a new member from NJ

[Guest guest]

Hi

My name is and I live in Essex County. I have joined this

group because I need to get as much support and information regarding

apraxia. My son 6 years old, has apraxia. We noticed 's

speech delay when he was 2 and he started receiving early

intervention 3 months before turning 3 years old. Unfortunately,

's speech issues were put on hold. When he turned 3 he started

having seizures. He has severe epilepsy. After 7 months of being in

and out of the hospital and trying many medications, we started

on the ketogenic diet. To make a long story short, after almost 3

years and no medication, I am happy to say that his seizures are

controlled with the diet alone. My focus for was always the

seizures first, but now that he is doing well, we have to conquer the

speech problem. Our neurologist, who is at Children's Hospital in

Philadelphia, is very concerned with his speech. She told me she

cannot understand him. I can understand him most of the time(but I'm

his mother) but their are times that I can not and he gets very

upset.

I am having him re-evaluated for speech through his school. I was

told by the speech therapist that she would not be able to diagnose

him with apraxia for law reasons. I asked them why and the child

study team could not really give a reason. I thought this was odd.

Then the case manager said he thought that would have to come from a

neurologist but didn't say why. Has anyone ever heard of this?

I was hoping by joining this site, I could connect with other

parents, who have gone through this journey and get support and

advice with dealing with the apraxia and also with the school system.

Thank you for allowing my to join this group. Any input, is greatly

appreciated.