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  1. #1
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    Question DD diagnosed with epilepsy a week and a half ago. Experiences, advice, questions?

    DD just turned 11 in early January. She's been a very healthy and robust little girl since having her tonsils and adenoids removed at 3 1/2. She has dyslexia and a stutter (better some days, worse others), but she works HARD and school is beginning to get easier for her.
    We went to Florida in mid-Jan. DD started feeling bad within days of returning home (Monday night). Went to pediatrician with temp of 103, not affected by Tylenol or ibuprofen, diagnosed with lymphadenitis (Tuesday). Came home with Augmentin, but she didn't improve at all. In fact, she worsened. Went back to pediatrician (Thursday), diagnosed with primary herpes simplex gingivostomatitis from first exposure to herpes simplex type 1 (the one that causes oral cold sores). Doc commented that it's rare to see a primary exposure in someone DD's age. Most of us run into HSV-1 much, much younger for the first time. Came home with oral Acyclovir and a very sick little girl.
    Friday evening, while playing an X-Box game with DH, DD suddenly got very sleepy, set down her remote and fell asleep on the couch. Didn't seem weird, as sick as she'd been, but it was only 6 pm and she went ahead and slept (woke once for a few minutes) through until 6 am Sat. On Saturday, her fever was much improved, but she was eerily quiet. Very pale, just not herself. While waiting for a call back from the doc's office, she went to take a shower. I was in the laundry room, DH in the kitchen. Bathroom situated between the two. I was putting clothes in the dryer quickly so I could go check on her when we heard the most gawdawful banging and thumping coming from the bathroom. I was sure she's fainted and fallen through the glass shower door and onto the very, very hard stone tile floor. I knew I'd find her unconscious and bloody (at best) on the bathroom floor. Only I didn't. She was standing, in the back corner of the shower, s.t.i.f.f. as the proverbial board, eyes squeezed shut, arms glued to her sides, head snapping back rhythmically. I can't even describe what went through my head. I didn't know if she'd hit her head so hard on the stone walls of the shower that she was experiencing a seizure related to a major brain bleed.......or if the seizure was the primary event......but I was utterly horrified. She remained stiff for about another minute, during which time it was IMPOSSIBLE for DH and I to lay her down on the BR floor. The degree of stiffness is unimaginable. Then she relaxed some and her eyes opened, but there was no one there. She remained unresponsive, grey, with black dinner plates for pupils for another 2 minutes or so, then began to come back to us, shortly after DH had laid her on her bed (her bedroom is right off the bathroom). She couldn't see for a little while, then experienced blurry vision, which gradually cleared. A rather long-seeming postictal state followed, during which time every hair on my head turned stark white. Okay, not really. But I definitely gained some new worry lines and crows feet!
    Naturally, this earned her an immediate visit from the rescue squad and an ambulance ride to the hospital. She ended up hospitalized for 8 days, on IV antibiotics and acyclovir. She was diagnosed with viral meningoencephalitis (Thanks, HSV-1) and, along the way, while trying to rule out the MUCH more serious Herpes Simplex Encephalitis (HSE), it was determined that she has Double Cortex Syndrome (aka, Band Heterotopia), albeit very mild, which gave way to right temporal lobe epilepsy. The Double Cortex Syndrome (DCS) came about while she was in utero. 'Always been there, always will be. The abnormal firing in her right temporal lobe, likely the same - DCS is known to cause epilepsy.
    Current theory (held by Chief of Neurology at UVA) is that DD has always had a lower seizure threshold than so called "normal". The extreme illness, fevers, and irritation of her central nervous syndrome brought her down below that threshold and we saw the result that awful Saturday in the shower. The question remains whether she was bound to begin seizing/displaying "typical" epilepsy, or whether she is only in danger of seizing when severely compromised. And this is why I'm putting all of my resources - time, financial, mental - into developing the World's First Crystal Ball. But really, she was released from the hospital after 8 days in-patient (and after losing 14 pounds! She's a STICK!) with a script for Diastat (rescue med for seizures lasting more than 2 minutes), but without daily anti-seizure meds. Watching and waiting isn't easy, but the joy and relief of having her home and FINALLY acting and feeling like herself again overpower the fear and worry, most of the time.
    Mostly, I think I'm still in some state of disbelief. Or, rather, I alternate between acceptance and disbelief. I mean, HOW could that happen? It seems like one minute we were on vacation, having a blast. Came home to a fun weekend and then BAM, sick kid. And then REALLY sick kid, then a SEIZURE, of all things, then hospitalization which dragged on and on (with a very sick kid), all the frightening and invasive tests and procedures, MENINGITIS and ENCEPHALITIS and then......EPILEPSY!?!?!?! I'm stunned.
    The school has been supplied with a Diastat syringe, teachers and school nurse know all the details they need to know, DD sees neuro again in April.
    I figured I'd make good use of off topic day to throw this out into the COTH community and see what I can learn. And maybe DD's experience can help someone else? Has anyone had any personal experiences with epilepsy, an epileptic child? Any info/advice/suggestions and questions are most welcome!
    "Absent a correct diagnosis, medicine is poison, surgery is trauma and alternative therapy is witchcraft" A. Kent Allen
    http://www.etsy.com/shop/tailsofglory



