Selah with CIDP

May 24, 2009 at 10:15 pm

I also am sorry that Selah has CIDP, but I am glad that someone is committing to what she has and especially that they are going to be aggressive about treating it. I think being aggressive is the most important thing. I would guess that Selah as a 2 year old is about 22-33 pounds (10-15 kg) so that she is probably getting 0.33 to 0.5 g/kg per dose. My understanding is that it has been a while since she had immunoglobulin. This means that she will have to build up to a therapeutic dose. Many people get a loading dose of 2 g/kg and then go on to get the follow-up schedule to keep the immunoglobulin level stable. If Selah is not a lot better in a couple of weeks, consider asking about getting the loading dose to get her up to a realy good level before working to maintain this level.

Regarding being patient when you are two years old–lots of the kids bring videos, coloring books, art projects, books to have read, games to play, etc and lots of the kids getting long infusions in the hospital where I work also pack a snack to have. It makes it a special “picnic” at the clinic. the parents often have a rather large carry bag or even duffle that they keep stocked with things for clinic.

There is an IV device called a port-a-cath (or port) that a lot of the little children get if they are getting frequent infusions. Some of the kids (like Kevie) on this site have one. Another possibility is a PICC line–which is temporary, but helps to give an easier IV access if Selah is going to continue to get very frequent IV immunoglobulin treatments. It is really hard for very little ones to get poked for IVs every week–especially if they are a “hard stick”. One of the children at the clinic where I work has only had IVs for almost five years of treatment, but she is older than Selah and all the others getting monthly immunoglobulin at this children’s hospital have gotten a port. Ports are placed in children in the operating room with the child asleep and there is a small risk of infection with use of them, but the “trauma” of having an IV started in really little children often makes having an easy IV access much, much more benefit than risk.

WithHope for a cure of these diseases.