Reply To: New Member
Sorry to hear about your wife. My 11 y/o has cidp. We had a few ups and downs regarding a dx. Once we got to the right doc. things changed. As mentioned an honest doc willing to listen and admit he is searching is the best thing you could ask for. That means he cares enough to get to the bottom of things.
I assume your wife had a spinal, that would be a reliable diagnostic tool, but as other tests, it too does not always come back positive.
Once we met up with our current doc, we had another bit of confusion. We had a dx of gbs that turned out to be cidp. In the meantime, because they start out presenting the same, it made it very difficult to separate the two. The best plan we utilized was after a fair amount of time and a resurgence of symptoms, we did ivig again.
I would say ivig SOON is what your wife needs. The first time would probably be in a hospital setting to make sure she has no reactions to it. Usally the first time, a loading dose, is 2g/kg over 5 days. A slow flo rate is important. it helps with reaction and is safer in general, long term too, regarding kidneys. The hospital would premedicate her with basics like tylenol and benadryl and follow up every 4-6 hours for the duration. After her first treatment, she could get it at home if you like or at an out patient facility. Sometimes it depends on different insurances. We do it at home through a home health agency called Coram who we love. They stay the whole time. kevin’s time is 6 hours/40 min. over 4 days. Being at home makes things comfortable and relaxed. If you do decide to do it at home, I could give you info on how to get on lists to make sure you always get ivig. Good luck!!!