Hello. I am new to this site and epilepsy. My 5 yr old daughter was just diagnosed 3 weeks ago with left mesial temporal sclerosis. Today she had a horrible reaction to her 1st med Depakote so that knocks one med down out of the few. Does anyone here have this or have a child who does? Thanks so much!
new here- a scared momma
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sway976,
warm welcome to CWE
the other CWE members will hopefully step in and give their input. My Son is on this same medication, he is 27 and has idiopathic epilepsy, mainly nocturnal seizures but not strictly, simple/complex partial also and med does not fully control his seizures (did for a while)..
this article talks about mesial temporal sclerosis and the possibility of the using the ketogenic diet if medication does not work and there are lots of success stories in using this diet to control seizures, maybe one to discuss with the specialists and start researching…
http://www.theseeprogram.com/EParent_Intro_Article_p3_4c.pdf
here is the link to the full SEE library where the above link comes from, which I found so informative
http://www.theseeprogram.com/html/s_e_e__library.html
Keep us posted and please take good look around, becasue for sure other parents will have faced the same issue......
stay strong and hopefull and positive...
warm welcome to CWE
the other CWE members will hopefully step in and give their input. My Son is on this same medication, he is 27 and has idiopathic epilepsy, mainly nocturnal seizures but not strictly, simple/complex partial also and med does not fully control his seizures (did for a while)..
this article talks about mesial temporal sclerosis and the possibility of the using the ketogenic diet if medication does not work and there are lots of success stories in using this diet to control seizures, maybe one to discuss with the specialists and start researching…
http://www.theseeprogram.com/EParent_Intro_Article_p3_4c.pdf
here is the link to the full SEE library where the above link comes from, which I found so informative
http://www.theseeprogram.com/html/s_e_e__library.html
Keep us posted and please take good look around, becasue for sure other parents will have faced the same issue......
stay strong and hopefull and positive...
Welcome to CWE,
I don't have the same type of seizures as your child. I have Temple Lobe E. of the right side.
I have been on about all meds. but I couldn't tolerate them.
With the meds. it is trial and error as bad as that is.
Are you keeping a seizure diary? This will help you and her Dr. in noting any triggers.
I don't have the same type of seizures as your child. I have Temple Lobe E. of the right side.
I have been on about all meds. but I couldn't tolerate them.
With the meds. it is trial and error as bad as that is.
Are you keeping a seizure diary? This will help you and her Dr. in noting any triggers.
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Hi sway976 , and welcome to CWE!
Hope your daughter finds a treatment that works. The meds can help, but there are other approaches (such as the keto diet and surgery) that can be successful as well. All best you both.
--Nakamova
Hope your daughter finds a treatment that works. The meds can help, but there are other approaches (such as the keto diet and surgery) that can be successful as well. All best you both.
--Nakamova
thank you for the ideas-all of you!! I have seen mentions of both the diet and journal on here but the doc did not mention it. Will try to start that immediately - of course she only eats cheese and fishsticks at this age so the diet might be quite the struggle!!
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I have found the most helpful inform. on this forum that NO Dr. ever told me.
I have left temporal sclerosis in my hippocampus, I've had it since I was 4 and the only medication that worked for me was the tegretol XR. I was on it from the age of 10-14 and slowly taken off it since I hadn't had a seizure in those 4 years. However, my seizures came back and they can't figure out why. I have both partial complex, and grammal seizures, which for now are controlled by medication, however because of the location of the scarring, meds cant 100% control them. What type of seizures does your daughter have? what triggers them? I wish you and your daughter the best of luck and don't be afraid to reach out to any of us, we've all been through it and done it here 
I am brand new to this site. My daughter was diagnosed with MTS after a prolonged complex febrile seizure when she was 15 months old. When she turned 6 she had routine EEG and the found that she was having absent seizures. She has been on zarontin for over 2 years now and has been seizure free. There is not much info on MTS and her neurologist just says we have to go with the moment. She is going to be 9 next month and she is very immature. I have so many questions and it seems there aren't any answers. Do you think she is clear from seizures? I read one article that says seizures will go away and them come back around the age of 19 with MTS...is this true? I'm thinking we are free and clear and then decode to educate myself on MTS every so often and find new info that says I am in for it as the years go on. I just want my daughter to live a normal healthy life. Do you have any info that can help me at all?
CurlyGirl43
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Welcome sway979! My daughter had Dravet Syndrome and she is on Depakote and ONFI and that combination works well but we still get breakthrough seizures. Maybe ONFI might be a drug to look into.
Hi, and welcome to the forums
You may want to consider having your daughter tested for celiac disease. Attached is an article that shows temporal lobe sclerosis can be associated with celiac in some patients: http://www.ncbi.nlm.nih.gov/pubmed/19244266 Try searching "celiac disease and seizures", "celiac disease and temporal sclerosis", etc. This is not to say that if your daughter is determined to have celiac that a gluten free diet will stop the seizures, but it can help. One thing I would advise is to actually get her tested for it, and not just to adopt the diet, as one needs to be eating gluten for test results to be valid. Feel free to PM me to ask more about this if you are interested.