[tri-med] Re: [tri-family] trisomy cells and tests.....

 
 I asked the same, what would it tell us??? she said "nothing."  pretty much
to me sounded like hey lets see what else we can find out even tough it will
make NO differance and isnt going to change the outcome. 

So my answer was "no", if its not going to help her or tell us somethig that
is life changing, then why the heck would I allow them to use her like that?


 Rachael




Rachael Larson 
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From: "jwaite" <jwaite@xxxxxxxxxxxxx>
Reply-To: tri-med@xxxxxxxxxxxxx
To: <tri-med@xxxxxxxxxxxxx>
Subject: [tri-med] Re: [tri-family] trisomy cells and tests.....
Date: Tue, 15 Nov 2005 16:50:32 -0500
>MOVED TO MED LIST
>
>----- Original Message -----
>From: "rachael larson" <rlarson_22@xxxxxxxxxxx>
>So do we put
>>Aleah threw another test????? any insight????? is it worth it????? anyone
>>done it???????
>
>Is the pain worth another answer? (imagining that a muscle biopsey wouldn't
>be a cake walk).
>Would knowing change anything?
>
>Why exactly does the dr feel further testing is necessary or suggested (I
>didn't totally understand that part).
>
>
>>Next I need other 14's expeiences. Growth Hormones????? should we have
>her
>>tested? also thyroids???
>
>From the very small number of t-14's I've had contact with over the years,
>there have been quite a few with GHD (growth hormone deficiency). The
>pharmaceutical company had even followed via a study 5 t-14's who received
>the GHT . (boy, wish I'd have been able to get their names!!).
>
>One very simple test is a bone age study. It's a 1 view x-ray of both hands
>and wrists. If that shows a significant delay then you might have a reason
>to see a pediatric endocrinologist. He/she would then do some lab work
>(including Thyroid) and a physical exam.
>
>Then, if indicated, Aleah would have further testing done. Alex had a 5 hr
>out-patient study done with Clonidine and Argenine. An IV is inserted and
>blood is drawn in at timed intervals and the stimulation meds are given
that
>way as well. It was something like 12 blood draws over the course of 4 hrs.
>
>For insurance to agree to the GHT we needed 2 separate types of testing
>showing the GHD.
>
>Some folks on the list may remember 8 yrs ago my coming with the question
of
>'to growth hormone or not growth hormone'.
>
>It was a VERY difficult decision for us. We did not enter into it lightly.
>
>Basically we decided to go for it because Alex wanted to have a chance to
be
>more 'normal' in height.
>Jim and I looked at safety (there is an increased chance of a particular
>type of brain tumor).
>The potential positives were increased vertical growth.
>Having talked with a few other t-14 parents (whom I no longer have contact
>with as they've disappeared and left no forwarding e-mail addys) ALSO saw
>increased for their child in speech, one in eating ability (was able to eat
>orally after years of tube feeding but it took work), increased abilities
in
>other developmental areas.
>
>We decided to go for it.
>
>While we didn't get the vertical growth that we'd have liked (possibly
>because we started the GHT later than is typical) we did see an increase in
>Alex's reading comprehension JUMP (even the spec ed/gen ed teachers
>commented on it). It was amazing!
>There was also a noticeable increase in his language skills.
>
>Alex's muscle tone improved dramatically, he went from 3 yrs of trying to
do
>a full sit up in his martial arts classes to being able to do it within 3-4
>months of starting the GHT. Same for full push ups. His strength and
stamina
>both increased noticeably.
>
>Within a month of starting the GHT Alex actually ASKED me for food one
>day!!!!! The first time ever!!!!! He finally had an appetite and was
>eating.........at age 10.
>
>Alex received the injections 6 days per week, giving himself the ones in
his
>legs. This went on for a little more than 2 years.
>We had to discontinue them because a bone age study showed that his growth
>plates were closing.
>
>That's all I'm remembering at the moment..........time has a way of
blurring
>the details! lol
>
>Michelle mom to Alex (18, partial trisomy 14 mosaic) and Molly (14)
>MichiganUSA
>
>Building ___ooOOoo__ Rainbows
>www.trisomyonline.org
>Families Helping Families On-line
>


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