Update on Ashleigh

It has been awhile.  Ashleigh brought home the flu GI bug.  Then, Noah had it.  Ethan next.  Finally, me.  We all didn't have all the same symptoms.  Ethan was the one that was back to normal in about 30 hours.  He only missed 1 day of school.  Noah missed 4.  Ashleigh, well, she didn't tell us until days later she throw up.  Long story.  Shawn was off last weekend so he handled everything so I could sleep and rest.  We all had enough of the BRAT diet.

Ashleigh saw a neurogeneticist so we can get some answers about her HSP.  The doctor asked when Ashleigh was diagnosed.  It was July 7, 2008.  I had it all written up in her website.  Thank goodness for the website when my memory can not remember everything.  The doctor asked what type.  I said SPG4 and I have the paper at home that says that.  So, the place where the genetic testing was done at.  The doctor is going to get them to re look at things.  The cause was unknown, but since it has been almost 10 years, that unknown cause could be something now.  There is a mutation of a gene (SPG4) that caused her HSP.  Either Shawn and I have any symptoms and she said we would be showing something by now.  The PVL, Hyper Joint Mobility, & the Autism can be all related to the unrelated genetic disease aka the unknown.

In 4-6 weeks, if I do not hear from this doctor, I have to call her nurse.  She wants to see Ashleigh again and I hope we will have more answers.

Melissa