Hello eveyone!

[talley_valley]

Hello everyone! Let me tell you about me. I am a mother of two beautiful little girls, Abby(3) and Katie (9). I am a nationally certified pharmacy technician, a pharmacy technician certification instructor and a nursing student. My 9 year old spent a week in the hospital this summer with her first seizure. After tests and medications and doctors she has officially been diagnosed with epilepsy due to cortical dysplasia. We found out early on in this process that she is allergic to Dilantin (oh great right!). She is currently on Vimpat and Keppra, both twice a day, and Diastat and Clonazepam for seizure activity. My Katie has been a real trooper with everything going on, only really fussing over the sleep deprived EEGs. Our problem has come with the fact that she condition seems to change every few weeks. We are CONSTANTLY changing the doses on her medication. I am, luckily, comfortable enough with her medications from my history in pharmacy that I have little to no problem calling the neurologist and discussing with him what is happening and dose adjustments that we need to make (yes, I am sure he LOVES me). I honestly have no clue how a mother deals with this without the past experience I am lucky enough to have! Until this past week I would say we were doing pretty good controlling Katie's condition. In a 2 week period we have gone from being described as having 90% seizure control to having to give her Clonazepam daily for 3 days for obvious seizure activity. Are all these changes to be expected early on in the diagnosis (we have been 6 months now)? Does anyone else have these rapid changes in their condition? We have a wonderful pediatric neurologist that always calls us back himself. He has sent us to the Cleveland Clinic to get a more definitive diagnosis. I feel we are in the best hands possible, but I still feel helpless. Long story short, that is why we are here.....I feel helpless. I can't kiss it and make it better and it is wearing me down. I look forward to hearing everyone's story and, hopefully, not feeling so alone. Thanks.

 

[valeriedl]

Nice to meet you talley valley!

I can relate to what you are going through. I was diagnosed with epilepsy when I was 26. I'm also allergic to Dilantin.

Through the years I've been on so many different meds and dosages that I've lost track. I think if you can name the med I've probably been on it at one time or another. Some of the meds may have worked for a short time (maybe a few months), didn't work at all, caused more seizures or the side effects were too bad that I had to stop taking them and try something else.

I'm currently on Depakote, Tegretol, Kepppra and Lamictal. I also have a VNS implant.

I am still having seizures but they aren't as bad and have reduced a lot. My seizures are normally partials but I might have one tonic colonic once a year.

When I was first diagnosed and while messing around with my meds I was having around 5 bad seizures a week, sometimes more than one a day. Now with the 'recipe' that I'm on I'm having roughly 5 a month.

I know it's frustrating but it's just something that you have to do. I can't begin to imagine how hard it is for your daughter considering how young she is. And for you too having to see your little girl go through this and there really isn't anything that you can do to make it just go away.

You'll get lots of good advice and people to talk to on here, I know I have and this site has helped me a ton with things.

 

[Nakamova]

Hi talley_valley, welcome to CWE!

I'm glad you have a responsive pediatric neurologist whom you trust and like -- it can make everything so much easier! Your daughter's up-and-down seizure control may be related to her changing metabolism, and/or she may be extra-sensitive to small variations in medication. Keppra and Vimpat have different half-lives -- Vimpat's is about twice as long as Keppra's -- so that could be part of the problem. As your daughter gains weight that can also increase the rate of medication clearance.

[BTW, I'm surprised that your daughter is on the Vimpat -- I didn't think it was recommended for children under 16 since there's no data on it's safety or effectiveness in children.]

I hope the specialist at the Cleveland Clinic can help stabilize things for you and your daughter. If medication doesn't get the seizures under control, don't be scared if surgery is mentioned as an option. It has been used in children, and has a good track record in stopping seizures due to cortical dysplasia.

Best,
Nakamova

 

[Belinda5000]

Hi talley valley

I was diagnosed when I was 2.I'm allergic to Depakote,Gabatril,Lamictal,Keppra,Vimpat and I'm med resistant.
I take Tegretol,Topamax,Clonazepam,Onfi,Phenobarbitol
I'm on my my 22nd AED.
I know how frustrated one can get over seizures I spent a lot of time in hospitals because of my seizures.

CWE has helped me get out some of my frustration&anger.