[tri-med] Info Needed for Surgery

Kathey has asked me to forward this to you in the hope that you can help 
Candice. For those who have not met Kathey I will give you
a little background. Kathey is wife to Gilbert and mum to Kandice, who has T-18 
mosaic and is now 12 years old.
Kandice suffers, among other issues, severe seizures and had a vagal nerve 
stimulator implanted last year.

Kathey's note has the potential to be controversial, I am not saying that it 
will be, just that it has the potential (from
experience on other lists) :-) I also know however that you guys will be 
understanding, and help Kathey in what is a difficult and
obviously dangerous situation.

Kathey is now on the list again, so you can reply to the list, or if you prefer 
to e-mail her privately let me know and I will send
you her e-mail address. (if I send it to the list it will remain in the public 
archives, which for privacy I wont do)

>>Would like to know if there are any parents out there with T18 or t18 mosaic 
>>children that have had to have a partial
hysterectomy.
Our daughter Kandice is 12 years old and has a seizure disorder. This makes it 
impossible for her to take the Depovera shots as they
can cause seizures to occur. Her periods have been irregular since they started 
at the age of 10. She missed 2 months and when she
had one this last time she bleed for 6 weeks. In the process of all this her 
blood count dropped to a very low 23. She has been
placed on birth control to try and stop the period and is currently taking 2 
pills a day, but is still spotting. All of her doctors
agree that it is in her best interest not only for sanitary reasons, but for 
her well being to do this surgery. The problem we face
is she is not old enough to consent and even if she were she would not know 
what it meant or what they were going to do. Our lawyer
is getting a court order from a judge to have this done. We are in hopes that 
there are other parents out there that have been
through this same situation and can give us some insight into it.
Please let us know if any of you have had to have this done and how it affected 
your child. We are concerned that since Trisomy can
affect so many different parts of the body there could be repercussions later.
But, at the same time we are caught between a rock and a hard place if we can't 
keep the bleeding under control we could lose her to
that. Any information you might have would be greatly appreciated

Thank You So Much
Kathey and Gilbert Infiger
Parents to Kandice Infinger T18 Mosaic

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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