My name is Amanda.. I'm a mother of 2special little boys.. Joseph,13 years old, is dx with asthma, migraines, Arnold chiari malformation, bipolar 2, some really fancy words for using the bathroom on himself, and a few more things... Devin, 11 years old, is dx with autism, migraines, charcot Marie tooth..
As of this morning Joseph and I are in the hospital for 3rd round of she therapy... He was dx at the age of 4.... We knew something was wrong bc he would grab the back of his head and start screaming and nothing would calm him down... When we first got told the Dr said, "your son's brain is going down his spinal column, but don't worry. Any questions? " I was in shock and didn't know what to say.. At this time we walked 6blocks home... When I got home I told my bf(now husband) what the Dr said... I called the Dr and ask for a copy of his MRI results.. This is how I found out what Joseph had.. I started researching.. Joseph was put on depakote sprinkles for migraines at this time...
This past year Joseph's migraines got worse so we called Dr to see if maybe it was the acm.. Joseph went through another MRI.. We were told his spinal cord has still not grown and so that is why he still is hurting.. The Dr then pulled him off his depakote and put on topamax . He was put in the hospital in July for she treatment. When we were released we went for a fun Dr free weekend.. That didn't happen.. Joseph's appendix burst..In December he was admitted again. Then when he got out seraquol was added..
As of April 25 the Dr also added clondine.. This helped him sleep but his migraines are worse... So this morning we were admitted again for she treatment ..