Re: saw genetisist today...debbi
- Thank you for your response Debbi. Hopefully it won't take the whole
time. I can of suspect our insurance comp. to start denying thing.
We have started to have to provide a lot of explinations to get them
to pay for things. It is a shame that with all there is to deal with
an insurance company has to be one more! I'll keep you posted.
--- In firstname.lastname@example.org, "punkindebbi"
> My daughter, Gracie, has been through all of the same testing that
> your daughter is now going through. I just want to say first off
> that they always told me the tests would take up to two months and
> they never did take the full time! I found that helpful since the
> waiting is so very hard. Gracie had a total of three series of
> tests and all have come back normal. At one point, we werethinking
> she had Prader Willey and that one was very scarey because she hada
> lot of the symptoms, but thankfully the test was normal. She wasknow
> also tested for Angelman's and that was ruled out by 70% and
> insurance will not pay for the furter testing because it costs
> thousands of dollars. Mediteranean Fever was also a big scare and
> she had to have a series of tests done once when she had a high
> fever. It is like a roller coaster ride with all of the emotions
> that you go through when your child is having all of this testing
> done. I found it very helpful that I trusted our geneticist
> completely and he has an assisant that I called a few times when I
> was very scared and she talked me out of it.
> I am wishing you luck with Madisyn's testing! Hang in there, I
> it isn't easy but you will get through. Feel free to write me ifyou
> need to!X,
> Debbi Mommy to Caleb 4 and Gracie 2
> --- In email@example.com, "Helen" <girlee831@h...>
> > Madisyn went to the genetisist today. They are now testing for a
> > whole new group of things. They're testing for Angelman, fragile
> > Retts, a FISH for 15q, carbohydrate deficiency and anotherdr
> > disorder I have never heard of. Now it is the waiting game. The
> > said some of the test will take up to 10 weeks. A week feelslike a
> > year when waiting for test results! Maybe will will find more
> > awnsers though.
> > Helen:)