[tri-med] Re: Partial Trisomy 5q

Thank You Ruth for the Welcome : ) ~ Love your quote!!
"The more you count your blessings, the more blessings you have to count!"
 
Thanks Fawna for the Welcome : )  
>Philina has never had a seizure in her life, but I use to
baby-sit for a child who was on Tegretol.  The one thing I
distinctly remember his doctor saying about it was, never
buy the generic brand.  They really aren't identical, and 
he would never give it to his child!!! > That's is eerie as today
at the neurologist, he asked me to check with CVS to find out their
supplier for generic brand of tegretol she is taking, because each
supplier may have a different effect on her and best to stick with
the brand name. Bad thing is they want to double her dosing and
take her off the B6 and see if her behavior is effected by it. Her 
sleeping and lack of appetite would be a clue... but he blamed
it on the Ceftin, anti-biotic for possible ear infection. 
~ got a chuckle on the Please Note: at end of your message 
 
Debbie, your kind words are much appreciated and Thank you for the
wishes and prayers. When I had my amnio done with Faith, they called
and told us "Congrats, you are having a boy" Went to get the paperwork
a few days later and it said girl, they redid the test and yep its a girl.
Although she acts like a tomboy most of the time, if that counts HA,
but thought amnios 100% with the DNA. 
 
Nicole, my condolences for your Angel Kasidy, I went to your site and she
was a beautiful baby Nicole, those eyes of hers just melted me....
 
Penny, your letter gives me much hope with your Devon!! Its amazing what
I have learned from parents on karotyping/DNA than from doctors themselves.
The shared experiences really do help me to not only deal, but understand
Genevieve more.... Thank you Penny!! Your sites are great!! 
Your kids look so happy : )
 
Susan Thank You for the great welcome!! Today we found out the neurologist
wants to double her dosing and I can see my zombie baby returning as she 
was on trileptal. It was like a fog over her. Pure nightmare. Tempted to say
No, keep her on B6, keep Diastat on hand, but because third seizure was 30
min Gran Mal, he said she has tendency for long ones, its needed, so I am
jepardizing her health by saying NO? Gawd the frustration is so overwhelming
at times.......
 
Chris, Thanks for the wonderful letter....ah where to start.... Genevieve, her 
name.
My husband John & I vetoed several but both agreed on Genevieve, medieval 
sounding from the olde world of sorts. John was watching an old Errol Flynn 
movie and the woman's character was named Arabella, John came up with Genevieve 
Arabella Padgett, i said great her initials are GAP, buy her clothes at the GAP 
store, he didn't think of that HA She was born on a Sunday and previously John 
heard this song about a girl named Sunday, in love with a girl named Sunday, 
and he wanted to change her name to Genevieve Arabella Sunday Padgett, GASP, I 
gasped and vetoed it, no daughter of mine yadda yadda, so we stuck with 
original... though if one day she is able to write her name, boy are her dad & 
I in hot water for long name HA We are about an hour from Indy between Anderson 
and Muncie, out numbered by corn stalks at the moment. The doctors in Indy are 
so wonderful!! I did check out pics of Mari and she is adorable!! The one pic I 
had to do a double take because the way her face was turned it
 resembled Genevieve, amazing.
 
I didn't know if there is a gallery here for our babes or not to post or 
upload. Gosh I know I must be rambling on so to speak, but I hope I didn't omit 
anyone who replied and can't Thank you all enough, just to be able to touch 
base with this group means so much.
 
It' getting late, whoa just saw the clock, I have a bed calling my name, but 
again Thanks : ) Have a Great Holiday Weekend!!
 
Pamela
mom to Savannah, 44 days shy of 15 going on 20, 
Faith, 4 and Genevieve, 13 months old : ) 
(46,XX, dup inv ins 5 (q31.3; q35.1q34), missed amnio) 
 
Teenagers or toddlers not sure which one will do me in  : )
 
 
 
 
 
 



 


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