Reply To: Daughter with GBS later catogorised to CIDP and new lne of treatment
Madeleine is in fact 9 years old and a fourth grader and the school that she has been missing was last year mostly as she would go for her ivig and then was having terrible side effects for days. Fortunately she is now drinking a lot and for the past three treatments has not had any side effects of headaches and vomiting which is a big relief. She is starting school next week and we shall see how things go. As for the 504 we will ask for it probably if we go back public next year but again all will depends on her health improvement. What is unbelievable is the rapid effect of the ivig. Madeleine never had any pain but just weakness in her legs her upper body is always fine apart from the double vision. She declines when the ivig wears off (day14) in the matter of three or four days she goes from running to having a drop foot and having horrible time raising from a sitting position or going up stairs. Once she had the ivig she is fine and after two days she can run upstairs , ride the pony and canter ( she is proud of this part) and really has a normal life and resumes business as usual/ Nobody could tell that she has this. At this point I am still convinced that we are still dealing with GBS and not CIDP, even if Dr have to say CIDP because this is what the books say after 3 relapses. I am not buying it yet.
Regarding the port I was talking with her nurse at the hospital where she has now the ivig every 12 days and she assures me that we will be fine without this invasive solution we will either be changing hands or going up in her arms. It is true that Madeleine’s veins have not been a problem at all and changing where we do it will be the way we do it. We want to say that the less medicalize the better and that after the treatment her life is back to normal again. This is why we now refuse anything else than IVIG after the detrimental response to the initial Pulse Solumedrol that we discontinued straight away. We stay with the team that wins ( Madeleine+ IVIG and nothing else)
Here is my email and I can give you my phone number via this route. firstname.lastname@example.org.