[tri-med] Versed/Tegretol OD/Benecalorie

Hi everyone....boy am I behind in emails....had a favor to ask, I need some 
info for Dr...

Genevieve's neurologist yesterday thinks the Tegretol is causing too many side 
effects like erractic sleeping then being so drowsy, the jerkiness when she 
stands up and collapses or turns around and also may have overloaded her 
kidneys, it causes reduction in urine output, which daycare made a comment a 
few weeks ago that she doesn't have many wet diapers, i didn't think much of it 
till yesterday when he asked.... I asked him if the dosage was too high and he 
thought it is a sensitivity to it and I asked if she is overdosed on it and he 
said with any anti-convulsant you have to play with dosing, so today she goes 
to half to check behaviors/side effects and maybe be off by end of the year. He 
said there is a chance of breakthrough seizures doing this, i told him I would 
take my chances.... he may ask for sleep study first part of '04 if she still 
is on same sleeping pattern, I got 3 hrs last night and it is draining my brain 
from last 2 weeks of hardly any sleep...

He was interested in this support group too, I tried to convince him to join 
and add his 2 cents or just lurk, because so much information from parents is 
available for us starting this ride, he said he is too old to be playing on 
computer, so my conclusion he is most likely a "lurker" already LOL 

I asked him too about Versed which many in posts like better than Diastat as 
less side effects and he admitted, "sometimes it is hard for a doctor to think 
outside the box and we are very arrogant that you(parents) know more than we 
do" (I gave him credit for admitting that) But he said he honestly doesn't 
prescribe Versed and if I brought him some paperwork on it or reviews from 
parents on how they administer it or even dosing he will review it and get us 
some for Genevieve. I Thanked him for not having to wear a certain "Mother from 
Hell" tshirt (think of the fund raising possibilities Karen lol) to my 
appointment with him which he laughed.

So if anyone wants to email me on or off list on Versed I would gladly 
appreciate it...

Oops one more thing, has anyone ever took Benecalorie? They want to prescribe 
it for Genevieve because the rascal is buring too many calories, our 
nutritionist said it has like 330 calories in 1.5 oz? But she wants to look 
into it because its not usually given to little ones...

I'll send an update on rest hopefully by weekend.......

Thanks everyone.... : )

Pamela 
mom to Savannah 15, Faith 4.8 yrs old and Genevieve 15 months who loves to play 
with 'stacking bubbles' (46,XX, dup inv ins 5 (q31.3; q35.1q34), missed amnio) 




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