New Here - Mom of 12 Year Old Boy

[CopingMom]

Hi Everyone
My son had his first seizure on Christmas Eve 2009. It happened early in the morning - we were still in bed and he got up to go to the bathroom and had a grand mal. We went to the hospital and had a normal EEG and CAT SCAN. The second seizure was June 12 - pretty much same time and outcome. Had another EEG in July that came back normal. On August 3 he had five seizures in a row beginning at 3 a.m. and about every hour or so after that until 9:15 when had a really BAD one. He turned blue. On August 3 we started 500 mg of Keppra twice per day and went up to 1000mg of Keppra twice per day. We had a normal MRI last Thursday. In the past week my son has been acting very irate and has had suicidal thoughts. He's very angry. We are getting him off of Keppra and starting Topomax now. He's very aggressive towards his little sister (six years old) and seems increasingly jealous of her every move.

His tests are normal but he continues to have a numb sensation in his left cheek. He told me that this was happening before and after he'd had seizures.

I'd love to hear from anyone who has any comments for me.

[skillefer]

The aggression is probably due to the keppra....it can cause something called "kepprage" for some people...so changing off the keppra and onto the topamax should help. As for the jealousy, it's probably due to the fact that she isn't having seizures. I've often envied my younger brothers for not having to deal with what I have to.

Welcome to CWE. If you have any questions, feel free to ask. Also, check out the info in the library here.

[CopingMom]

Thank you for responding to my post. I am feeling at the end of my rope these days.

He's experiencing numbness in his left cheek - our neurologist thinks that's his aura. He's had the numbness now four days in a row - and I am afraid that we're close to a seizure cluster.

[Rae1889]

Have they looked into Bells Palsy? Or maybe Todd's Paralysis?

What were the things that tied the events together? So far it was early morning after bed time. Could it be that he has developed diabetes, hypoglycemia or maybe a blood pressure problem?

What about food allergies? As that can bring numbness too.

[CopingMom]

Hi
his face doesn't droop or anything like that - and the numbness only lasts a few minutes.

I have been thinking just todaythat he might be diabetic though. Or hypoglycemic. I guess I will make him a doctor appointment and find out what they say.

Thank you!

[Nakamova]

Hi CopingMom, welcome!

There can be all sorts of triggers that contribute to the seizures; Low blood sugar can be one of them, as can fatigue, or other physiological and environmental stressors. If you keep a health/seizure diary for your son you may be able to isolate any triggers, and/or note when his meds may be causing side effects.

There's a lot of great information here at CWE about meds, strategies, alternatives -- I hope you can check out the archives, and feel free to post questions anytime.

Best,
Nakamova

[Dutch mom]

Welcome from a mom to another mom, my eldest son has epilepsy, he turned eleven last July.

[Connie Tech]

your son should have an ambulatory EEG (wear it overnight at home) since his seizures are early morning. if the EEGs ordered were for him to be sleep deprived, it would have increased the chances of "capturing" an event. Meds work very differently on young children, and children 'act out" differently than adults. They pick up on parental emotional responses also--are you responding the same to his seizures as let's say if you found out he had diabetes??. I'm hoping you are seeing a Pediatric neurologist for treatment and testing..don't be afraid to let them know what's up and your concerns. sometimes it takes a while--

[douglas]

Hi Everyone
My son had his first seizure on Christmas Eve 2009. It happened early in the morning - we were still in bed and he got up to go to the bathroom and had a grand mal. We went to the hospital and had a normal EEG and CAT SCAN. The second seizure was June 12 - pretty much same time and outcome. Had another EEG in July that came back normal. On August 3 he had five seizures in a row beginning at 3 a.m. and about every hour or so after that until 9:15 when had a really BAD one. He turned blue. On August 3 we started 500 mg of Keppra twice per day and went up to 1000mg of Keppra twice per day. We had a normal MRI last Thursday. In the past week my son has been acting very irate and has had suicidal thoughts. He's very angry. We are getting him off of Keppra and starting Topomax now. He's very aggressive towards his little sister (six years old) and seems increasingly jealous of her every move.

His tests are normal but he continues to have a numb sensation in his left cheek. He told me that this was happening before and after he'd had seizures.

I'd love to hear from anyone who has any comments for me.

hi, sorry to hear of your situation. i take keppra. based on my own personal experience as well as other things i have read, it takes a while to get used to keppra. months and months. i think it took me about 6 to get used to it. short fuse, tempers and sometimes aggression are common. suicidal thoughts and deep depression are rare and not common at all. perhaps keppra is not the right drug for him. or also, perhaps its the dosage. i am no doctor or pharam expert, but your son's dosage seems high. his dosage is the same as mine and i am 40 years old and 200lbs.

also, having a seizure condition (aka epilepsy) and also having normal CT's, MRI's and EEG's is very very common.

i am sorry, i cant give you any advice. just try to find a doc. whom you feel comformable with. if you don't feel good about the doc you have, switch to another one. the doc./neurologist you have makes all the difference in how you and your family deal and cope with the situation.

