Reply To: 12-year old son newly diagnosed

Anonymous
July 30, 2012 at 11:44 pm

Wow, thank you so much to both of you for your responses. Dawn-I hope you received good news from the neurologist today! It is good to hear how well your son is doing. My son really just wants to be able to run and play basketball again!

Mitchell’s spine MRI showed increased intensity, mostly in the posterior column, from c-t spine. That’s fancy for inflammation according to the docs. This is one of the reasons they are categorizing him as atypical CIDP. Our doctor isn’t too disturbed by the spinal cord findings, though, and says there are definitely examples in the literature of CNS involvement with CIDP. She also wonders how many patients are diagnosed with CIDP and never have a spine MRI and how many of them would have had CNS involvement had they been scanned.

I am definitely going to bring up trying IVIG again at our appointment with the neuro-muscular doctor next Thursday. We have only seen that doctor when Mitchell was an inpatient for the steroids a few weeks ago. I am fairly confident in Dr. Connolly’s knowledge of CIDP and treatments for it. When we were in the hospital and she told us that the diagnosis was CIDP, I googled it and found an article from Pediatric Neurology from 2001 and found an article written by Dr. Connolly titled “CIDP in childhood,” so I definitely felt assured by her knowledge! Her colleague at Washington University, Dr. Pestronk, has also contributed to many articles on CIDP. I am praying, though, that she will be open to my questions and that we can have a good working relationship because everything you have all told me and I have read really seems like we need to have a good relationship with our doctor and need to find a doctor who is available and willing to change things up if necessary.
I have printed out our conversations here on the forum and underlined specific topics I want to discuss at our appointment!

I printed out some information from the Foundation’s website and sent it to our school nurse to get started on the 504 plan. She is very willing to let me tailor the plan to his needs. My top concerns are: 1. His hearing loss, while improving, we need to make sure teachers are aware and he has up front seating, 2. Gym class–there is no way he could do running or balance type activities now. At least he couldn’t do them WELL and to have them tied to a grade would be unfair, and 3. The possibility of missing school.
Any other thoughts on school and the 504?

Final question for now–physical therapy. When he was an inpatient, they gave him a stretching routine that he has been doing twice a day. He has his first outpatient physical therapy appointment on Wednesday and I don’t really know what to expect. It won’t be the same therapist as when he was evaluated as an inpatient so I’m not sure if she’ll be able to tell if he has improved or not. Do I push for more outpatient PT? I feel like it can only help, but I’m not sure how much we should be pushing him or how much he should be doing as far as exercise. As much as he can tolerate?

My email address is michelekherndon@gmail.com
I would love to continue communicating with you all. Thanks so much for your support so far!