Posted by Sherry on 6/10/2008, 9:59 pm, in reply to "It has been awhile..."
75.16.226.240
Melanie,
The kids looke great! Your update on AJ sounds very encouraging as well. He and Evan are so similar in their AGS progression. They both even look very much alike with their dark hair.
I was surprised to hear that AJ takes 50,000 IU of Vit. D. With all of Evan's bone issues he takes 1.5 ml (12,000 IU) of calciferol. His last few Vit. D 25 levels ranged from 12-20. His phosphorus levels have been normal. There are so many unknowns about AGS. It is so frustrating.
thanks for the update. Your little one has gotten so big. Seems like you just had him!!!
hugs to all of you,
Sherry
--Previous Message--
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: Hello Friends,
:
: It has been awhile since my last
: post...Things are going well for AJ. He is
: finishing up school this week (pre-k
: language class in the county) and we are
: looking forward to the summer. Just a quick
: run down...The liver seems stable(spleen is
: getting larger, liver is getting smaller,
: platelets just under normal, etc.) We are
: still working on the low vit. d and
: phosphorus. We now have him on 50,000 IU of
: vit. d storage form and 1ml of calcitriol
: active form. His last labs showed his
: active levels in the normal range and the
: storage levels very low. If they still
: can't get his storage form of vit. levels up
: then they want to try light therapy. In the
: mean time, AJ gets physical therapy 4 times
: a week to help with his weak muscles. It
: seems to be working because AJ took several
: little steps by himself last week. The
: first time in several months. He used to be
: an independent walker until late last year.
: We follow up with cardiology in the summer
: and hope to get through another year without
: surgery.
:
: The real reason for my post was to ask a
: question. I was speaking to a friend who
: lives in Ohio and said there was a special
: on a child who has AGS and had been making
: their own concoction of vitamins and such to
: help with the skeletal problems. The child
: was 8 years old. Just curious as to who
: this was and would love to know where we
: could see the special.
:
: I have read updates on all of our little
: Alagille friends and they are all in our
: hearts and prayers during their ups and
: downs.
:
: Take Care,
: Melanie
:
:
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