New member, Sue

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smoreno

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Hi - my name is Sue and I have a daughter with epilepsy that started when she was 2 weeks shy of her 14th birthday. she has been diagnosed with tonic clonic and staring - sometimes the seizures are different but usually triggered by lack of sleep and visual stimulation (ie: bright lights, strobe lights). Have done alot of my own online research and sometimes it sucks because there are no answers but I'm teaching her to try and manage the situation for as long as it continues. She just developed a speech issue 2 days ago where she almost sounds like she has developed a New Jersey type accent - it has come and gone over the last 2 days and she is worried about it. Looking to see if anyone has experienced the speech/accent issue and any advice. Appreciate it...
 
Hi, Sue, and welcome to CWE!

I don't experience any speech issues with seizures, nor have I heard/read of this before. Just out of curiosity, when is the last time she saw her pediatric neurologist (I'm assuming she is under 18 years old), and when is the next visit? If it is not any time in the next week or so, you may want to phone about this new symptom in the event a medication modification is required.

Was the issue of "catamenial seizures" discussed at the neurology appointments? I don't know if this would change the type of medication your daughter is on, but could be worth asking if this is what she has. Also, if your daughter does not see an epileptologist (neurologist who specializes in epilepsy) you may want to ask for a referral to one.
 
Thanks materjen! called her pediatric neurologist this am and awaiting his reply - am now checking on the epileptologist dr availability in my area - appreciate the advice...sue
 
Hey Sue, welcome to CWE!

Is your daughter fully conscious when the speech problem occurs? If so, then it could be some form of a simple partial seizure (rather than a tonic-clonic or absence seizure). The seizure might be a motor seizure that is affecting her tongue and speech, or it could be affecting a speech-related center in the brain. When she had an EEG, did it indicate what parts of the brain the seizures were affecting?
 
Like Nak said, this could be a seizure coming from the center of the brain. The "Broca's" area of the brain is where thoughts/speech are formed. Your daughter may be "conscious" but still having this seizure and not be able to control this "accent". The Broca area of the brain plays a key role in speech. So she could be experiencing a form of aphasia that is known to go along with some types of epilepsy.

When I've had seizures, others have told me I just talk gibberish, nonsense, but I don't have an accent. I have a damaged hippocampus and do experience aphasia so I have difficulty remembering words, names, months, things like that.
 
Thanks - she has had so many different types of seizures, it's hard to pinpoint but I appreciate all the info - I hadn't heard of what you're describing -
 
Hi Sue,
Welcome to CWE! When I was your daughters age and having seizures it was hard because the seizures happened do to hormones changing and puberty. Just like your daughter certain colors triggered seizures for me so I had a special e.e.g. done and they flashed different color strobe lights one at a time and found out what colors were triggering the seizures for me. You may want to ask your daughters Epileptologist to do this. I also found taking vitamin B12 once a day helped reduce my seizures. I have both absence and complex partial seizures. Another thing I have done is the ketogenic diet this worked great for me and reduced my seizures greatly.
If you haven't started keeping track of your daughters seizures get a calendar and write down what time she has a seizure and the type of seizure. Also take note and write down when she starts and stops her monthly cycle. By doing this my Epileptologist was able to see a pattern in my seizures and how I would have 1 week every month where there would be 2-3 days where I would have seizures and it was do to hormones changing.
I've also found a low pressure in the weather triggers seizures for me and I have more seizures in the fall and winter compared to the spring and summer which are called "seasonal seizures" this happens because there's less serotonin in the fall and winter compared to spring and summer.
Here's wishing you and your daughter only the best and May God Bless the Both of You!

Sue
 
I've also found a low pressure in the weather triggers seizures for me and I have more seizures in the fall and winter compared to the spring and summer which are called "seasonal seizures" this happens because there's less serotonin in the fall and winter compared to spring and summer.

This seasonal seizure I've never heard of. I have, however, heard of "seasonal affective disorder" (SAD), mainly happening in the winter months.

Serotonin is a neurotransmitter that's called the "happy molecule". I know the docs can measure serotonin levels, but I didn't know they could tell if the blood levels reflected the serotonin levels in the brain.:ponder:
 
So interesting, you have found a drastic reduction in seizures as a result of Ketogenic Diet.
I have actually had days with no activity whatsoever. This is so not what I am used to. I believe that MenoPause is also at play here. Too bad it took 56 years to figure that out although truthfully I always sensed a connection. 2 years ago I suffered a subdural hematoma as a result of falling backwards. 2 weeks later I had a "burr hole craniotomy" to relieve the damage. I still suffered seizures though and I had to wear a bicycle helmet.
I believe the Ketogenic Diet has potentially, as an anti inflammatory caused the Traumatic Brain Injury to heal. I still wear the helmet at night or if I have to take my dog out.
After all these decades I don't know if I will ever be able to decrease my arsenal of drugs, Dilantin, Frisium and Clobazam. I will continue the diet. The Charlie Foundation has just had a huge symposium in Banff, Alberta. I noticed today the speeches are finally available on line.
Brilliant!!!!!!!!!
 
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