9 year old boy with epilepsy but no diagnosis

[Shalinee]

Hello !

Iam the mother of a 9 year old happy, intelligent & active boy ! this year on the 2nd of june our son Aadi had his 1st episode - we wr told later its a seizure and then several followed in the month. He was diagnosed as an epileptic however none of his MRI's show anything in his brain, his EEG's do show activity. Our family has no history of epilepsy and there is no reeason for him to get these seizures- not physiological at least.

Its been almost 4 months his seizures are still coming, his epileptologist has already prescribed 2000mg/day Lavera and Epilex chrono....there is little respite.....

None of the doctors have been able to tell us the reason for his seizures...since we are believers we are hanging onto Faith and we know Jesus will heal him.....but in His time.

Anyone here who knows anything about such seizures- they are calling these partial seizures....

 

[Nakamova]

Hi Shalinee, welcome!

The majority of epilepsy cases don't have any apparent cause, so while it's frustrating not to have that piece of the puzzle, it's not unusual. For many, EEGs come up negative as well -- this can happen when the seizures are fleeting, or originate too deep in the brain to register. In these cases the diagnosis is made on the basis of the actual symptoms, as well as whether they respond to treatment.

Are the medications making any difference at all? If so, then epilepsy is the likely diagnosis. Unfortunately it can often take trying many medications before the right one is found. There are also non-medication-based approaches that have had success with reducing or controlling seizures, in particular diets such as the ketogenic or Modified Atkins. You might want to ask your doctor about those options if the meds continue to be problematic in terms of efficacy or side effects.

Many CWE members have Simple or Complex Seizures, and we have many parents of children with epilepsy on the members as well. Please feel free to ask questions and explore the forums. I hope your son and your family find some relief and answers soon.

Best,
Nakamova

 

[Shalinee]

Thanks Nakamova- we had a doctors appt. this morning and he says "our son's case is 1 in 100" where epilepsy has been diagnosed though there are no causes and the medication does not seem to be working. He says usually undiagnosed epilepsies are not too difficult and the seizures stop within 1-2 months.....we're still waiting. Infact this afternoon as well he had a mild one- just a noise from his mouth and impaired speech thereafter.... iam still exploring the site....will try and connect with some people in the other rooms.....

Appreciate your response and encouragement.....