ProEFA and seizure disorder

May 8, 2002

Hi all. I am new here and just a had question for anyone with a

similiar experience. I would like to start my daughter on ProEFA. I

am curious to know if anybody has a child with a seizure disorder and

is using proEFA. Has anyone heard any discrepancy with the two? A

little background of Sammy, in a nutshell, is that she was born full

term and SGA. 5# 4oz's and 16 1/2 " . She has been in therapy since

she was 3 months of age because of the risk of being developmentally

delayed due to her med problems and her high muscle tone. Due to

aspiration she was tube fed until 5 months and then had surgery for

severe trachealmalasia. I thank God for her early intervention and

give much credit to her PT, OT, and SLP. Unfortunately she is still

pretty delayed and has no words. She is now 22 1/2 months. She is

still small 21 1/2# and 30 1/8 " . Her greatest strength being gross

motor skills and weakest being speech and communication in general.

She didn't have any seizures until 19 months and had 3 grand mals in

24 hours. After being treated at Children's Mem in Chicago, she was

sent home on phenobarb. After 2 weeks she was taken off the med for

an allergic reaction and is still on no meds, nor has she had a

seizure since the only 3 on valentines day. Her geneticist is pretty

sure of some genetic problem, but of course, no DX.

I would love to start her on the ProEFA, but need to know that it is

okay with her med problems. I am pretty sure that she has oral

apraxia just from the checklist at the website. Most of the stuff on

that list is her besides a few. So, due to her nonverbal status,

maybe we are looking at verbal apraxia. I know that oral apraxia can

be diagnosed much sooner.

Any input would be greatly appreciated. This looks like a great

place to yak about our kids.

God Bless,

Amber

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