Paula

My name is Mindy and my daughter Hailey has AHC...she will be 9 this month
(Jan.) ( Hard to believe we've made it this long)
I just read your letter and there are lots of thing that you say Ian doe
that my daughter does...there are plenty of times when she is in an attack (as
we call it) and she vomits...other times that she is in an attack and doesn't
vomit...I think the ones when she vomits are ones where she must get a
migraine also....(you know how they say AHC can be migraine related) the
other
times she must not get the bad headache.( Hailey won't tell me how she is
feeling though)
Like you we spent several times in the ER...until she was diagnosed at 10
months..........I live in Jersey and was unable to attend the conference this
time...If you saw Hailey you would not even know she was sick...if you saw her
walk you might think she has a bit of CP....other than that she talks to us
like anyone else...knows her ABC's, can count, knows her colors, shapes, she
can't write though...she has a hard time holding a pen or pencil.......she
can't read......she eats very messy....
I don't know what I really am trying to say..just trying to explain I
guess........I know it's hard and I remember wanting to find out what was wrong
with my child so bad and then finding out and it is this rare disease that know
one can really help us with (excuse my french) But it just SUCKS....
What you said about him banging his head......whenever Hailey gets hurt she
has an attack...not always a bad one (bad ones to us are the one that effect
her whole body...the not so bad ones are the one sided attacks.............
oh well please feel free to ask as many questions as you like...
Hang in there

Mindy Jonkoski


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