Is there anyone out there who can help?

[lesley1110]

Hi, My daughter had the on-set of early puberty this time last year. She is very tall for her age, 8 years old then and of a large frame.
In August she had her first seizure in her sleep, followed by another the next time she slept. She had an MRI to rule out any tumours etc and all was ok. She had a sleep deprived EEG which revealed she has rolandic epilepsy.

She had a further two seizures in November, in her sleep again, both lasting 8 minutes and was put onto caramazapine. She had a small seizure on waking up this morning but it only lasted a minute and she woke herself up and had no post-ictal symptoms, (she was just normal and knew what had happened).
My questions are-
Does anyone have experience of early puberty being linked with epilepsy?
Do you think the medication prevented the on-set of a fully blown seizure?
How can anyone going through this get any sleep! I turn into a manic nutcase around her bedtime every night!!! and cannot sleep, am up and down constantly.
I feel so sorry for my daughter,not only does she have the emotions of early puberty but also epilepsy to cope with,please help, I'm going mad!

 

[Nakamova]

Hi Lesley, welcome to CWE.

There's something called catamenial epilepsy, which is related hormones, specifically changes in estrogen. Some people with catamenial epilepsy are treated with a progesterone cream. I don't know if that's an appropriate treatment for someone your daughter's age, but you might want to ask her doctors about it.

 

[epileric]

Welcome Lesley

I can't say much about early puberty but I remember my puberty to be hell. My seizures were rampant but my emotions were very extreme. I was either extremely angry at someone or something or I was feeling hurt & rejected. I'd always thought that was more from my anti-convulsant medications than the seizures but we'll never know for sure.

I don't think it's uncommon for seizures to show themselves around puberty since hormones can trigger them.

There are a lot of parents here, see what they say. Meanwhile make yourself at home & check out all the "rooms" we have. If you're really stressed, the Padded Room is a great place to vent if you want.

 

[Meetz1064]

Well, I

was born with my E, so I can't say I understand the early puberty onset, BUT...I do have nocturnal seizures (sleep). From the sounds of it, her meds need to go up just a bit, and yes, they probably aborted the full blown seizure...

You may also consider diet as a way to help control them. There are a number of options to use on here--GARD, LGIT, MAD and the Ketogenic diets. I think the GARD is the most-talked about, and worked for me until I was diagnosed as a celiac...

Are you keeping an E journal? Perhaps there were things that she did on those days that triggered the seizures....food, sleep, hormones (Nakamova did a GREAT job of covering that! ), tv/computer/video game use........I've got a list if you'd like to see it.

Finally, here's a suggestion. It may sound strange, but it will save you a LOT of running. And, your daughter may not like it at first, but explain why to her, and then she should be OK with it. A BABY MONITOR. Yes, put a baby monitor (or something similar if she highly objects to that) in the room so that when she goes to bed at night, you can HEAR what's going on, and aren't running all over the place. Make sense?

Welcome to CWE, before I forget. 8) Epileric's right about the Padded Room, it's great for the days where you just need to let it all out. But the Library and Kitchen in particular are GREAT for finding all sorts of information.

So feel free to kick up your feet, sit back and enjoy yourself. Hopefully someone else will bring around some decent coffee....I still haven't figured out how to work that machine without burning the coffee.........URG.

Mr B, our host, has built us an AWESOME home here, and there are plenty of people to hang with, befriend, and learn from. And, if memory serves me correctly (HAHA :roflmao::roflmao, there are even a couple of parents here with BRE (Benign Rolandic Epilepsy). So, you might want to check out the Nursery......

Take care,

Meetz
:rock:

 

[lesley1110]

Thank you so much for taking the time to reply and giving me so much useful information. I dont feel so alone anymore and my daughter has been looking at your message and feels better thats its not just her! Seizures have certainly occured when she has been over tired, so have tried to get her to bed at a decent time!. not easy with the holidays etc.
I have found out that people with BRE usually have problems with reading and language,which she does. I am in the middle of looking form research papers that definately establish a link,will let you know.

Thanks again.

 

[lilynartie]

Hi my daughters started seizures at the age of 9 which eventually controlled, but hers are still very hormonal related, we had another blipp when she was 13 and again at 17, hers started off in the night but there is no pattern now,hers still start with petie-mals and that has always been her pattern, we are at the moment changing meds which is a very long winded thing, hope this has helped, i also no how it effects the whole family, lack of sleep no apetite, but you also have to put things into prespective and think positivetly

 

[RobinN]

My daughters seizures are also related to hormones.
I learned that there are also foods that are high in estrogen as well. Also that a sugar imbalance due to poor diet can increase estrogen in the body.

We have tried the progesterone cream with Rebecca and may begin it again. My problem with it, is the side effects of not being consistent worries me. I was having difficulty making sure that it was being used twice a day. So I decided to let her body manage the surge, but that does not seem to be working yet.

We also are attempting to find nutritional ways to be healthier, and slowly that is showing to improve seizure control.