Holey Shmoley! what a response!
Well this is where we (I) are at now.
Blood work came back just fine with levels of 79..
Doctor instructed that we go up on the V.Acid for the Tonics and give it 2 weeks...
Ok well today I saw 3....dunno if that is progress or what...eh...
Got a call back from the Nurse at Nuero after I left a messgage asking what Dr D would think about putting Madie on this Keto Diet...
Well she claims that we discussed it and i declined to go thru with it...Ok well we did mention it and Madie being such a horrible eater I was not quite sure we (I) could pull it off...
Ok Im just going to list what I am thinking...
1. Ok so we have tried alot of meds and this diet would get her OFF or even VERY reduced in her med....AWESOME and despite the fact that seizures could return she would be a different kid...meds suck...I can tell when her meds kick in at times..:(
2. Ok so what if BIG bad seizures come back and knock her out on a daily basis??...like Im talking Tonic Clonics! havent seen one of those in over a year! Just couldnt bear to see that. I have read that there is a "sugar free" version if V.Acid that madie could take...
3. She is so sleepy...:( I know there is a little girl who despite being delayed is just dying to come out...I want to say that IF we see success from this get her off the Clobazam that has made her into a grump from day 1.. But then would drop seizures return???? She is very on and off...one sec she is fine and next she is grumpy..moody
4. Its alot of work. I got enough work around the house to try to maintain...I got dust bunnies and dishes on a daily basis! Laundry that takes 3 days to compleate....WHere is my personal chef and housekeeper when I need them!
5.Preschool has been going rough...she is tired she is fussy she cries...she just wants nothing to do with it...this all beginning when Clobazam came into the picture I am so convinced!
6. Nightime is still her time...right now as I type she is making all kinds of happy noises and laughing...WHY?? why is AM so much different from PM?? AND if I can get her to nap in the middle of the day that is KEY.
7.I never expect the best from anything...after nearly 10 drugs...geeze..to actualy see Madie compleatly seizure free and low on meds?? geeze... seems like a far fetched fantasy...the odds of seeing a Unicorn in my front yard!
I dunno folks.
Nurse from Neuro said we can get into see the Dietician in June...June 9th I think she said... I just wait to hear back from her...\
I guess they will go over the ins and outs of the diet and see what we think and assess madie to see if she can really pull it off...if I can pull it off....?
Well I guess that is all for now...
Hubby and I are going to turn off this Miserable Mets game and watch some quality girlie programing..LOL
Illll keeep ya posted...
Did anyone see that SNL with Betty white?? OMG hysterical!! GO to Hulu.com and watch it!! :D
Hugs
Me.
1 comment:
There comes a point where the decision becomes "why not?" rather than "why?.
We reached that point a few months ago and start the diet on Monday.
I hope you get the information you need from the dietician in June. In the meantime, pick up a copy of "The Ketogenic Diet" I think it is by Freeman from Johns Hopkins. And if you have enough tissues in the house, watch "First Do No Harm" starring Meryl Streep.
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