Re: ugh another diagnosis! vent

[Guest guest]

Do the tests to see what needs to be treated then tell them to screw off because

ur baby is perfect the way he is no matter what anyone says. I personally don't

care what the doctors say about my son he is perfect and is smart and will go

far in the world because I know he can.

Amy (mom to Julyan 4, pmg,and digeorge syndrome)

Sent from my iPhone

> we just got diagnosed with generalized pmg on friday then yesterday we go to

see geneticist and because of his macrocephaly and large hands and feet and the

neuro saying cerebral giganticism we are now bein tested for sotos syndrome...

its nice to have answers but its almost like what next lol just venting .. its

stressful to me my baby is perfect but everyone keeps telling me there is more

and more stuff wrong with him. kinda breaks your heart a little or mine.

>

>

[Guest guest]

i feel exactly the same just want them to find the answers they want so we can

move on with our life !

>

> > we just got diagnosed with generalized pmg on friday then yesterday we go to

see geneticist and because of his macrocephaly and large hands and feet and the

neuro saying cerebral giganticism we are now bein tested for sotos syndrome...

its nice to have answers but its almost like what next lol just venting .. its

stressful to me my baby is perfect but everyone keeps telling me there is more

and more stuff wrong with him. kinda breaks your heart a little or mine.

> >

> >

>

>

>

[Guest guest]

Hi le,

our daughter also has macrocephaly and was tested for Sotos syndrome. She has 

bilateral perisylvian PMG and is 4 years old. She was diagnosed at 3 weeks

old.  They gave her " another diagnosis " of macrocephaly capillary malformaton

syndrome. I can relate to the frustration of specialists picking apart your

beautiful child. It breaks your heart. Be strong and hang in there!

mom to

 

Subject: ugh another diagnosis! vent

To: polymicrogyria

Date: Thursday, October 7, 2010, 5:16 PM

 

we just got diagnosed with generalized pmg on friday then yesterday we go

to see geneticist and because of his macrocephaly and large hands and feet and

the neuro saying cerebral giganticism we are now bein tested for sotos

syndrome... its nice to have answers but its almost like what next lol just

venting .. its stressful to me my baby is perfect but everyone keeps telling me

there is more and more stuff wrong with him. kinda breaks your heart a little or

mine.