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Help! My 2yo diagnosed with epilepsy after one febrile seizure...
Thu, 07/13/2017 - 23:51Topic: Parents & Caregivers
Hello,
My son developed a fever Tuesday around noon and had a seizure around 6, it has been hell for us since. I called 911 and hospital wanted to keep him overnight as his seizure was considered a "complex febrile seizure" and they wanted to do further testing. They did an MRI and EEG scan. MRI came back normal and EEG did not (I believe it was do to sleep deprivation).
Neurologist diagnosed him right away with Epilepsy. They prescribed a medication called "Keppra" to prevent further seizures. I fought hard to not give him the meds until we did further testing or obtained a second opinion but doctors said if he had another one it can do some serious damage but that it was "our decision". As a parent of course I am going to do everything to protect him but I am deathly afraid of these meds as I truly feel in my heart he is totally fine simply had a seizure due to his high fever. We ended up giving him the meds last night for the first time but its killing me, my heart tells me he is completely fine. We looked into other pediatric neurologists today and found one who is a lot more experienced and has excellent reviews. We have an appointment with him next week. This is all so terrifying. Any advice? Similar experience? Im hoping he says he does not need meds and we can ween him off ASAP.
Comments
To be clear, his 4 febriles
Submitted by ladataylor@yahoo.com on Fri, 2017-07-28 - 12:57
To be clear, his 4 febriles were tonic clonics.
The generally accepted
Submitted by zacksdad on Wed, 2017-07-26 - 13:57
The generally accepted diagnosis for epilepsy is two unexplained (no other reasonable explanation) seizures. That being said, if the neurologist said he saw something in the EEG, he might be right. My sons' first seizure occurred as he was winding down from a series of regular vaccinations. ...and I am not saying that vaccinations cause epilepsy. The doctors at our local children's hospital diagnosed it as a febrile seizure (temp. 101+ F). It lasted about 45 minutes. They also said that if he didn't have another, then it wasn't epilepsy. Unfortunately, he had another one a few months later, and then another, and another and so on.We were lucky. We have a major children's hospital with a level IV epilepsy program in our city. If you don't, look for one within a reasonable distance from where you live. 2 - 3 hours isn't too far to go for peace of mind. As Amy Jo implied below, a pediatric epileptologist is your best choice for a second opinion. And as Just Jo said take the MRI and EEG results with you, or try to get them sent to the other doctor(s) electronically.All anti-eliptic drugs (AED's)have side effects. Keppra can cause moodiness, unexplained outbursts of anger and drowsiness. Vitamin B-6 can help mitigate the moodiness and anger. My boy takes 100 mg of the B-6 a day. I think it depends on the dosage. My boy was a holy terror when he was taking 2000 mg per day. When we were able to reduce that to 750 mg per day our sweet kid came back. To be clear, he's on a three drug regimen to keep the seizures at bay today.I was scared to death of the meds too, but not as scared as I was helplessly watching my son lie on the ground twitching, endlessly drooling and going cyanotic.