[tri-med] Re: Partial Trisomy 5q

>>>>>>>>>>>>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.......<<<<<<<<<<<<<<




are you talking about doubling her dose of tegeretol?????????  The dose
depends on the effect it has on the blood levels.  Rebecca is on ( as
far as I can tell, from speaking to adults on it) a high
dose............but then her blood levels are low.  Yes she is sleepy
after giving it but it is a short term sleepy............ie if I want
her to be awake for an appointment I give it after the appointment.  The
sleepiness was the same on the lower doses she was on when she was
younger, I fell it is just her responding to the drug, most people I
speak to who take tegratrol say that the sedating effects are short
lived.


Don't fight with dragons, for you are crunchy and good with Ketchup.

Susan mom to Rebecca trisomy 18 moasaic age 12 and Mark LD/ADD age 11.
wife to Glenn
Ontario Canada




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

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