[douglas]

Thank you for responding to my post. I am feeling at the end of my rope these days.

He's experiencing numbness in his left cheek - our neurologist thinks that's his aura. He's had the numbness now four days in a row - and I am afraid that we're close to a seizure cluster.

i am in the camp which believes that there is no such thing as 'aura' and you can't count on them as a form of warning sign or assurance that you have at least X amount of time before a grand mal or a cluster happens.

they are all seizures, some to a lesser degree than others. other will disagree and they have every right to. its all subjective.

[douglas]

Hi CopingMom, welcome!

There can be all sorts of triggers that contribute to the seizures; Low blood sugar can be one of them, as can fatigue, or other physiological and environmental stressors. If you keep a health/seizure diary for your son you may be able to isolate any triggers, and/or note when his meds may be causing side effects.

There's a lot of great information here at CWE about meds, strategies, alternatives -- I hope you can check out the archives, and feel free to post questions anytime.

Best,
Nakamova

agreed. all that and more. having this condition means you have to take extra care of your brain. make sleep, rest, diet, a priority.

[Connie Tech]

Auras occur to certain people and not to others. An aura does not necessarily mean you will have a seizure and if you have a history of auras, you can also have a seizure without one. All that said, keep a record of his "auras", when they occur (morning, afternoon, before eating, etc) esp around waking or bed time. Document how tired he is, if he's ill, etc.

As for medications, children are very different than adults..dosage is not the issue but at what level it works, and are frequently adjusted up and down. yes, medication adjustments can take a while..again, when is the med given, when does the behaior start and does somehting specific trigger the behavior.

Ther is alot of turmoil with your son right now--this involves, him, the parent, the school and the family and friends. Children pick up on the differences and very quickly, can learn to play those differences. He is very frustrated too--treat him as much as you are able to the way you did prior to his seizures. Log activities (lots of work but SO helpful to the docs). The auras MIGHT let you know what's going to possibly occur but they might also be a "fear" reaction now.

Be alert and Good Luck!!

[douglas]

i dont think auras exist. its a myth and something left over from some old quirky/quacky times. its a type of seizure -- the human brain malfunctioning in a different part of the brain affecting different areas.

[Cint]

i dont think auras exist. its a myth and something left over from some old quirky/quacky times. its a type of seizure -- the human brain malfunctioning in a different part of the brain affecting different areas.

They do for me. Some "experts" do call the auras simple partial seizures, but nonetheless, they still give me time to know that something bad is going to happen soon and I do need to get to a safe place before the BIG one hits.

[douglas]

They do for me. Some "experts" do call the auras simple partial seizures, but nonetheless, they still give me time to know that something bad is going to happen soon and I do need to get to a safe place before the BIG one hits.

I understand what you mean. early on, when i was getting accustomed to my condition, i remember my mother, who is a nurse, being convinced that all epileptics have auras and some kind of internal warning indicator system which warns of oncoming grand mals. what we tried to do back them was to try to figure out what this "aura" was and to know to recognize it when it happened.

since then (back before i commited to medication) I did have occasions where i did have a simple partial which was followed by a grand mal a few hours later. But I have also had occasions where i just went right into a fully blown grand mal without any simple partials before hand.

i can respect that everyone's condition is unique and particular, but i try to make sure people who are just starting to understand this condition don't buy into everything they hear or read. simple partial precursers to grand mals are not guaranteed to always happen so its not a good idea to count on them as a safety net.

[RobinN]

Welcome CopingMom -
I am also a mom of a child who began having seizures at the age of 14. She is now 18, and is doing really great. She is not medicated and has gone 5 months without a seizure.
Hers has been triggered by blood sugar imbalance. She was tested positive for hypoglycemia this year, and managing her diet has made a huge improvement.

I hope you find ways to cope on your rollercoaster ride. It is rough at times.
CWE has been a wonderful place to work through issues.

[Daisy0400]

Hypoglycemia? Isn't it impossible with the keogenic diet?

[RobinN]

Daisy - could you please reword your question. I am not sure what you are asking.
My daughter is not on the ketogenic diet.

[douglas]

Hypoglycemia? Isn't it impossible with the keogenic diet?

i remember i once read about hypoglycemia being a possible trigger. i ran it by my doc. they did all the blood tests. nothing came of it. all normal. but its worth a shot. just ask the doc to do *ALL* the blood tests. i had to specifically ask for it becuase they dont do it automatically.

[Daisy0400]

Thanks, any other ideas.