Just also heard back from Hartford Neuro...
THIS IS MY FRUSTRATION: Ok, they have a ton of tests results from Detroit explaining what type of seizures she is having and her PET scan results and her 24 hour EEG etc etc and Madie is STILL having seizures...Ok ok so I meaning ME suggested that MAYBE we change her Banzel..get her off. OFF... and try something new..say..that may work and not make her so sleepy and a tad more hungry...
I ALSO asked a million times to test her for RETTS...she has at least 5 symptoms of Retts and I have pushhed for that dang test for months!!and in fact the test they are doing now that we are waiting for is NOT including Retts..(doing a CMA Chromosome test..(see former post for explaination of it) SO anyhoo I am asking them for a possible med change..MY IDEA> not the doctors. and that never goes. Like seriously ya have to fight for it and then when the doctor himself finally says "hey,maybe we should change the meds" THEN you get results. WE are speaking for our childrean! US! These guys dont live with this. They dont know how these meds make people. yeah..get the kid on like 500mg of this and that and when its still not working lets increase.! Well ya think if it was going to work it would have worked already. Ok so Madie is NOT on 500mg of anything but Im just sayin.
SOOO the suggestion from the doc?
Decrease her Banzel by half a tab.
DECREASE?? Ok are we weining her down or just lowering and watching seizures get worse?>?
There are days where I just become numb to this...Maybe this is the way Madie will always be. Developmentally Stuck. Seizures and Stuck.
There is so much unconditional Love for my Madie and everyone who meets her just loves her and no one has judged her or me for any of this. She is a happy little girl. I just KNOW that she can be better! I just know there is that little girl in there...albeit delayed but she is in there and she wants to stand on her two feet and pull up up up to big girl stand and she wants to tell us what is going on but she just cant.
Can I please read that contract of Motherhood again??
Oh can I also say that whomever invented this time change thing needs to be beaten.
Madie is so whacked out! Earlier naps, later wake ups in the AM..later bedtimes...Im so confused! I do enjoy the sleeping in for sure..but whooooo came up with this!!
Anyhooooo I guess today I cant complain as temps are going to rise this week upwards to nearly 70! OMG that alone is putting me in a good mood...fresh air just brings me to life!
Tomorrow I am hosting St Patricks Day and Ohhhh I got enough corn beef to sink a battleship!! Will be cooking it those pots for nearly 5 hours!! MMMMM!!! Quite a few family members coming on over for some food so it will be a blast :)
Hope everyone is well. SOrry for the venting. Just feeling so stuck!! ya know! like why hasnt anyone come up with a better plan for my sweet girl. :(!!
Was also throwing the idea of Vigabatrin as well...and Detroit recommended Clobazam..any opinions on those??
((hugs))
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