Mesial Temporal Sclerosis?

By Ariskakes Latest Activity July 31, 2011 at 3:09 pm Views 2,352 Replies 8 Likes 2

Ariskakes

Hi I'm new and just recently found out that my daughter who is 8 has Mesial Temporal Sclerosis. She's only had 3 grandmal seizures in the past 2 years and they are mostly when she is sick. She's currently taking medication and it seems to be working. She has some type of episodes every week or couple that include saying that she feels funny or sick. Will lay down and sleep from 11a.m. to 4p.m wake for about 15mins then go back to sleep till 9 p.m. when she wakes back up she is very confused. What she says makes no sense. She can't walk without losing her balance and falling over and will talk very slow. After about 40 mins of that she is back to sleep for the rest of the night and in the morning she is fine…like nothing happened. Does anyone have any idea what could be going on. I'm new to this and don't know what to expect or what talk with her doctor about. Please share your experience with this including if you have this condition and any memory issues or attention issues that you might have. Any limitations and helpful tips.

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Replies (8 replies)

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  • riverkings
    riverkings August 1, 2011 at 11:03 am   

    To be honest I had never heard about MTS and so I did a little research, which I am sure you have already done your share of. I was interested to find out that it is closely related to temporal lobe epilepsy, which I know we have a few here that deal with that. As a parent it is very scarey when our kids are having to deal with these type of issues, my daughter has LGS (a severe form of epilepsy) and i finally realized that the only thing that is consistent and normal with her seizures and behavior is that nothing is ever consistent and normal with her seizures and behavior. I hope you have found a good doctor that will work with you and listen. I know that was difficult to do for us. I'm sure it is scarey for your daughter too. here is a book I found that may help her know she isn't alone http://www.epilepsyconnect.com/product-review... . good luck with your new journey and please know we are here for you.

  • Ariskakes
    Ariskakes August 1, 2011 at 2:28 pm   

    Thank you soo much! I'm sorry to hear about your daughters condition. I will keep your family in my prayers.

  • AuntieM234
    AuntieM234 August 1, 2011 at 3:19 am   

    Hello: I don't know of the condition that you mention, but I'm pretty sure someone else here will be familiar with it. Just give them a chance to get back after the weekend. I'm sorry I can't help with it. ;-) Mara

  • Ariskakes
    Ariskakes August 1, 2011 at 2:29 pm   

    I get that response from everyone. I don't even think the doctor really knows what it is because I never get straight answers. Thanks for taking the time to reply even if you have no experience.

  • AuntieM234
    AuntieM234 August 1, 2011 at 4:16 pm   

    You're welcome. I wish I could be more help. I understand your frustration at not having a physician for your daughter that is forthcoming with you about her condition. Several years ago, I began having seizure-like episodes. I felt it may be something caused by my Fibromyalgia or Diabetes. I don't lose conscientiousness and I can hold it off until I get myself in a place where I prefer to give in to it. By holding it off, I get a headache which gets more severe the longer I'm holding back. NO ONE has ever seen me in the throes of an episode. The point I want to make is, my PCP at the time referred me to a Neurologist for an EEG. After the EEG, the Neurologist told me that there is some "unusual activity" in my brain, but he wasn't sure as to what it is. As I was leaving, the Dr handed a brochure to me, which I just folded with my receipt and placed in my handbag. A couple of days later, I pulled the folded information from my handbag and discovered a brochure on "EPILEPSY". i thought that surely must be a mistake, because my sister had epilepsy and what I had was nothing like she had. I never discussed it with my then PCP, who I really didn't care for. Years later, I was fortunate to be able to switch my PCP to one who seems to be much more knowledgeable, caring, and willing to give adequate time for discussion on any issue I wish. He explained, at length, that there are many types of Epilepsy and accompanying seizures. I was amazed. I still don't know if I have Epilepsy or, if I do, what type it is, because I told my PCP I didn't think I had it and really didn't want to talk about it anymore. I know that was a foolish thing to do and have been kicking around the idea of talking to my PCP at length about it and determine exactly what it is. I just don't understand why the Neurologist didn't take the time to discuss my EEG with me.

    Your position, I know, is far more critical. I can't possibly know how difficult it is to have a child with E. My heart goes out to you, and my prayers, as well. Also, if I find any information, I will let you know. ;-) Mara

  • Ariskakes
    Ariskakes August 1, 2011 at 6:13 pm   

    Your condition sounds very alarming to me. I hope that everything goes well in the days to pass. It's a shame that the neurologist didn't take the time to explain to you whats going on exactly. They just send you out like another number in the epliespy category. My 4 year old daughter took seizures from the age of 1 to 3 due to a horrible bad reaction to the MMR and Chicken pox vaccination. She would take grandmal seizures up to 7 times a week sometimes and all her MRI and EEG came back normal. Lucky for us she just stopped having them one day and has only got one here and there when she spikes a fever. But at that time they couldn't tell me anything other than she has some type of E. IDK…she hasn't been on meds in over a year because I took her off myself. They had her on Keppra and at that age it makes them have some serious fits of rage. No one was helping me so I weaned her off the med myself and haven't had an issues since thank god. But with my other daughter now this is all new. This can affect her memory and learning ability and in some ways it already has. From what I learned so far…this is uncommon in children and it's not something that is passed down from family. IDK but if you find anything please do share. Oh by the way I love your name. My other daughters name is Amara lol

  • AuntieM234
    AuntieM234 August 1, 2011 at 8:32 pm   

    Thanks for sharing, and BTW re your daughter's name … Its a small world! I sort of got my name by accident. My parents named me Myra, but they pronounced it Mara. I was born at home in rural Arkansas so when my parents said my name for the Dr's record he just wrote it down. My Dad was a coal miner, and my parents always just used the Coal Miners Union record as proof of birth in all cases requiring a birth certificate, so I never saw mine. After my parents were deceased, I sent to Arkansas for a copy of my birth certificate. When it came back, there it was, my name was spelled Mara. I liked it, so I had all my records changed.

  • Ariskakes
    Ariskakes August 7, 2011 at 3:22 pm   

    LOL I like it.