Dropping/seizures was god bless us all

[Guest guest]

<< Our newest problem is

that it appears that Kody is having " drop " seizures. We stopped the Reglan

thinking that could be the cause of his falling down, but, even though they

have slowed way down he is still doing this about 3 times a day. We have an

appointment with a neurologist and for an EEG in two weeks. >>

Diane,

Would you keep me posted on whatever you find out about this? Jamey started

" dropping " a week before he turned 13. After EEG, EKG, and MRI, the

neurologist told me it was puberty and autism. The only other thing they

could figure out was that it was his blood pressure dropping. He was put on

a low dose of amnitryptaline (sp?), but that didn't help. In the beginning,

Jamey was dropping 3 times every 5 minutes. Like Kody, it slowed down to a

few times a day. Make sure you keep Kody in a padded area where he won't

bump his head.

In retrospect (2 1/2 years later), I probably would have had his reflux/acid

levels checked. Jamey's present immunologist feels that this had something

to do with it. Have you ever noticed Kody arching his neck or holding his

breath? Maybe the severity of the GERD has changed? Jamey cannot be on

Reglan either because of the neurological side effects. One other thing I

would have done: if the EEG comes back normal or slightly abnormal, I would

advocate for a longer, possibly a 24 hour EEG.

I know how scary it is to watch your child keep falling. Being on your toes

100% of the day is hard and exhausting. My thoughts and prayers are with

you.

Take care,

Billings

mom to Jamey (15), autism, CVID, asthma, chronic viral infection, GERD,

dietary entercolitis.

[Guest guest]

, thanks for your input! I will keep you posted on Kody. He fell

again today, once when I was watching and then once outside (he fell and hit

the picnic table). I feel worn out watching him, as if I wasn't vigilant

enough watching for signs of illness, now I have to watch and make sure he

doesn't hurt himself! And his new school teacher just doesn't get immune

disorders and the problems associated with it and as a result more or less

treats me like an overprotective mother and I can tell when I told her about

the " dropping " that she was just humoring me. Just one more frustration! How

is your son doing now? Still falling?

Diane, Mom to Kody age 4, IgG sub. 2 & 3, asthma, GERD