Epilepsy, do you have it?

[december]

He's retired now-this thread is pretty old! I'm nursing my little one at the moment-she'll be 1 in 2 wks! I had zero problems with this pregnancy (other than vomiting and dehydration that is!).

 

[jkjkj98]

She's a 3.5yr old Princess.

It's still scary at times but mostly we are just kind of "used to it" for the most part. She has Tonic Clonic, Atonic, Simple Partial, Complex Partial, and Status seizures. Really the Status ones are the scariest when she stops breathing I just panic.

I still have hope that someday we will know more about the why's of her seizures and that we will find the right drug. However naive it may be.

My 7 year old DD has epilepsy. She was diagnosed about 2 1/2 years ago. She also has Simple partial and has had 1-2 complex paritial seizures. We just spent 2 days in March doing a 48 hr vEEG and discovered she is having absent seizures as well and lots of increased seizure activity in her sleep. She was "seizure free" at least from what we could tell, for about 18 months until January. We have increased her Lamictal 3 times since then. So we are starting to glimses of her old self again. She is very quiet and introverted anyway, so when she is having more seizure activity going on, it is greatly increased. So we are very looking forward to our time to celebrate being a family and spoiling her a bit in Disney!

 

[jkjkj98]

I'm talking permanent short term memory loss- DS is really struggling in school. He is in a new school geared towards kids with "learning differences" and we are hoping it helps. He had an educational eval a year ago, and scored very low on the tests for memory- like 2% if I recall correctly.

It is interesting that you said that. My DD7 always had a fantastic memory. She has been struggling is school a bit this year too. I feel like she is really struggling with things she has to memorize. We have increased her Lamictal 3 times since January. After the second increase her level was still only a 4.1 so we went up another 25mg BID. I am hoping that will help. We go for another level in the next week. She wasn't sleeping well either and I think that was contributing maybe. Her vEEG last month showed increased seizures/epileptical activity especially between 5-7am, so she was waking up exausted and really spacy all morning. Have you noticed your DS being tired in the morning at all too? It has definitely been better with this last increase.

 

[starann]

Kennyswife

I have had 2 DS while on Topamax....both are fine (my lil guy has a patent foramen ovale, which is a small hole in the heart, but that may or may not be related to the Topamax).


Thankfully my seziures did not act up during my pregnancy. In fact we will be tryingfor our own souvie when we go back to the World in Sept. My drs are not thrilled, but not all sour either. I have additional issues other than my epilepsy to dea lwith while pregnant.



Good luck TTC!

Star

 

[Sinderelli]

It is interesting that you said that. My DD7 always had a fantastic memory. She has been struggling is school a bit this year too. I feel like she is really struggling with things she has to memorize. We have increased her Lamictal 3 times since January. After the second increase her level was still only a 4.1 so we went up another 25mg BID. I am hoping that will help. We go for another level in the next week. She wasn't sleeping well either and I think that was contributing maybe. Her vEEG last month showed increased seizures/epileptical activity especially between 5-7am, so she was waking up exausted and really spacy all morning. Have you noticed your DS being tired in the morning at all too? It has definitely been better with this last increase.

Definitely tired in the mornings, but he doesn't sleep well at all- never has. I joke that he's 11 years old and still hasn't slept a whole night He's been great on the phenobabrbitol & Lamictal, but he had a seizure 2 weeks ago out of nowhere. He hasn't had one since last June. His neuro thinks fatigue is triggering it, and I agree- it's weird, most of his seizures seem to occur on Friday nights.

 

[Kennywife]

My dx has encouraged me to get massages every month. It helps with seizures. I have them mostly at night while I'm sleeping. I wake to the Alice in Wonderland effect as I call it.

I take Topamax and Lamictal twice daily. It helps a lot. My triggers are stress and AF.

Gabbie (The Travel Writer also known as Anna)

 

[jkjkj98]

Definitely tired in the mornings, but he doesn't sleep well at all- never has. I joke that he's 11 years old and still hasn't slept a whole night He's been great on the phenobabrbitol & Lamictal, but he had a seizure 2 weeks ago out of nowhere. He hasn't had one since last June. His neuro thinks fatigue is triggering it, and I agree- it's weird, most of his seizures seem to occur on Friday nights.

I think my DD definately has more of the staring spells when she hasn't gotten enough sleep. Now with the days getting longer, it is even harder to get her to a normal sleep cycle. I am sure it will be better once school is out.