  2. #2
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    Hugs to you for what must have been a nightmare.

    My niece is epileptic, but luckily has been in control for 2-3 yrs now. She is 16 and been seizure free long enough she is allowed to drive. It was a very hard road while she was younger with mild-grand mal seizures. The worst were when she had grandmal at school as she would void her bladder during it and other kids are very cruel for both the seizure and then "wetting" herself The problem was regulating the medicine with a growing child. Now that she is done growing, the meds are able to do their job and they don't have to further adjust the levels.

    I hope she is better and can continue without the meds.
    Epona Farm
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  3. #3
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    Sounds awful.

    Are they sure she has epilepsy or could the seizure have been a symptom of the meningitis/encephalitis? I had that two summers ago and I remember that seizures are a symptom of early meningitis, especially in children. here's hoping she's been over-diagnosed and the seizures will not continue. Jingles for you all!

    FWIW, meningitis was unbelievably, extremely painful. She might not be fully ready to fully engage in school again for months. The head pain lingered for about 3 months for me -- extreme, extreme head pain that was only controlled by Dilaudid.



  4. #4
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    Default Epilepsy

    I've worked at an Epilepsy Center for 18 years and my Brother's wife and best friend both have epilepsy.

    Don't panic. That's the first thing. Frequently, epilepsy can be controlled by medications. Sometimes you have to try several as the side effects can be difficult.

    It sounds like you have a good neurologist. This is important. Follow his advice. If the seizures are not fully controlled, then get a second opinion at certified Epilepsy Center. Don't wait years to do this, however, as uncontrolled seizures can cause cognitive problems. He's right about the seizure threshhold. Some people have a lower threshold than others.

    The ultimate solution for uncontrolled seizures, esp those in the temporal lobe, is surgery. Yep, they remove the part of the brain that originates the seizures. I didn't believe it either when I first started working at the center, but they do it and it does work. There is A LOT of testing that takes place first.

    Good luck and hang in there. My brother and his wife successfully had a son. His wife is now off most of her meds.
    ~~~~~*~*~*~*~*~
    “ride your own horse” from sayings for life.



  5. #5
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    They say that epilepsy does not run in families, yet in every generation on my father's side has had some form or another; be it grand mals or little petite mals or just sporadic eye twitching.

    I am very experienced having epilepsy myself and my sister.

    I do not want to go into detail about my families experience on a public board. I will PM you and we can talk. Anyone else that wants to PM me is free to as well.



  6. #6
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    My 8 years old daughter has epilepsy and cerebral palsy due to a brain bleed at birth (15 weeks premature). Her seizures are very well controlled with Trileptal and Keppra daily. We haven't seen a seizure in 2 years!

    We had to use a Diastat on her a couple of times before we found the right balance of meds. It never worked. She'd turn into a rag doll, but the seizure would continue (could tell from the sounds she made and her eye movement).
    "Is it ignorance or apathy? Hey, I don't know and I don't care." ~Jimmy Buffett


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  7. #7
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    Quote Originally Posted by fordtraktor View Post
    Sounds awful.

    Are they sure she has epilepsy or could the seizure have been a symptom of the meningitis/encephalitis? I had that two summers ago and I remember that seizures are a symptom of early meningitis, especially in children. here's hoping she's been over-diagnosed and the seizures will not continue. Jingles for you all!

    FWIW, meningitis was unbelievably, extremely painful. She might not be fully ready to fully engage in school again for months. The head pain lingered for about 3 months for me -- extreme, extreme head pain that was only controlled by Dilaudid.

    fordtraktor, MRI showed a developmental brain abnormality. It doesn't affect her much. Without the virus and ensuing seizure we may never have known. A band of cells in her brain did not migrate to where the should have while she was a puny little embryo. This condition, Band Heterotopia, or Double Cortex Syndrome, causes epilepsy. She had an EEG before the MRI that showed generalized slowing (from the meningitis - this did clear before she was released) and unusual activity in the right, posterior temporal lobe, consistent with right temporal lobe epilepsy. 24-hour EEG showed resolving of the generalized slowing, with continuation of the abnormal right posterior temporal lobe activity. Based on those findings, the tonic seizure and observation while hospitalized, the entire neuro team that cared for her at UVA signed off on the epilepsy diagnosis.
    "Absent a correct diagnosis, medicine is poison, surgery is trauma and alternative therapy is witchcraft" A. Kent Allen
    http://www.etsy.com/shop/tailsofglory



  8. #8
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    Quote Originally Posted by MunchingonHay View Post
    They say that epilepsy does not run in families, yet in every generation on my father's side has had some form or another; be it grand mals or little petite mals or just sporadic eye twitching.

    I am very experienced having epilepsy myself and my sister.

    I do not want to go into detail about my families experience on a public board. I will PM you and we can talk. Anyone else that wants to PM me is free to as well.
    Interesting....Band Heterotopia is heritable on the long portion of the X chromosome and if you've got that, you've got epilepsy. So, at least some forms of epilepsy are heritable, for sure.
    "Absent a correct diagnosis, medicine is poison, surgery is trauma and alternative therapy is witchcraft" A. Kent Allen
    http://www.etsy.com/shop/tailsofglory



  9. #9
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    Quote Originally Posted by IndysMom View Post
    I've worked at an Epilepsy Center for 18 years and my Brother's wife and best friend both have epilepsy.

    Don't panic. That's the first thing. Frequently, epilepsy can be controlled by medications. Sometimes you have to try several as the side effects can be difficult.

    It sounds like you have a good neurologist. This is important. Follow his advice. If the seizures are not fully controlled, then get a second opinion at certified Epilepsy Center. Don't wait years to do this, however, as uncontrolled seizures can cause cognitive problems. He's right about the seizure threshhold. Some people have a lower threshold than others.

    The ultimate solution for uncontrolled seizures, esp those in the temporal lobe, is surgery. Yep, they remove the part of the brain that originates the seizures. I didn't believe it either when I first started working at the center, but they do it and it does work. There is A LOT of testing that takes place first.

    Good luck and hang in there. My brother and his wife successfully had a son. His wife is now off most of her meds.

