Re: Just don't know what is happening to my 2 year old with PDCD!*

[Guest guest]

We had a similar experience with ...it was about four months before he died...he had just gone on hospice and we had no idea how to help. It was dementia...and I think neuropathic pain. We finally tried Neurontin and it seemed to help until the next time and then we would try upping the dose. Neurontin has siezure meds (which if it is frontal lobe involvement, as in our case, which controls behavior) and pain med that works on neurological pain...and it worked. He often talked about his knees hurting and also tingling but I can't remember how he said it. He didn't sleep hardly at all those four days...it was not a fun time...I am with you girl!

If you would like to talk by phone about some tactics we used, email me your number (I have free long distance) and time zone with a good time to call...

mom to (07.04.96-05.26.03) with Mitochondrial disease, complex I and IV....Gaige, 5, with High Functioning Autism...Bliss, 3, with very very mild cerebral palsy ...True, born 01.18.05, with GERD and married to one swell man! www.LifeofLoveProject.orgwww.debwells.com