Re: Harriet

[Guest guest]

Harriet,

We have always had sleep problems with our son Jorden. He hates to sleep and

we would love some. We thought Jorden might be having trouble breathing.

That's why he would wake up all night long. So we had a sleep study done.

During the study they noticed that he was having small seizures, but alot of

them. They said that he would start into rem sleep and have one and would wake

himself up. We also had put a baby monitor in his room so we could make sure

he was alright. Then we noticed that we would hear him giggle. When we

discussed it with the neuro he claims that is a form of a seizure. They call

it the " giggle " seizures. Some of my son's sleeping issues l believe are his

seizures. They put him on phenobarbitol at first only at night. We would give

him 2 tsp at bedtime and it seemed to help at first!! Not now, some nights he

is up all night. We are now at the point of being so tired that he put him by

our bedroom door and turn on the tv and sometimes he will lay in his bean bag

chair and sleep or watch tv. Jorden doesn't walk or crawl or roll over on his

own so we don't have to worry he is going to get into anything.

I also don't like giving Jorden medication. With the pheonobarb it makes his

very sleepy. My son also takes vitamins and zantac for acid reflux. I know

with acid reflux it can cause them to wake up alot too. With Jorden that was

one of the first medication he was put on was for acid reflux and it seemed to

help. I have also noticed the older Jorden gets the more things are being

noticed. We found out that Jorden had PMG when he was 10 months old, he is now

27 months old now.

Im happy to answer any question you have.

Best wishes,

Marilyn Jorden's mom

> Marilyn, I was reading your recent post and

> have some questions if you don't mind. I have

> a 18 month old with CBPS. He had an eeg in

> Aug. which showed no seizure activity. Why did

> you have the sleep study done, did you suspect

> seizures or was there something else going on.

> Were the seizures disrupting his sleep? Dillon

> has always been a terrible sleeper and it has

> gotten worse since his last hospital stay. I

> assumed that it was a separation thing because

> we were always holding him in the hospital and

> he became the " s " word. He is ok as long as

> you are holding him and as soon as you lay him

> down, WAAAAAAHHHHHHHHH!!!!!!!!! We are at our

> wit's end. Maybe it is seizures keeping him

> up? I hate to medicate unless absolutely

> necessary. Were his seizures only happening at

> night or are they constant? I apologize for so

> many questions but am so concerned about Dill.

> Harriet

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