    I feel like, while the diagnosis is a bit of a drag, we struck gold with the neurologist. He is a pediatric epileptologist, very well known, highly respected and quite the character! He has a singular talent for making the monumentally frightening seem like a walk in the park. 'Gotta' love that in any pediatric health professional! He operates the Epilepsy and Pediatric Neurology Clinic at UVA, which is where DD's regular care will be provided from here on out.
    I'm aware of the surgical "fix" and, while it remains an option in my mind, I hope we never, ever have to approach making that decision. M mind clings to the possibility that we'll never see another seizure. Even as it acknowledges that, given the structural and electrical status quo in her little brain, that would be unlikely. Like any parent, I want life to be as easy as possible for her. And epilepsy is one of those Big Complicators. But, throughout these last few weeks there's one thing I've learned: My Baby is not to be underestimated. If there's a challenge, she rises to it. When there's fightin to do, she FIGHTS. When things get difficult and uncomfortable, she sucks it up and presses on anyway. My maternal need to protect and worry makes me fear for her, but she does. not. fear. for. herself. She has taken her diagnosis in stride and has accepted it fully. It's now a part of her and makes her no more and no less than she was before she knew. It just is. Honestly, it seems almost a relief to her. She seems weightless since she's started feeling better. Given how she's struggled with dyslexia and stuttering, I think she's been searching for WHY for a long time now. Now she has answers. She's not stupid. She's not slow. She has epilepsy. And so do a lot of other people. I think she's a pretty cool kid. But then, I am biased.
    "Absent a correct diagnosis, medicine is poison, surgery is trauma and alternative therapy is witchcraft" A. Kent Allen
    http://www.etsy.com/shop/tailsofglory


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  10. #10
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    She sounds like a very cool kid, JackieBlue. What a wonderful, positive outlook! you should be a very proud mom.



  11. #11
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    Quote Originally Posted by Curb Appeal View Post
    My 8 years old daughter has epilepsy and cerebral palsy due to a brain bleed at birth (15 weeks premature). Her seizures are very well controlled with Trileptal and Keppra daily. We haven't seen a seizure in 2 years!

    We had to use a Diastat on her a couple of times before we found the right balance of meds. It never worked. She'd turn into a rag doll, but the seizure would continue (could tell from the sounds she made and her eye movement).

    Oh, CA, your Diastat experiences sound awful. I don't know which is worse. Witnessing the seizing itself, or our inability to do ANYTHING at all to intervene or help. It's got to be heartbreaking when you use the one tool you have and even it makes little difference.
    Congrats on the 2 years seizure free! It must be a relief for everyone. Do you find that the side effects of the meds bother you or your daughter, or do they subside with time?
    "Absent a correct diagnosis, medicine is poison, surgery is trauma and alternative therapy is witchcraft" A. Kent Allen
    http://www.etsy.com/shop/tailsofglory



  12. #12
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    Quote Originally Posted by JackieBlue View Post
    Given how she's struggled with dyslexia and stuttering, I think she's been searching for WHY for a long time now.
    The neuropsychologist I work for just did a talk on cortical periventricular heterotopia, which is somewhat related to band heterotopia. She did the talk on the relationship with epilepsy, learning (reading) disabilities and cognitive strategies. She reviewed some literature and research in this area. If you are interested, pm me and I can see if I can get the powerpoint for you.

    All the best to your daughter.



  13. #13
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    Many healthy wishes for your daughter and your family.

    I had epilepsy as a child. I think I was 7 when I was diagnosed. Thankfully, after a couple grand mal seizures, mine were controlled by meds. First by phenobarbital, but I was allergic to it. Then by Dilatin. I had annual EEGs - kind of fun because I had to stay awake all night the night before, so I could fall asleep during the EEG. Because the seizures were controlled, I was able to do everything a non-epileptic child did. When I got close to driving age, my doc took me off the meds. They wanted to see if I had outgrown the seizures. I haven't had one since, thankfully.

    Your daughter sounds like a really cool kid. I hope this is just a blip on the radar for her.



