Thank you all for your continued support.
She’s still in Sister Kenny and her grip strength test have stabilized. She’s mentioned a tingling has returned (which has prefaced improvement times). She’s a touch weaker from yesterday but I think the key is stabilization. I think the overall direction of state is almost more important to us than the actual state of her condition. If we get back to an improving direction, that’s super.
Jane, I actually tried to send you a private e-mail because of the age of your daughter (my wife is turning 32 – so she’s quite close in age). We actually live less than a mile from North Memorial. There’s an inpatient rehabilitation facility there at North Memorial but we opted for Sister Kenny. I hear both are good – once your daughter improves.
My wife also had plasma transfer (7) and started regressing within a few days of inpatient rehab. I am thankful she has not declined greatly and I offer my sincere empathies to you. She’s getting her third IVIG today. Neuro did say that CIDP is definitely not what she suspects.
The article I found on GBS-TRF vs. A-CDIP is here: [url]http://www.neurology.org/cgi/content/full/65/1/138[/url] – I haven’t come across any article that mentioned the acronyms specifically as such, so I’m not sure how worthwhile it is.
Jane, please feel free to contact me via e-mail directly – with the proximity, my wife and your daughter experiencing to some degree some ups and downs with GBS (admittedly your daughter has had it far tougher), and them being within a year of age – it could be a nice connection if both are interested. No worries if not. My e-mail is [email]email@example.com[/email]
edit: our first neuro was Dr. Murphy and Dr. Francis – had them up at Mercy Hospital in Coon Rapids. We have different neuro’s here – I think we had our “permanent” one assigned today but I don’t recall her name.