Reply To: Exacerbation – scared

June 8, 2012 at 12:55 am

We all know Emily is an exception – certainly NOT the rule. When she had her 1st relapse (when her dx was changed from GBS to CIDP) her dr ordered a 5 day loading dose. On the 5th day, she was discharged from the hospital & set up with home health care. The dr ordered her to get IVIG 3 times a week for 2 weeks (at 4 grams per kg PER infusion), 2 times a week for 2 weeks & then 1 time a week for 2 weeks. She relapsed (her eye started turning in towards her nose again – it’s always been her eye that goes first) during the 2nd week of every 2 weeks.

At that point, we realized she needed IVIG 2 times a week to maintain. So we started over again with another 5 day loading dose of 4 grams per kg & then started the 2 days of IVIG per week.

She was 4 at the time & I’ve read that kids can handle a higher dosage of IVIG at each infusion than adults can handle. I believe, with every ounce of my being, if we didn’t treat her as aggressively as we did, she would not be the “normal” kid she is today. I believe she would have been left with a level of dysfunction that I’m not comfortable with.

That being said, since I have seen what IVIG can do in my own child – I personally do not believe that any level of dysfunction is acceptable. I believe one should ALWAYS strive to be as close to “normal” as possible. You should NEVER give up fighting to be able to live your life to the fullest.

Kelly (I would write more but Emily & I have to do a quick clean up of the house & she started 5 minutes ago & is giving me the stinky eye)