Re: Re: Genzyme test

[Guest guest]

Christen,

I am so sorry that you had such a hard time with Genzyme. I only requested them

because one of the mutations that has is not in the most common 25 and

they found it with their first test. Unfortunately, they already have my blood

and the amniotic fluid, so since they are offering this test for for

free, I guess we will go and have it too. I will ask for confirmation that

's test is being done for free though! I hope we have a better outcome

than you did. I wish I had known about this before we requested them for the

test, I would have checked into other tests. (they did forget to tell the

genetic counselor that they needed my blood too so I had to go do that

separately,) I let you know what happens.......

Re: Genzyme test

I could not help myself and reply to your post publicly! When I gave

birth to my daughter (Sept 2, 2003)we did not know if she had CF or

not. Genzyme was the company who was to do the testing. We used the

cord blood. Without going into detail, I will tell you it was one

nightmare followed by another. They did not have their

instructions/requirements in order. What should have taken no more

than 2 weeks took one month and 5 days!!!!!!! That is a LONG time

wondering if your child has CF or not, questioning every poop, cough,

sneeze, etc. Genzyme was completely incompetent and not sympathetic

to our situation!

Let's face it, they are a business and can be shopped just like

shopping different grocery stores. Use another store!

If you still chose to get the free test - MAKE THEM PUT IT IN WRITING

ON THEIR LETTER HEAD.

Not happy with Genzyme,

Christen

mom to 4 wcf and Peyton 5 months no cf

> Hi,

> I was wondering if anyone had been given the option of having

further testing for their CF kid or themselves by Genzyme? I had

requested that our amniotic fluid be sent to Genzyme because they

found both of 's mutations (one common and one less common)

Genzyme wanted 's blood to test as well as the fluid and my

blood, but 's blood test wouldn't be covered by insurance

($300.00 extra is too steep right now for us), so we are just doing

mine and the baby's amniotic fluid. However, Genzyme offered to do

their new test on for free. We go on Thursday to the place

where they did the amnio and they will let her do a " swish and spit "

type of collection of her cells from her mouth. The hospital then

sends it right back to Genzyme and they will do the new test on her.

I don't know why they want to do it, but they are not charging for it

and they say that since the technology has changed in the last few

years that they will get more info, and it will be helpful with the

amnio info.........

> Has anyone heard of this or done it? What can it tell us that is

different than the " Genzyme 70 " test that they used to do?

>

> somewhat confused, but willing to do it if it will help to

determine things for the new baby

>

>