Anyone with epilepsy?

Dhampyr17

I'm stressed out and I am trying to stay calm because I'm 11 weeks pregnant and I don't want to cause issues with this pregnancy because I'm so stressed out, but it's been a roller coaster ride since the beginning of March.

 

A little history:

 

My daughter is 2, born in January, in March she was hospitalized with what they thought was a very bad case of the stomach flu. They decided to put her on an IV and so, whenever they do this, they automatically run a CBC. Well, it came back with extremely low blood counts--they thought it was wrong and stuck her again and took a new count, they came back the same.

 

She was then taken to Sinai Children's Hospital where she received a blood transfusion after more sticking and prodding. Her counts were at 5k for red, 1k for white and 106 for platelets.

 

After a bone marrow biopsy, leukemia was ruled out (scary 15 hours as we were told that she had enough leukemia like cells to be leukemia, but not enough to definitively say, so they had to send it out to a special lab, which took another 8 hours).

 

Pretty much, she stopped producing blood for an unknown reason. They call this Transient Erythromblastopenia of the Childhood and usually once it's gone, it NEVER comes back.

 

We spent a week at Sinai and she was finally released, but we had to return every week to watch her counts and to give her another transfusion when they got too low.

 

At the very end of April, she was finally discharged, she has begun to produce her own blood and her counts were in the low, but normal range (normal for children is between 22k and 24k total).

 

We noticed throughout this whole thing that she would have muscle spasms sometimes, but with the TEC going on, we didn't pay much attention. But only about a week after being discharged from the hematology department, we were noticing the spasms were getting worse and more frequent. It went from once every few days to almost every day to 5 to 10 times almost every day.

 

We just saw a Pediatric Neurologist at John Hopkins and now she has to go in for an EEG (You guys don't even WANT to know what I went through trying to get her an appointment with a pediatric neurologist).

 

We won't know anything concrete unil the EEG is done (and possibly not until the second or third one is done if they don't see anything on the first one), but I'm just so stressed out over all of this.

 

Has anyone dealt with this? Especially in young children? How do I keep her seated for almost an hour?

Lisa and Mickey

First {{{HUGS}}} What a scary couple months for you!

Collin doesn't have epilepsy, but they were worried about seizures at birth. He spent his first week in the NICU and had 3 EEGS. I know all about trying to get appointments with Pediatric Neurologists! Luckily for us, upon release from the NICU the drs there got involved and got him in quickly.

As it turned out for us, he had Benign Sleep Myoclonus which means basically none harmful jerking in your sleep. He grew out of it in a few months.

I think I would have to talk with either the pedi or neurologist. They don't have to be perfectly still, but they do need to be pretty still. At 2, as much as I would hate to do it, I think he would probably need sedation (although I can't remember if you can give it to them, not sure if it would mess up the results). As an infant, I held him the whole time. I am sure LO could sit on your lap, but I know Collin would never sit still that long. Perhaps ask the place you are getting the testing done when you schedule the appointment?

 DH did take video of him while he was hooked up for the EEG, just to show what it looked like hooked up. If you would like to see it get an idea of what it might be like, I'll get it downloaded and send you a link. 

 ETA: I do no several people with Epilepsy (one 21 yrs old, one 32 and one in her 50s). It can be scary, but once the medication is worked out, they have all had years and years between seizures. Most people would never know they had it!

Dhampyr17

If you don't mind, I'd like to see that video.

 

It's actually all set up, her EEG is this Monday at 3:30pm--we have to get her up at the latest by 7am and she can't take a nap.

 

They won't sedate her because they said the sedative can mess with the EEG readings, so she has to sit relatively still for about an hour.

 

They did tell us we can bring some toys, books and a DVD for her to watch, so we're thinking bring her favorite movie (Aristocats) and that should keep her happy for at least a half hour.

 

But I have NO idea what to expect, only that we have to wash her hair the night before and that it's going to be messy.

Lisa and Mickey

I'm glad they got you in quickly, that way you have less time to worry about it.

It sounds like they are used to dealing with kids so hopefully they have some tricks up their sleeves. Something that may work in a pinch is a smart phone. I know my son begs to play with my husbands all the time. We try not to let him often, but on occasion we do and it would keep him occupied for quite some time. I pinned a page with a list of recs for apps if you have one and would like it.

Here is the video. We had to get him up early and try to keep him up on the car ride there (not easy with a 2 week old baby). In the video he is already out because he was so tired. After they attached all the things (that's the technical term I'm sure ) the wrapped his head in gauze so that he couldn't pull at them as easily. He had already had 2 EEGS in the NICU but they weren't as long and didn't give enough info.

As much as the whole thing will probably be a pain, the good news is you will get some answers. For me, the not knowing is the hardest part. I feel like I can deal with a lot if I know what I'm dealing with. Good luck and let us know how things go!