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Turner Syndrome maybe epilepsy?

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: Turner Syndrome + maybe epilepsy?

Yes no matter what, one, two, three or hundreds of seizures, still need meds. I know it is a hard thing to do, but it could help her in the long run. If you gave her meds, possilbe it will do away with the seizures hopefully. You dont want her hurting herself because of them. I know meds can be an issue too, but it is safer for her.http://health.groups.yahoo.com/group/EpilepsyApproach/Lisa

RE: Turner Syndrome + maybe epilepsy?

Hi LoriWe are very new here and still reding all the post but your caught me because you are wondering about medicating,VERY scarry and Joseph has only been on Depakoe for 2 months but I agree your little girl needs to be on meds and your dr. need to be told.  We said no with the first sz and was slapped into acceptenc with the 6 in a 27 hour period and his sz havee stopped with only 2 febrile since because of ear infection. Joseph has r22 mosaic with speech delay and motor delay a severe sensory issues. We really dont know any thing about this but the med issue is the first thing to get through,that much we do know.Good luck to you and Elizabeth,and just keep reading here on this site and you will be amazed at how informed you will become and with that brings comfort to your heart.Kathymomma to Joseph 6 r22 mosaic  

RE: Turner Syndrome + maybe epilepsy?

Lori,My heart aches for you.  I too have a little guy (4 yrs) who was just 3 when his Epilepsy started.  When my husband and I noticed the absence seizures, we were both adamant that we would not give our little guy any medications.  However, after we saw the Neurologist, he explained that we need to take care of the seizures and stop them, if possible, and we would have the best prognosis. Anyway Zachary is on Lamictal and hasn't had a seizure since November (he was having multipule seizures daily).  I would recommend gathering all the information you can on the medication, know all side effects that could possibly happen and know what your looking for.  If you are informed, you will know immediatly if she starts developing a reaction to the medication.  You will be watching her like a hawk, but it really was the best thing for our son.  He is seizure fee and my hope is that you will have the same experience.This website has a wealth of info on all the different medications out there and how it effected different adults and children.  Also, when my son's Neurologist introduced Lamictal to us, he told us very casually that a rash was the only side effect so watch for a rash.  He didn't explain to us that the rash could be very serious and I should take him to emergency should one develop.  He seemed to downplay the serious side effects of the drug and I would have liked to know the worst case scenario, so even thought your Neurologist gives you the pos and cons, I would reccomend doing your own research as well.  My son never developed the serious rash, but his eczema seemed to flair up and I thought it was the rash, but it wasn't.My prayers are with you and your family.  Best wishesWendy

RE: RE: Turner Syndrome + maybe epilepsy?

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?

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

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 :)