Hypophosphatasia-L Archives

Archiver > Hypophosphatasia > 2000-03 > 0953353067


From: "Kelley / Scott Benedict" <>
Subject: [Hypophosphatasia] Fw: finally a diagnosis! and a trip to St. Louis shriners hospital with Dr. whyte
Date: Fri, 17 Mar 2000 23:17:47 -0500


----------
> From: Kelley / Scott Benedict <>
> To:
> Subject: finally a diagnosis! and a trip to St. Louis shriners hospital
with Dr. whyte
> Date: Friday, March 17, 2000 11:09 PM
>
> Hi
>
> My name is Kelley and I have been talking with people on the list since
> July 1999 when my daughter- now 14 months -began testing for this
> hypophophatasia disorder.
>
> We just returned from St. Louis Shriner's hospital for children on Sunday
> and we had the opportunity to let Dr. Whyte and Dr. eddy at the Hospital
> test both of our children as well as my husband and myself. I just wanted
> to let those of you whom I have spoken with in the past know what the
> findings were and of course I am still full of questions!!!! :)
>
> Findings were that my son and my husband were neither carriers nor
effected
> by the disorder . I had a low alkaline phosphate level yet a normal B6
> level so they classified me as a carrier and my daughter as having hypo
> because her alkaline level was low and her B6 high and her calcium in her
> blood was very high.
>
> A very important fact I discovered was PEDISURE is not a product children
> with hypo should have. VERY bad because it has 3 times the normal amount
> of calcium that a bottle of formula has! Don't give pedisure without
> checking to make sure it is ok!! We raised my daughters blood calcium by
2
> in doing this and now we are headed to get a renal ultrasound to make
sure
> there is no damage to the kidneys! She has been put on a prescription
> formula called calci- lo XD has any one heard of this or does anyone have
> their child on it?? She seems to like it but it is very expensive so
> needless to say we save every last drop!! And I am not too happy with my
> doctor here who suggested the pedisure! :(
>
> They said molly has a mild case of hypo and that she may walk with a
> waddle, loose some teeth and not be very athletic. I am curious to see
if
> any of you out their have had these similar problems with a Mild case and
> how many teeth were lost early- did it result in speech problems?? Is
your
> child on calci-lo formula? What exactly is a "waddle" walk? What else
is
> it that I should be looking for in her??
>
> I just want to say the hospital in St. Louis was WONDERFUL and very child
> oriented! They had fun things to do at night and it was very low stress
> during the day. The nurses were awesome and it is just a wonderful place
> to go if you have not had the opportunity yet. It is nice to talk to a
> doctor who actually knows about the disorder and to hear first hand what
> is going on and what to possibly expect!! The shriners are wonderful
> people and a wonderful organization! They paid for our entire trip and we
> can never say THANK YOU enough to them to show our appreciation!!
>
> Hope to hear from you guys soon!
>
> Kelley
>

This thread: