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    Old 05-02-2004, 09:05 PM   #1
    Join Date: May 2004
    Posts: 4
    niki_9274 HB User
    new here...mesial temporal sclerosis

    hi I'm new 3 yr old son was diagnosed with mesial temporal sclerosis...he has complex partial with secondary generalization...this was the diagnosis from his neurologist...then we went for a long term eeg and another dr saw him and said that it is unheard of for a 3 yr old to have MTS and ordered another MRI...results came back the same, but we did not see that dr again...we were released from the hospital before the results came we have an appt on tuesday with his neurologist...I have a million questions for her, but I always feel like I forget to ask her everything I'm looking I went online to look up mesial temporal sclerosis, but I can't seem to find anything that is really helping me...does anyone know anything about it, that could maybe help me out?

    Another thing that happened (and I will talk to his dr on tuesday) is that during his long term eeg he had a seizure in his frontal it common to have seizures start in different areas of the brain?

    I guess I'm more interested in mesial temporal sclerosis, because he does have some learning delays/disabilities and before his first seizure dr's were thinking it was maybe autism or it common to have those type of symptoms if you have MTS? any help would be so appriciated...I'm just a scared mom and I'm glad I found a place like this...I've read a lot of posts before posting this and it seems like you have a great support team here...thanks in advance for any help!

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    Old 05-03-2004, 07:34 AM   #2
    Join Date: Oct 2002
    Location: USA
    Posts: 292
    Phoebe HB User
    Re: new here...mesial temporal sclerosis

    Very plainly put, Mesial means Middle, Temporal refers to the Temporal lobe, and Sclerosis refers to tissue such as scar tissue. That is usually the diagnosis for those of us who have Complex Partial Epilepsy. That little area of scar tissue is usually a focus where seizures originate. The area of Sclerotic (scar) tissue, the focus, that the doc detected is in the Middle section of the Temporal lobe. That is the MTS. The front section, toward the face is Anterior, the Middle is Mesial, and the back section is called Posterior. These only refer to location. It is very much possible to have more than one area producing seizures, more than one focus. That is why it is important to have proper and thorough testing. These different areas can produce different seizure types as well. You can find more on MTS by using the Search feature here. By the way, that was my diagnosis too like others on this and other boards. I had very high, prolonged fever as an infant, and the high temp caused damage to a small area in the Mesial section of my Temporal lobe. That area was my focus for my seizures. Hope this helps. Phoebe

    Old 05-03-2004, 01:36 PM   #3
    Join Date: Apr 2003
    Location: St Petersburg, FL US
    Posts: 445
    LisaG890 HB User
    Re: new here...mesial temporal sclerosis

    Hi Niki,

    Wanted to welcome you to the board! You will find lots of people with all kinds of seizure related issues, several parents with E kids as well. Pull up a chair and make yourself at home!

    I love your idea on the little gifts! Wish I had thought about that one!

    We have 2 E kids; Jenny (15) TLE, Complex partials w/ left focal. She's taking 400 mlg Tegratol per day. And Jake (2) TLE, Complex partials w/ left focal and secondary generalization/grand mals, Jake also has hypotonia (low muscle tone) and is considered Globally Delayed at this point and Autism has been discussed off and on with him... He takes 75 mlg AM, 50 mlg PM Lamictal and 750 mlg daily Trileptol. He is also on the Keto diet - started that April 12 and had to stop due to illness and we restarted it yesterday... so we're keeping our fingers crossed this works for him. I would love to get rid of at least one of the meds. Not to mention hear him say Momma again...

    Both children's MRIs are clean - showing no atrophy or scaring. Neither have had high prolonged fever, but both did have difficult births with lower then 5 apgar (sp) scores at 1 minute.

    How old was your little guy when he started seizing and what type of delays are you dealing with. Jake's neuro wants to give the diet a try and lower meds before he will test for Autism because the meds can cause some of the same behaviors in very young children!

    Glad you found us! Hate that another child/mommy is dealing with this however...

    Love and light to all our children,

    Lisa and kids

    Old 05-03-2004, 02:21 PM   #4
    Join Date: May 2004
    Posts: 4
    niki_9274 HB User
    Re: new here...mesial temporal sclerosis

    Thanks phoebe...I guess I'm still confused about MTS...I read that a lot of it comes from seizures produced by seizures...but Mason (my son) never had that...also the last dr I talked to said it is unheard of to have MTS at the age of 3...I must have misunderstood her if fevers while being an infant is a big cause of MTS...I go tomorrow to see his neuro...I guess I'll have lots of questions for her!!

