UPDATE/Question on Remicade infusions

[Guest guest]

Hi Fran and group,

I was in the group and so much has gone on I wasn't able to keep up on the group

but I am back.

Fran there is so much to say, here is something that we have learned recently

which is only some. My son nick who is 14 has been dealing with health issues

since birth, chronic infections, pain, etc., well we have been going seeing many

doctor and one thing that has really been showing up with Nick's flares since I

was last on here is his sed rate, crp, esr, b cell count elevated, IGE extremely

high, white blood cells all elevated, IL 6, and much more all extremely elevated

which is consistent with inflammation in his body. We did find with many

biopsies, blood test that Nick for sure has Crohn's disease very severe, but

also the doctors say his flares are with the periodic fever syndrome which

everyone has questioned for so long. Doctors thought immune disorder which is

still being investigated but what they are seeing is very high level marks of

chronic inflammation. Nick's joints are now being affected very moderately,

things have really gotten worse for my son. All the

doctor have now decided that they can't waste anymore time they have to get the

inflammation down in his body so they are going to start him on Remicade

infusions. Has anyone had them or their child? I really want to know about this

medications so please if you know or have dealt with this medication please give

me your input. We are now seeing specialist that are in Seattle WA wonderful

group of doctors and they are going to care for Nick. There is so much to say.

Anyways I gotta run for now but please if you know about Remicade let me know

your thoughts.

Thank you

Sacora casselman/ Nicolas age 14