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Tonic Clonic seizures for 5 weeks straight

Tue, 04/15/2014 - 23:02
On February 2014, my daughter (15 yrs) had her first Tonic Clonic Seizure. At the ER, the doctor said everyone is allowed one seizure in their life. Two weeks later she had another TC on the couch while falling asleep. We called an ambulance and was rushed to the ER. The doctors did nothing...Exactly a week later she had a TC in school. She was then hospitalized for three days hooked up to an EEG. That same day, she had a TC seizure. The next day the Neuro came in and said she has right frontal lobe partial seizures. They gave her 500mg Keppra 2x a day. Exactly a week later she has another TC seizure. They upped her Keppra dose to 500mg in the morning and 750mg at night. Exactly a week later she has two TC seizures 6 hrs apart. They upped her Keppra to 750mg both morning and night. Exactly a week later, she has 2 more TC seizure. They up her Keppra again to 750mg mornings, 1125mg at night. EXACTLY a week later she has 2 more TC seizures...you guessed right...up her dosage to 1125mg morning and night. I am writing to you all because EXACTLY a week later, today, she had a really bad TC that lasted over 4 minutes. Obviously the medication is not working and I will be calling her Epileptologist tomorrow. We are lost on what to do. My daughter has lost faith in the medication and feels that there is no cure. Can anyone please tell us what other options we have. Is this normal? A seizure Exactly one week later for five weeks straight? I cannot function whenever she has a seizure. I am seeing a counselor because I see her having seizures everytime I close my eyes. I am a US Soldier and I have seen much more horrible things in combat but nothing affects me more than my child going through this. My family does not leave the house anymore for fear of this crippling disease. We give her B complex vitamins, regular vitamins, Magnesium 250mg every other day, Omega 3 and we eat very healthy...What more do we need to do? Every time we ask the Epileptologist about stuff we read on the internet that may help, he just shrugs his shoulders and says that there is no scientific proof. Your advice is most greatly appreciated! Thank You!

Comments

I am sorry for what you and

Submitted by mereloaded on Wed, 2014-04-16 - 08:51
I am sorry for what you and your family are going through. It is so tough. I am a mother of a 16 year old with epilepsy, I was in your shoes one year ago when he was diagnosed a few days before turning 15. This is the right place for information and support. This site has helped me tremendously to understand and knowing others in our situation too which has been invaluable. A few things first. Epilepsy has no cure. It is a manageable chronic condition that is likely for life. It may take some time for neurologist to find the correct treatment for her, as a matter of fact, medication adjustments and switching, pairing etc. is common -very common- amongst patients. It is trial and error until finding dosage/med combo that works. Keppra is a wonderful medicine, no wonder they want to start with that first, it has fewer drug and food interactions, it gets excreted through the kidney instead of liver, it has immediate effect. Some medications work better on some people while it does nothing on others. I understand your frustration. After 5 weeks of poor seizure control, yes, continuing to reassess treatment should be done, which they are doing. Please understand that raising doses should be done slowly (same the other way, slowly weaning off) because of serious reactions such as extreme and dangerous personality changes, or when stopping, status epilepticus. Seeing the dosage increase, they are doing so cautiously, so even though there is some room to continue to up the dosage, poly therapy should be considered. 80 percent of people react positively to the first medication tried, when that doesn't happen, switching medication helps 40 percent of patients. After that, poly therapy. Only 10 percent of patients have intractable epilepsy (difficult to control). Will add more later. You are not alone. Best wishes.

Where do you get those

Submitted by Anonymous on Wed, 2014-04-16 - 09:02
Where do you get those numbers mereloaded? They seem better than the Kwan & Brodie ballpark numbers that seem well regarded.

I found them on this site, on

Submitted by mereloaded on Wed, 2014-04-16 - 10:21
I found them on this site, on epilepsy 101

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