  14. #14
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    My best friend and college roommate is epileptic. Had her first seizure at age 17 out of nowhere and didn't have another for a few more months. No one else in her family has any history of epilepsy.

    The thing with daily seizure medications is once you go on them it is really hard to get off of them. My roommate has had more seizures from missing a dose then she has from just her epilepsy - but when she takes it she doesn't have any. She takes Keppra every 12 hours. Plus her meds give her side affects too.



  15. #15
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    DH and I were left with the decision: to medicate or not to medicate. The docs did a very good job of explaining the benefits and drawbacks of the available meds and DD's neuro didn't feel it was a mistake to stay away from the meds for the time being. She was so altered during the better part of her hospital stay that the thought of meds pretty much guaranteed to come with side effects, many of which affect personality, was just heartbreaking. We just ached to get our little girl back. Then, factoring in the challenge of coming off the meds if it turns out she doesn't need them, it just seemed best to observe in the short term and reevaluate if necessary. Naturally, if she has another seizure, she'll have to be on meds. The whole idea of "waiting for a seizure" is agonizing. My imagination goes wild and I envision all kinds of hideous scenarios - seizures occurring in bad places, traumatic, life changing injuries from seizure related falls.... I wish there were some sort of advance warning system. Oddly enough, the day that DD had her seizure, shortly before she got up to go to the shower I was on the phone with my mom. I remember telling my mom I thought her temp must be going up again because the cat had just hopped down off of her perch atop DD, gave her a crazy look and took off. When DD's temp was in the neighborhood of 103, none of the animals wanted to snuggle with her. At the same time, though, her dog, Lizzie, wouldn't leave her alone. DD was trying to get Lizzie off of her (totally NOT normal behavior for DD) and Lizzie, usually the most submissive, obedient little Beagle mutt, simply would NOT budge. I even mentioned that to my mom and commented on how odd it all was. Maybe Lizzie is a natural born seizure dog! And the cat behaved strangely, too, so maybe she felt something, too? Seriously though, I do believe that Lizzie knew something wasn't right and I adore her all the more for sticking with her little girl even when she wasn't wanted. *sniff*
    To those with experience with this, do seizures ever become "predictable" for either the victim or those in their company? DD reports feeling VERY sleepy right before hers. We're coaching her to sit down and tell the nearest adult that she feels funny and has epilepsy if she feels sleepy like that again, but I don't know if she was able to do anything by the time she felt so tired. She was definitely not herself all that day and was horribly pale, but she had viral meningoencephalitis, so that could have been responsible for all of the external signs. So much uncertainty. Darn it.
    "Absent a correct diagnosis, medicine is poison, surgery is trauma and alternative therapy is witchcraft" A. Kent Allen
    http://www.etsy.com/shop/tailsofglory



  16. #16
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    When I was growing up and starting in grade 7, one of my classmates had epilepsy. The entire class was told about it and what to do if he did have a seizure. Unfortunately, we had lots of practice with regular grand mal seizures. It got to the point where we ( the students) had a whole routine down pat ( move desks, hoody under head, someone run to tell principal/nurse) and it was generally the teachers freaking out. And we got to the point where we could read him and be prepared for when it happened.

    I know he had surgery for to insert something to help regulate things but don't think it really worked.

    And we never teased or made fun of him, whether we realized it was to serious to or teachers wouldn't have let it happen.

    Best of luck and jingles for DD.

    P.


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  17. #17
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    Quote Originally Posted by JackieBlue View Post
    Interesting....Band Heterotopia is heritable on the long portion of the X chromosome and if you've got that, you've got epilepsy. So, at least some forms of epilepsy are heritable, for sure.

    interesting, way back in the 1970's when my family members starting having seizures they did not have the genetic link yet. My sister was the first documented child to have a grand mal ....she was 5 months at the time.



  18. #18
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    I've lurked for a long while, but actually got motivated to register just because of your post.

