Wednesday, November 10, 2010

Rough Starts...and POOP. yup.

I have so much to type but I am so scatterbrained right now!
$500 Dollar Grant from Hartford Childreans Hospital to help pay for madies ketocal!! I think that will give us enough to see if the diet will actually work!! :D! I am overwhelmed that this has been given to us. Just WOW.Blessed and Blessed.
Insurance continues to say that its not nessesary for madie. DO they have kids with seizures too? Doubt it.
Sad news that madie had a bad seizure today at school and I had to go pick her little self up. I was almost in tears in the car and got her home and by that time it was time for some pediasure so she ate one of those and fell asleep for some time. Has been a little off today but otherwise pretty happy. Poor baby girl.

I called Nuerology concerned about the fact that I am having alot of trouble getting ALL 10 oz of her keto bottles down the hatch...and before we began the diet her poops began to smell super bad...Ok now poops smell bad.... But not burn your eyes a fresh box of moth balls! and ammonia....super potent.
I cannot blame the diet cause we saw this before we started on Sat...and we arent even fully into it yet!
Med Realated? Liver Related? Gosh that is my hunch and its scary. Hoping to hear back from the Pediatrician tonight or tomorrow so I can get madie and a poopy sample to them so they can test and see what the heck this kid is pooping. aside from nasty pellets from her depakote sprinkles.
I know its gross...but heck if anyone who has been on the sprinkles and had these poops and I can let them know how madies came back.
I was told by Neuro to just keep her at 2 keto bottles a day for now and to not increase till we find out what is in the poo. Yup. As far as trying to get 10oz down the hatch well its getting better than day one...8-9oz can get down for now.

Aside from that her mood has been very fussy the past week er so. Clingy as can be to mama...cries when I put her down or walk past her and dont carry her. Sad at school and happy when I get her in the car..a regular homebody she is. Its tough when I get the grumpy reports from school and when I get her home she is FINE! *sigh*
Even after todays seizure I brought her home and a few hours later you would never guess that she was so off this morning. Still bringing her in tomorrow with hopes that the day goes better. Hopefully we will get in the afternoon to the pediatrican. as well.
I am still pretty on edge about this diet and dunno how in the world I will pull it off IF it works..
Hope everyone has a great weekend and Ill keep ya posted. Time to get the lil stinker in the tub. :)

1 comment:

blogzilly said...

Definitely sounds like a roller coaster through Turdville. Hope it helps the seizures though.