12 year old newly diagnosed..scared

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nmgma00

nmgma00

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Hello. My daughter has a genetic disorder called Turner Syndrome. She also is being treated for OCD, ADHD. Last week she had a tonic clonic--waist up--at school. This was a first for us and I am scared to death. She was admitted to the hospital and had ct, mri/mra and EEG. Diagnosed with "frontal lobe epilepsy." She was started on tegretol. She already takes a bunch of other meds and I'm so afraid she will become toxic that I've asked to have a level drawn already this week. We cannot get in to see the pediatric neuro until March 25th! AHH. I don't even know what to do first--and I work in health care!! My child is a very self-sufficient little lady and has been staying home after school for a while now and during the summers as well. Now I have to find a "sitter again"?? I constantly am checking on her and afraid to EVER leave her alone EVER again. I wake up and watch her sleep for fear of her choking or aspirating. How do the rest of you deal with this with older children? I understand that she will not be by herself until this is all under control but, at what point do you say "ok,you can stay home for a little bit" and not have a nervous breakdown?
 
I'm so sorry -- I know how scary this must feel. I hope you and your daughter will get some answers and some relief soon. Don't be afraid to be pushy about seeing the pediatric neurologist sooner. Ask the office to put you on their cancellation list. And ask them for advice NOW -- about the meds, about monitoring your daughter, about figuring out the next steps.

I understand your worry about aspiration. I don't know if it will help, but you should know that it is a very rare complication of a seizure. I've had about 20 tonic-clonics, and it's never been an issue for me. And of course it's normal to be worried about an epilepsy diagnosis. It's a lot to take in, but eventually you'll get a better sense of what that will mean for your daughter, and things will feel manageable again. Don't worry about when you'll get to that point, just know that you will.

In the meantime, pay attention to how your daughter is feeling on the Tegretol (as I'm sure you are already). Do you have any sense of what may have triggered her seizure? Was she under stress in any way? Had she mentioned any unusual symptoms or sensations in the past? It's possible that her ADHD might be related to the epilepsy, and/or that the ADHD meds (which are often stimulants) may have played a role if she has a lowered seizure threshold.

Please feel free to ask questions here as they arise. CWE members are a great resource for advice -- and support.

Best,
Nakamova
 
Welcome. I have 2yr old who has been having "known" event's since 7 1/2 months old. He is also on Tegretol. I have found this board has given me great comfort, strength, support and helped me with a lot of questions I have.
Donna
 
It does get easier but not much

I too have a child with severe epilepsy but no know cause yet (2 years and counting) I almost lost her twice whilst having severe tonic clonics (38 mins) I still have moments I'm scared to take my eyes off her but at the same time I have to let her live as much of a normal life as I can. She wears an epilepsy awareness child's bracelet (eBay $6, amazing) and still does most things, I try not to let her see or feel that I'm scared as it only makes the situation worse. We are not afraid to make people aware of her potential seizures as its a part of everyday life and she doesn't need to be treated any different.

I don't know if that helps.
Blaze
 
thanks for the replies! my head has stopped spinning a little. my daughter just increased her dose yesterday and is having some dizziness. how long can we expect that to last?
 
Hi, Tegretol is NOT one of the 10 meds our son has been on, so can't answer that.

But, I wonder if you've seen this article on Turner Syndrome and Epilepsy? Seems that the vascular/heart issues that a lot of these girls have can affect the central nervous system.

http://www.ncbi.nlm.nih.gov/pubmed/2124799

Also...I was thinking about her age...12...and a lot of kids start having seizures or have relapses in seizures as they are entering puberty -- but, then...with Turner Syndrome...puberty is all out of whack, so, not sure if that's a factor or not...
 
Welcome to CWE. I also have a daughter diagnosed with E. She was 14 at the time of diagnosis and also was very self sufficient. She was babysitting her brother and cousins and did many things on her own. I understand and remember the initial shock, questions and fears I had as a mother new to this diagnosis. I am hopeful you will get answers and reassurance once you visit the neurologist in late March. I know it seems like an eternity away! Until then, keep track of her triggers, her diet, sleep patterns .. everything. I was able to bring my notebook to her first appointment and it was helpful. Best of luck and welcome!
 
Chop..thank you for your kind response. I see you are in wisconsin as well. I know there are only a few pediatric neuros around. Do you like the one your daughter sees?
 
Hello nmgma! We did go to Children's Hospital in Milwaukee but chose to hold true to our idea of visiting a few places before we selected her neurologist. We had another visit lined up and ended up at the Regional Epilepsy Center at Aurora St. Luke's. Paige is seeing Dr. Sosa and we LOVE her! I know there is a minimum age for kids to go to the regional epilepsy center - I think 13. Where are you going for service? I can find out the name of the peds neurologist at Children's if you'd like - name was a favorite among those I spoke to.

Like I said I know there is an age requirement at The Regional Center but it is something to think about as your daughter gets older. Paige will not have to transition from one neurologist to another now.

Where are you in Wisconsin? We are in the southeast corner.
 
Hi! I have a 12 year old daughter with FLE also!! Would love to visit with you more. I know how scary it is. She was also diagnosed with ADD a few years ago but now I question whether the behavior was the first subtle signs of the seizure activity. I had taken her off that med prior to the E diagnosis for side effect reasons though. That lobe of your brain controls your behavior, personality, impulsitivity and concentration.
 
Hello. Ang is on concerta for ADD and it really seemed to help her a lot. So, I have a battle in my head going on about keeping her on all of these psych meds. There is no definite to these things which stinks...
 
chop456 said:
Hello nmgma! We did go to Children's Hospital in Milwaukee but chose to hold true to our idea of visiting a few places before we selected her neurologist. We had another visit lined up and ended up at the Regional Epilepsy Center at Aurora St. Luke's. Paige is seeing Dr. Sosa and we LOVE her! I know there is a minimum age for kids to go to the regional epilepsy center - I think 13. Where are you going for service? I can find out the name of the peds neurologist at Children's if you'd like - name was a favorite among those I spoke to.

Like I said I know there is an age requirement at The Regional Center but it is something to think about as your daughter gets older. Paige will not have to transition from one neurologist to another now.

Where are you in Wisconsin? We are in the southeast corner.
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Hello there. We are just south of Green Bay, north of Sheboygan. All of ang's drs are at children's except the neurologist. Aurora BayCare was unable to take us in at the time this all happened as they do not have a pediatric neurologist north of Milwaukee. Soo, we ended up with Prevea and St Vincent's. Dr Edgar, whom we saw for the first time on Monday, is a wonderful man! I'm sure at some point, due to insurance changes, we will end up having everything at children's. I've heard of Dr Sosa also and it was nothing but good stuff!!
 
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