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Showing Visitor Messages 21 to 27 of 27
  1. joan
    12-06-2008 08:35 AM - permalink
    joan
    Thank you all* They are really good, kind, kids.

    Its the hormonal changes of puberty that triggers the E. They are born with I guess a defective gene. It runs in families. Some chemical or reaction to a chemical that effects that damaged gene? Activates the E. Its always been there but kinda lying dormant. Something like that. Im not totally educated on it all BUT I am sooo getting there. They say it rare to have 2 kids from the same parents with it but when it does happen the second child usually has a milder case. My sons has horrible grand mals. Usually within 3 hrs of waking, after that we consider it the safe zone. My daughter has myoclonics that are daily and can last for hours and now this grand mal. Was a shorter one compared to my son and she recovered in just a few hours. I cant say at this point IF her csae is milder.
    Thank you all for your kind words and thoughts. I wish I could just hug you all. ***
  2. brain
    12-05-2008 11:17 PM - permalink
    brain
    You have such a lovely family!
  3. RobinN
    12-05-2008 11:16 PM - permalink
    RobinN
    I agree...a beautiful family.
    There has got to be a reason this hits at puberty.
    Some where there is a glitch. We have the glitch too, but just on the female side of it.
  4. maggie2
    12-03-2008 09:44 PM - permalink
    maggie2
    Hey Joan ~ I found you. What a cute pic. So happy Nancy gave me this site addy. Hope your feeling great. Hugs to you.
  5. joan
    11-23-2008 06:58 AM - permalink
    joan
    thank you * I love them all very much. My son is much cuter with hair!!
  6. stilldancing_98
    11-20-2008 05:00 PM - permalink
    stilldancing_98
    You have a beautiful family.
  7. stilldancing_98
    11-18-2008 11:12 PM - permalink
    stilldancing_98
    Hi joan, wow. what a life change for you. My son is 10 with myoclonic seizures.

About Me

  • About joan
    Seizure Background
    I am the Mom of 2 children with epilepsy. Genetic. Shocking to find out after them both "seemingly" fine the first 15 years of both their lives.

    My son at 15 (he is now 21) had his first Grand Mal, JME. Hes on lamictal and IF he takes his meds does very well. He is also at a neuro pshycologist who found he has high intelligence with low memory. We are using therapy to help. I was told his epilepsy was triggered by puberty. His EEG is clear epilpetic. He also has mild OCD, anxiety and depression at times. He also has an odd birthmark on his chest. Rare bi frontal spikes & waves. Due to the side effects of lamictal we are considering our options with meds and are scheduled to change, in hospital, 2/4/09
    Update: Phillip now 21 still on 500 lamictal and does well. Jennifer now 18 and on 500 keppra and MAD. She does well and is seizure free. They are both dealing with bipolar now !! ACK!!!!

    My daughter is now 16 (almost 18 ) and it seems puberty is kicking in epilpesy for her as well. She has myclonic seizures (JME) and has started on lamictal as well. Her EEGs show inconclusive and the Video EEGS are not clear. MRI normal. She also has an odd birthmark on the inside of her arms. She shows no signs of OCD or SID.. but does show a few signs of natural b*tchiness : ) but we love her anyway : ) **
    As of jan 23 and due to a lamictal reaction, inculding a 4 day hospital stay, JEnnifer is being wweaned from lamictal and onto keppra. I so hope this is the right thing. The Drs say this is the only med that may stop the myoclonics. Lowered her lamictal to 50mg a day as she had a bad day.
    We have no known genetic Es in either family, we are still researching my xhusbands family, but it doesnt really matter. I am still trying to sort out all types of info and figure it all out. I will work on this. Lets consider it a work in progress.

    11/13/2008

    My kids both on lamictal and after getting used to it (several months) seem to do well on it. My son is the process of having his license evaluated, to see if he can continue to drive. He was also turned down by the Marines and he is heartbroken.

    My daughter just on her 6th week of meds. Her myoclonics seem less but I do hope they stop all together. She seems to be taking it well and looks at it as a good thing as she can help her brother.

    Phillip
    started meds 1/2006

    Jennifer
    started meds lamictal 75mg 2x a day 10/2008
    First Grand mal 12/5 lamictal 150mg 2x a day
    Jan 23 rash reaction to lamictal, St Barnabus till 26th. weaning off lamictal onto keppra 500mg 2x a day plus 50 lamictal 2x a day till Dr order

    9/1/11
    Jennifer almost 18 now, on 500 keppra xtended daily. She had been on Modfieid ATkins for Seizures since 6/09 she is doing wonderful. It is RARE she has any seizures. We are so grateful to Dr Kossoff

    Phillip 21, on 400 lamitcal still. He does ok. Was able to complete fire school to become a voplunteer fireman but kinda lost on what he wants to do.. than he can.

    Courage, discipline, fortitude and integrity can do a great deal to make a woman beautiful.
    Treatments
    Son Lamictal and Daughter Keppa & MAD
    Location
    NJ Shore
    Interests
    Live, Laugh, Love

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  • Last Activity: 04-18-2012 05:47 AM
  • Join Date: 07-10-2008
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