Pandasmom's Blog

living with PANDAS, not the furry ones…

Invisible Needs February 4, 2010

Filed under: Uncategorized — pandasmom @ 8:21 pm

I hope very much that this post will not be taken as offensive to anyone who has a child (or they themselves have) with visible needs. 

During a good moment, a stranger looking at A would see a perfect child.  In this respect, we are extremely lucky.  We have a wonderful, beautiful daughter.  However, with perceived perfection come expectations; it appears to be human nature.  The expectations do not fall short even with us, her parents.  We are not immune to expecting her to be able to act a certain way, perform at a certain level or conform to society at an age appropriate level. 

Sometimes I wonder how things would be different if we were dealing with a condition that were visible to everyone.  If we had something that didn’t require a 20 minute, in-depth explanation that sometimes only ends up confusing people more than when we started.  Would the difficulties surrounding the PANDAS be more easily accepted?  Would people, her parents included, have more sympathy for the constant difficulties A faces all day long?  I would never wish for a different affliction than what we have, I’m just wondering if visibility brings about more compassion. 

 

Traveling with PANDAS February 1, 2010

Filed under: Uncategorized — pandasmom @ 4:03 pm

We are flying cross country today to attend a funeral.  Our beloved Poppie passed away this morning.  Poppie was the most wonderful man, father, grandfather, husband and more and we are lost without him.  The loss is so new that we have not yet accepted it.

We have only traveled one time since A got sick 14 months ago.  That trip was very difficult and we knew then that we wouldn’t travel again until we resolved this.  Of course, our last trip was at least 8 months ago and at that time we still believed there would be a resolution to this situation.  We now know that there is no resolution but instead we need to cope and create the most successful life we can.  Embarking on a cross country trip during the last 9 days of A’s IVIG cycle fills me with fear.  The only benefit to this is that A has been wanting to go to Poppie’s house for the last 14 months but has been unable to do so.  I’m hopeful that the change in her regular routine will get us through. 

A also has a cold which increases her symptoms quite a bit.  Today we are seeing:

  • Signs of OCD: unable to walk on any cracks at the airport
  • Moderate rigidity
  • Eye rolling
  • Inability to use words to convey frustration

All of these symptoms are still on a moderate level.  They can get significantly worse, so we are still ok.  If we can stay at this level, we will be ok.