Getting there

November 8, 2009 at 1:58 pm

Payton had a check-up the week of Oct 19th, and since she appeared (on the outside) to be doing quite well – she had energy, was eating well, wasn’t complaining of any tingling, and wasn’t getting hardly any migraines – we really didn’t want to go. Well, we’re glad we did because her nerve conduction showed that while she ‘appeared’ to be fine, her nerves still weren’t regenerating at a good level, and the neuro’s were afraid one muscle in her leg might have even atrophied some, although you can’t really tell in her walk (maybe she’s learned to compensate). Anyway, they gave us an order for more IVIG, but allowed us to finally start receiving them here at home. She needs to get three total treatments (12 total days) before Feb, and then we go back to Augusta for a follow-up.

So, Payton just finished her first round (four days) of IVIG during a ‘home’ treatment. The reason it is ‘home’ is because it was scheduled in such a short amount of time that they didn’t have enough nurses to cover the time actually at our house. However, it was done at a great facility here in town, so that meant we didn’t have to drive 4 1/2 hours to the hospital in Augusta. The nurses were great! I tell you God has truly blessed us so far with great medical care for our daughter. There have been some stressful times but everything always works out in the end.

She’ll have another round the first week of Dec, and again in Jan and we’ll go back to Augusta in Feb for a check-up.

I got promoted this past week and now we are moving – looks like to Sacramento, CA. So, does anyone know of any good GBS-CIDP neurologists in that area? If there aren’t many initmately familiar with the disease, I’m going to ask to be moved somewhere else because I’m not putting my daughters health at risk. Nor am I going to bear all the stress of having to explain to a brand new neurologist all about the IVIG, steroids, etc etc.:mad:

Thanks again for all the info, it has been helpful.