hello child with seizures

[Aggie23]

Hello My name is Aggie and i have a 9month old son who has had seizures since he was 2daysold and yes he is my first. he is on phenobarbital for now.....I just need someone to talk to about all this.

[Dutch mom]

Welcome Aggie,

I have a son (9) with a nasty epilepsy since he was 1,5 years old.
What type of seizures does your kid have? Does the phenobarbital help to control them somewhat? I'm also interested to hear how your child is developing.
Please do use this group to talk to, we're here to listen and to help you as far as we can. I'm a mom who knows how you feel andÏ'm here to help you a bit to deal with this.

[Aggie23]

he has the myloclonic. petite mal and grand mal
so as his doc says
the phenobarb helps unless they lower lower than 6ML
so far his development is okay......he can almost walk crawls all over does sign language and can semi talk......just one word at a time......
he goes in for another EEG and then they are going to decide whether or not they are going to switch med........

[Meetz1064]

as to why they would want to change the med already if it's working. Or IS it working? Is he still having seizures at all?

I was on phenobarb myself from the age of 18 months to 19 years...and Dilantin, too.

[Aggie23]

its working...but he still has the just not as many

[RobinN]

Hi Aggie - Welcome
You have come to a safe place to let out your frustration, worries, find a friend, read a joke, listen to some good music, and read up on all the latest and greatest research and trials by other members.

Hug that little one for me. Sounds like he is developing on a good course. It is rough have a teenager deal with this, but I can't imagine an infant. Wish I could give you a hand occasionally. Or better yet, I wish Rebecca could.

[joan]

Hugs and welcome * Youve found a great place. I have 2 teenagers as well with E and I am so sorry to hear about your son. My daughter has myoclonics as well, then tend to be difficult to deal with. Its a rough time. Hang in there. I hope all goes well with your Drs appointment*

joan*

[Belinda5000]

Hello Aggie,

welcome to the board and I'm sorry about your 9 mth oldson having seizures.
I've had seizure's since I was 2. I'm glad the phenobard helps him.
The ppl here are good talk to .

Belinda

[LivingFruity]

Hi Aggie Welcome to CWE! It's hard to watch my 7-year old seize, I couldn't imagine going through this with an infant. You've found a wonderful place for support and encouragement. Make yourself at home and have a look around. There's so much information here in these forums, and a lot of inspiration as well. We're really glad to have you here

[Bernard]

HI Aggie23, welcome to the forum.

It's hard to watch a loved one experience a seizure. Give that boy lot's of love. Babies are very resilient.

[skillefer]

Hi Aggie ! Welcome to CWE. Feel free to ask questions, vent in the padded room, or just chime in. Also, there's some great info in the library here at the site.

Here's my professional opinion (I'm a special ed. teacher...) give him lots of love and limit his TV. TV is not really good for kids...it tends to make them more likely to develop things like ADHD by giving them a constant source of changing stimulation....and that includes hearing it in the background. Becuase phenobarb can effect IQ, make sure that you spend lots of time talking to him and playing with him.

[Aggie23]

thank you every one for making me feel welcomed
sorry i havent been on ive been real busy with him...(perks of being a single mom i guess lol)

how is everyone