno suppressants like Methotrexate. From what I was told by our immunologist it is very effective & has less side effects than other similar drugs. Eventhough it’s a cancer drug, given in low doses it’s easier on the body to handle than when taken to fight cancer. The dr said that people do not lose their hair or have any of those kinds of side effects. It also supposedly has less side effects than the steroids do.

Finally I have to say that I am EXTREMELY grateful to read that after 13 years that child’s CIDP went into remission. That is my hope for all of these kids. I truly believe that Emi’s CIDP will go into remission some day. Thank you for sharing that. It really does help me alot to read of it happening to other kids (as I’m sure it helps you & all of the other CIDP’ers as well).

Good luck with the dr’s. Here’s my email address: [email]kpooh_612@yahoo.com[/email], if you ever want to talk.

Kelly