Turner Syndrome maybe epilepsy?

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Hi,

We're new here, but since I've been searching around tonight... I've found that more than 2 seizures puts one in the category of epilepsy. So, here's hoping that someone can enlighten us. Elizabeth is now 2 1/2. She has a very unusual karyotype with lots of chromosomal rings. She was diagnosed with Turner Syndrome through Peds. Neurology after they explored a reason for her developmental delays.

Anyway, on to the seizures. Feb. 2004, she had a couple of absence ones lasting about 15 seconds or so. Oct. 2004, she had two big seizures - one lasted 30 minutes, the other 4 hours later lasted 20 minutes. We were on the way to the ER and the first one stopped, so we went back home. The second one, my hubby took her in (I had my GS troop sleeping over) and they did a CAT scan - normal. No EEG person was on duty (Columbus Day weekend). These were both a bilateral rhythmic jerking at the elbows & knees - like one of those wooden puppets when you pull the string. She never got stiff & jerked. She only fell asleep after the second one because it was almost midnight & she was going for a car ride. She did make some kind of sound & it looked like she was trying to stop herself. She had another absence two weeks after this. Nothing since until last night - Mar. 05. She was going to sleep after a long day - just after midnight - & she started twitching. This one lasted about 15 minutes. She would put her arms out partway & they would jerk. All these jerks (in Oct. & last night) were once with just 3-5 seconds between them. Her legs didn't move as much as the ones in Oct. She could tell us her name & smile during last nights. We taped her.

Her neurologist had us get Diastat after the Oct. ones to have on hand. We didn't use it. He mentioned if she had another one, that he would put her on meds. 'for years'. She is also supposed to be getting on growth hormone for years through Endocrinology. I'm scared to tell Peds. Neuro. about the one last night. Does this sound familiar to anyone? Does she need to be on meds. if they are 6-7 months apart? Any advice please? Is this epileptic behavior?

Thanks,

Lori, mama to Elizabeth

Comments

RE: RE: Turner Syndrome + maybe epilepsy?

Submitted by loriva8 on Sun, 2005-04-24 - 08:18

Hi everyone,

Just wanted to check in & thank you for your replies. Still trying to do lots of praying & of course, research to find out more. Honestly, probably still in some denial. My husband is for sure as he won't talk about it or do any type of research or even read what I print off. No seizure activity lately. I have definitely been watching her to make sure she gets enough sleep. I have only found one other person who has a child with Turner Syndrome and seizures - they live in Ireland - & her latest seizure was 2 years ago- never on meds. Still no info on the combo of growth hormone (will probably be Nutropin) and either Keppra/Capra? or Tegretol. It is scary to think about having two different powerful meds. going on in your little one at the same time & over several years.

Does anyone know if there is any research on to 'cure' epilepsy or is it just something that will forever be there? How do epileptic children handle school or more importantly, how does the school handle them? Are they on IEPs? We homeschool - have already graduated 3, but I'm wondering...

Thanks for being here & I hope everyone has a great day!

Lori, mama to Elizabeth 2 3/4 :)

Hi everyone,

Just wanted to check in & thank you for your replies. Still trying to do lots of praying & of course, research to find out more. Honestly, probably still in some denial. My husband is for sure as he won't talk about it or do any type of research or even read what I print off. No seizure activity lately. I have definitely been watching her to make sure she gets enough sleep. I have only found one other person who has a child with Turner Syndrome and seizures - they live in Ireland - & her latest seizure was 2 years ago- never on meds. Still no info on the combo of growth hormone (will probably be Nutropin) and either Keppra/Capra? or Tegretol. It is scary to think about having two different powerful meds. going on in your little one at the same time & over several years.

Does anyone know if there is any research on to 'cure' epilepsy or is it just something that will forever be there? How do epileptic children handle school or more importantly, how does the school handle them? Are they on IEPs? We homeschool - have already graduated 3, but I'm wondering...

Thanks for being here & I hope everyone has a great day!

Lori, mama to Elizabeth 2 3/4 :)

RE: RE: RE: Turner Syndrome + maybe epilepsy?

Submitted by mommy2kyra on Sun, 2005-04-24 - 10:43

Hi Lori,

I'm glad to see that you've begun looking into epilepsy, hopefully, your hubby will come around soon. That must be difficult for you to have him withdraw so much. The sooner you get your daughter on some meds, the better...really. I know that it's a scary prospect, med side effects, but it's much better than having seizures! PLEASE don't wait for your daughter to have another before puting her on meds. I didn't have epilepsy until I was 20, so I can't speak from experience on how childhood is affected by AED's.

I do know that there is ongoing research to better understand epilepsy and find a cure, but unfortunately, the cause hasn't caught the eye of general public. If some big celebrity were to express deep interest in the cause, you can bet they'd have a lot more funding for studies!! Sad, but true.

Contact your local Epilepsy Foundation...they were a great resource for me when I was diagnosed. They have videos; which go over types of seizures, first aid, social aspects of epilepsy, etc. They also have support groups, and a lot of activities for children with epilepsy. I highly recommend them!

Heather

Hi Lori,

I'm glad to see that you've begun looking into epilepsy, hopefully, your hubby will come around soon. That must be difficult for you to have him withdraw so much. The sooner you get your daughter on some meds, the better...really. I know that it's a scary prospect, med side effects, but it's much better than having seizures! PLEASE don't wait for your daughter to have another before puting her on meds. I didn't have epilepsy until I was 20, so I can't speak from experience on how childhood is affected by AED's.

I do know that there is ongoing research to better understand epilepsy and find a cure, but unfortunately, the cause hasn't caught the eye of general public. If some big celebrity were to express deep interest in the cause, you can bet they'd have a lot more funding for studies!! Sad, but true.

Contact your local Epilepsy Foundation...they were a great resource for me when I was diagnosed. They have videos; which go over types of seizures, first aid, social aspects of epilepsy, etc. They also have support groups, and a lot of activities for children with epilepsy. I highly recommend them!

Heather

RE: RE: RE: RE: Turner Syndrome + maybe epilepsy? + 2 question

Submitted by loriva8 on Sun, 2005-05-29 - 08:22

Hi Heather,

I have found that our community has an Epilepsy Support group, but they seem to be adults or spouses with epilepsy. How do I find out about a group that relates to children? How do I know if we fit in? Any tips? Elizabeth is in our county's Early Intervention program through which PT comes to the house. Do you think they would have contacts?

Questions:

1. Should I be putting 'epilepsy' in her medical info? I keep a Word file of all she's been through. She's had seizures like described above but isn't on meds. Two episodes is considered 'epilepsy' from what I've read, but is that enough for ="ME"= to put it on her health history? I hope I'm asking that right.

2. She was diagnosed with no hearing in the mid-range in her right ear last week. The upper frequencies and lower frequencies she can hear. Does epilepsy interfere with the hearing process?

Thanks, everyone, once again. I check back every now & then & of course, read the digest.

Have a great day,

Lori :)