[tri-med] Re: tri-med Digest V2 #334

tri-med Digest Sat, 30 Aug 2003 Volume: 02 Issue: 334

From: "Sue&Glenn Hardy" 
Subject: [tri-med] Re: Partial Trisomy 5q
Date: Sat, 30 Aug 2003 23:11:44 -0400

>>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.<<

Yes they want to double the dose this coming Wednesday after she is done with 
the ceftin, anti-biotic. When she was on trileptal it was .5cc twice a day, did 
blood levels and not at theurpuetic levels and neurologist wanted it tripled 
and I said no and fired him and found another. Tegretol is 1/2 tsp once a day 
and going to twice a day and check blood levels in one month to adjust it if 
neccessary. I worry about lack of appetite and being sleepy the most. During 
Trileptal phase it was hard to keep her awake during therapies and sleep about 
16 hrs a day. Again, I worry about the quality of life for Genevieve. 


From: "Sue&Glenn Hardy" 
Subject: [tri-med] Re: Partial Trisomy 5q(amnio errors)
Date: Sat, 30 Aug 2003 23:33:21 -0400



>>>>>>>>>>>What Genevieve has been through i would wish on no one.
Horrible to think that way, don't get me wrong I Love my daughter and
don't resent her. But an error at lab was done. Lawsuit to find out if
human error or what happened so that it doesn't happen to someone else. I mean 
gosh what if a lab tech is Pro-Life and knew what we might have done if we 
knew? What if there is an actual flaw in a particular test? I want this place 
shut down and laws in effect to prevent this from happeneing again. Sorry about 
venting... kills me the lawsuit is wrongful life. That term hits me wrong<<<<<<<


>>>>>I understand what you mean, I had an amino with my second pregnancy
(Mark) with the idea that I did not want to do the experience of Rebecca 
twice........this does not mean I don't love Rebecca, nor that she is not a 
happy person. I think that each must decide for themselves what they can manage 
to do. I think about it often as I am a RN and for the last year have been in 
the level 2 site of our copreratin,presently working in L&D and going to the 
mother and baby floor next week. Often there are genetic terminations and while 
I don't have issues about people chosing to end a pregnancy due to a genetic 
issue my concern is that while I can be supportive cause I know the hard road 
they would walk with this child I wonder if they have been given the accurate 
info to make the best decision. And this not knowing what they have been told 
esp since most of the medical field don't really know the realities of living 
with a disabled child nor the real truth of how long some of these kids live 
leaves me with the feeling that I would rather not be involed. As I
 feel any discussion should be
before they decide to terminate.<<<<<<<<<

My husband had experienced this all 17 years ago when his son JT was born 4p-, 
Wolf-Hirshhorn syndrome. The worst you can immagine happened with him, 
including John finding him already gone 3 years of age. With our amnio, I had 
that choice taken away when everyone gave us thumbs up. I don't want Genevieve 
becoming a case study because of the rarity in karotyping, as JT was done, nor 
unnecessary testing on 'just to see' or a 'hunch'. I am now for genetic 
testing/counseling and encourage it. 

Pamela ~mom to Faith 4 and Genevieve, 13 months old : ) 
(46,XX, dup inv ins 5 (q31.3; q35.1q34), missed amnio) 
 










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