Robin,

We just got over a bad time with ben (14) and his
platelet count. In january, his counts fell to sub 10
(often 1 or 2) and this lasted until about 6 weeks ago
when he finally had a count of 16. He then rose weekly
to 32, 49 and now 70 (Thank God). He had been on
cellcept but it stopped working for him. He did 4
rituxan treatments in feb and we hope/believe that did
the trick. His hemoglobin also fell to 9 with a retic
count of 16+. That is also normal now.

When his counts were really low, he also had bad mouth
blisters, gum bleeding and bruising and the doctors
were not concerned. It was more of a nuisance than
anything else.

He missed 5 months of 8th grade but did graduate (with
honors) anyway!

So, keep your chin up. Maybe you can look into the
rituxan. Ben did test negative for ALPS so I cannot be
of any help there.

I hope things turn around soon - I know we are
breathing for the first time in 6 months!

Shari (Mom to Ben 14 w/ evans)

>   Hello Everyone:
>
>   Danielle continues to struggle with very low
> platelets (currently her
>   count is 1), this is week 10 and nothing is
> helping.  The doctors
>   have determined that Dani also has ALPS and she is
> part of a study
>   being performed at the Children's Hospital of
> Philadelphia (we live
>   in Orlando, FL).  It has been 11 weeks and her
> platelets have done
>   nothing but go down, she's had several doses of
> IVIG, platelets and
>   now the have switched her from cyclosporine which
> she'd been on for a
>   year to cellcept.  I am feeling increasingly
> discouraged and Dani is
>   so depressed, she just wants to get better so she
> can do the things
>   she loves to do.
>
>   Does anyone have any knowledge of ALPS?  Also,
> Dani has terrible
>   sores all over the inside of her mouth and lips
> and her teeth will
>   not stop bleeding.  Any insight to this?  The
> doctors don't seem to
>   be very concerned about it.  The bruises and
> petichae is
>   unbelievable.  I am scared.
>
>   Robin
>   Mother to Danielle, 15/Evans/ALPS
>
>
>
>
>
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