    Hi Lisa, thanks for the welcome...Mason just had his first seizure in this is all really new to me...he was a preemie, about 5 1/2 weeks started with delays, some of the drs we saw wanted to rush a label of autism on him, others wanted to wait and see if he would catch up and maybe everything was due to being this seizure thing has come up...I guess I'm now hoping that his delays are coming from this MTS and that he will be able to catch up to where he should be someday...he has an actual neuropsychological eval coming up in June...he has had so many evaluations from therapists in our area, but I don't think they are too familiar with MTS, so they don't want to give him any diagnosis, they just give us therapy schedules and what we hope for him to accomplish in the next 6 months...he has had a rough little life so far and I'm just hoping at some point we get some good news!! But he has been doing a little better...his biggest delay is his speech...he just turned 3 on March 24...and was evaluated of having speech of a 16 month old...he doesn't say much...but over the last couple of months I have noticed him saying more and more and he is starting to repeat a lot of what we say.

    Does E run in your family? Is it hereditary? It must be hard to have 2 children going through old was your daughter when she was diagnosed? I see she is on tegretol..that's what Mason is on...he takes 400mg a day too...but his is 100mg morning 100mg afternoon and 200mg at night because he is showing more signs of seizuring at night than during the he had a long term eeg done and had a seizure at night while being monitored too...we will have to go back and repeat the eeg again, but not for a couple of months...

    well thanks for the welcome...I'm sure I will be online a lot now that I found this place!! I will update after we see his dr tomorrow!

    Old 05-06-2004, 12:15 PM   #5
    Join Date: Apr 2003
    Location: St Petersburg, FL US
    Posts: 445
    LisaG890 HB User
    Re: new here...mesial temporal sclerosis

    Hi Niki,

    Sounds like your family has been through a great deal since the arrival of Mason... I have a couple of friends who have had babies at the 27 and 29 week phase of justation - so I know a little of what you had to deal with then!

    Let's see -

    Does E run in our family: IF you had asked me that 2 years ago I would have told you no why! Today I would have to tell you that I believe that it does. After so much personal research and tons of talks with the drs we believe that there is a genetic issue tied in here someplace. The problem with that thought is that we can't tell for sure, because not enough research has been done in the area of genetics related to E.

    It is hard to deal with 2 - but, they are wonderful children - full of spirit and fight! Jenny's hasn't been nearly as hard to control as Jake's.

    Jenny was diagnosed for sure this past Sept. However, she had a spell a year ago that lead me to believe this would be our outcome. She decided that she wanted to spend the summer with her dad rather then go thru testing so we put it off until she returned.

    BUT, here's the kicker... For years we treated her for ADD. She started Concerta 12/00. In March 01 at a follow up visit to the ped. she discribed an Absent sz to the Dr. She sent her for an MRI and EEG that both returned clean so we dropped the issue.

    Jake started seizing in Oct 02. The first question from every Dr we met was "Is there a family history?" to which we could only reply "Maybe"... When Jenny was sent for testing in March 01 - I had contacted the Epilepsy Foundation and received tons of info on E and read very page thinking the worst for my little girl... not knowing that I was even expecting another child who would in fact have the disorder I was researching...

    Funny how God gets you ready for big things like that!

    That knowledge helped us so much when Jake started seizing. After the shock of the first 30 seconds or so and he started to come out of that first seizure he began to smack his lips and click his tounge... I know right then before walking out the door to the ER what we were heading into! Scared to death - but not paniced!

    At 28 mths. Jake is still non-verbal. He's receptive language skills are scored at 9mths and his expresive at 10mths. He has learned to say Momma and Dadda 3 different times now, only to have more seizures and wipe that knowledge away... It's a hard fight! But, I'm not giving up on him - writing him off just yet... I think there is hope that he will over come this and lead a normal life someday! I have spoken to parents who's children started out the same and ended up able to attend college and lead very normal lives...

    I need to scoot for now! More work to get done!

    Talk to you soon!

    Love and light,

    Lisa and kids

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