1st time and looking for info

February 12, 2002

This is my first time on this site. I had been referred to it and

encouraged to share my story to see if anyone has a child with the

same type of problems as .

was born a healthy 10lb. baby and developed normally up to 19

months. She was a little slower for some of her milestones but with

her being my sixth I was never concerned as all my childern were

different ages for different milestones. At 19 months(Dec.2000) she

had her first seizure and it was limited to her rt side(lasting

approx. 45-60 sec.). Her CAT scan and MRI were normal, her EEG show

spiked activity on left side of brain. The Ped-neuro said at that

time they would be hard to control. She has since been on

tegretol,sabril,valproic acid,phenabarb and now she is on Topamax.

She has never been completely controled but the seizures are limited

to when she is sleeping with an average of 5-6 a day. has

Partial Complex Seizures and they are not limited to the Lt side of

her brain anymore as the last EEG showed. Her last MRI(which was done

11 months after her first one)showed atrophy of the brain.

About 2 months after starting on the drugs she developed a reflux and

has been struggling with it since. At almost 3 yrs of age she weights

just over 19 lbs. She has been in hospital several times because she

was not keeping anything down. The doctors are talking about doing a

fundoplication and inserting a G-tube.

Developmently she has gone backwards, mentally at a 6-9 month level,

physically she was doing well until Dec.2001 when she developed

stroke like symptoms on her Rt side. Her last MRI was done following

this development and no cause was found. She has since started moving

her arm and leg but has yet to get back her voluntary muscle control.

In Dec.2001 she was on Topamax,Dilantin(for only 2 weeks),Maxaram and

Zantac. When developed the stroke like symptoms I was told to

stop the Dilantin, which I did, but I also stopped the Maxaram(as it

did not seem to help her at all). About 2 1/2 weeks later(and after a

round of antibiotics) she stopped spitting up her food. That lasted

about 2 weeks and now she is back to where we were before.

I have been seriously thinking about the diet but did not think

would do well with it because of her reflux. Has anyone had a child

with something simular to ? This all has been a real challenge

and I look forward to some replies.

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