Need Help/My story

[Guest guest]

1st I want to say thank you!!! Everyone who replied had such good advice and

seems to having gone through the same things I am. I cried reading all your

stories so I thought I would share mine!! So here it goes,,

I have a 7 month old baby boy named Sullivan Dunn. He was born on Feb.

2, 2009 at 7:47a.m. (by c-section he was breach) 6 pounds 10 oz and the most

beautiful thing I had ever seen. He was perfect in every way or so I thought.

On April 30th 2009 Sullivan starting doing something very strange. His face

starting twitching, first his eyes and then his checks and then it would stop.

Being a first time mom I wasn't sure if this was normal. I told myself it was

nothing and to not be one of those moms who makes a big deal out of nothing.

But then it happened again and again and again and then his arms and legs went

stiff and he started screaming. I knew right away it was a seizure, I used to

work with special needs kids who had them all the time. So I called our

pediatrician and talked to the nurse and of course she didn't believe me that he

was seizing and told me to bring him in a 2pm and the doctor would take a look

at him.

When I got to the doctor's office Sullivan had already had about 10 seizures and

then had 2 more in the waiting room and then one in front of the doctor. I was

completely freaked out!! The doctor looked at me and said, " stay calm I'm

calling 911 " yeah right. How the shit can you stay calm when someone says

that. Anyway the ambulance took us to St. Louis Children's Hospital and from

there my day just got worse and worse. I can't even go into what all happened

in that Emergency Room. I was crying so hard and was so afraid, most of it is a

blur. I do know they gave him lots of shots, put him on oxygen and stuck him

about 7 times trying to get an IV in and finally they did and he was out.

Then the doctor's turned to me and started asking me all these weird questions.

Did I have a normal pregnancy, did I use drug, did I drop him, had anyone knew

watched him. It was crazy!! Then they said, " We need to do a CT scan to try

and figure out why Sullivan was having Seizures. " Ok!!

I went in with him and held his tiny little hand while this big thing was taking

pictures of his brain. It was over and done in about 10 minutes. The ER doc

was in the room viewing the pictures as they were taken. When he came out I

said, Well what is it? What's wrong? He looked at me in a very strange way and

said, " there is no evidence of trauma. " No, really!!! So what's the matter?

He looked at me again and said, " the CT scan was abnormal and I am sending it to

the neurologist for further review. " What does that mean abnormal? Is he ok?

What is going on? All the ER doctor would say is; this is not my area of

expertise and you'll have to wait and speak to the neurologist. Thanks for

nothing is what I was thinking!!! Tell me something you jerk. Nope nothing

except your son has to spend the night in the PICU (pediatric intensive care

unit) and you cannot stay in the room with him. I couldn't believe what was

happening nor could my husband. We spent all night out in a family lounge

worrying about our 12 week old baby.

The next morning at 7am we got to go into his room and he was still sleeping.

HE looked dead and it freaked me out. I just started balling and I couldn't

stop. I wanted to know what was wrong with him and I wanted to know now!!!

Finally Dr. P big bad neurologist walks into the room says I heard Sullivan had

a rough day yesterday! DUHHH!! Then he said, I've had a chance to review his

CT but I do not feel comfortable making a diagnosis we need to do a MRI. Why

the hell didn't you do that yesterday, but whatever!!! So more and more

waiting… They moved us to the neurology floor and I was able to stay the night

with him but it wasn't until that next morning that I found out what was wrong.

Your son has a congenital brain malformation call polymicrogyria. What? What

is that? What does that mean? He went on to tell us his brain didn't form

right and blah blah blah…. I have never cried so hard in my whole life. My

husband didn't shed a tear he just sat there like nothing had happened. And

then he said, so what does this mean for Sullivan? The doctor looked at us and

sighed and said there is really no way to know at this point. He will have

seizures and developmental delays to what extent only time will tell. I will

bring you some reading information on polymicrogyria that may help you better

understand. It didn't help and I am still confused.

I don't understand how this happened or why. I don't understand what this means

for my son and his life. I don't understand any of it. My husband never talks

about it. He tells me to stop crying everything will be fine. However, I don't

think he is right. Sullivan will be 8 months on October 9th and he cannot sit

up, roll over, hold his bottle, grab at things or even really look at me. I

don't know if the seizure medicines help him or make him worse. All I really

know is that I'm scared and sad and I have no one to talk to. So I will be

email all of you, I hope thats ok!

We started working with PT, OT and a Developmental Therapist I'll let you know

how that goes. Thank you so much for letting me talk about this. It helps so

much, thank you!!!