    I work in clinical neurophysiology at a busy pediatric facility. We do a lot of epilepsy monitoring of children and adults, but no surgery at our facility. I do a variety of electroneurodiagnostic testing especially EEGs.

    It sounds like you found a really great neurologist and a good facility. Hang in there. Just because she had one seizure event doesn't mean she's doomed to a life of them. She had a lot going on to lower that seizure threshold. It will be interesting to see what pops up on a follow up EEG in 6 mos. If the temporal lobe abnormality is still there, then a decision will have to be made about what to do about it. The good news is that as a child's brain grows and develops it often will 'grow out of' a seizure pattern. The bad news is that hormones can bring on seizures. So its wait and see for you. Most epilepsy docs will give you one seizure. Just like a get out of jail card! Many, many things can bring on a seizure. She's got the MRI results to show that she has the POTENTIAL to have epilepsy. With the Herpes and meningitis, things have been aggravated. The question is will it stay that way. Probably yes. Only time will tell. There is also the fact that she might have been having small seizures that were undetected by anyone around her prior to this event. Not all seizures are easy to pick up. I'm sure this was discussed with you. I'm sure they didn't give her a diagnosis of epilepsy lightly.

    When you go back in April, I'm sure you'll have a lot of questions for your doctor. Temporal Lobe Epilepsy can be a bit of problem if that is what she does develop. Most of the AEDs are prescribed in childhood, so the brain doesn't wire to seize. What ever it does repetitively is what it does. The theory is if they can keep the brain from doing abnormal stuff while development is occuring it will eventually go away. Most childhood epilepsies are assumed to have a genetic/structural cause, even if its not apparent. Her cause is apparent.

    I do procedures on a lot of kids that are on meds. Some have poorly tolerated side effects, some have very few side effects. Its very individual. Most kids who aren't on meds, but have had seizures recently have pretty abnormal EEGs and I know the docs are not terribly happy to see them not on drugs.

    There is a diet. I'm sure you'll read about it. If you do, its best to remember that its not a harmless diet. Its a medical treatment. It is so hard to follow, that most docs don't even mention it unless there is a feeding tube.

    And yes surgery is often where individuals with Temporal Lobe Epilepsy end up. That doesn't mean your DD will. Or if she does, they will just be better at their methods by the time that is discussed.

    Its all very difficult for families. What to do, what to do??? Don't make your self nuts on the internet. Pay attention. Especially to suspected fevers and over exertion. Make sure she stays hydrated. But let her be a kid. As you think of questions write them down. You don't want to forget anything when you see the neuro. Pediatric Neurologists are pretty much a hoot. Nothing is not worth mentioning. If she has another event before your appointment, let the neuro know. In a nut shell, just live. Give her hugs. Get hugs yourself.


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  19. #19
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    Arisperson, WELCOME to the COTH posting community! It's so much more fun to be a member than a lurker. Thank you so much for registering and posting. Your insight and experience are very helpful and comforting. We did discuss the possibility of mild seizure activity prior to The Main Event and it's quite possible. DD has always had very "active" sleep habits - teeth grinding, talking/mumbling, flailing, stiffening. Who knows? Her 24 EEG at the hospital didn't show any seizure activity, but it was just one night.
    Docs tell us that if she has more seizures, that's pretty much what she'll live with. They assure us that she will not grow out of them. The poor girl is a hormonal mess already, at 11 years old, so the fact that she hasn't had another seizure yet seems fortuitous. She's rather...developed...battles hormonal acne and gets monthly migraines. She has not gotten her period yet, but it can't be too far away. On the other hand, though, it's possible that the seizure and the illness weren't directly related. Docs say this time in her life is perfect for the beginning of epilepsy. If it were bound to manifest, it probably would now, even without the virus.
    I'm already keeping a journal of occurrences and a list of questions. DD has had episodes of dizziness, blurred vision and head aches since we've been back home, so I'm keeping track of when these happen and what she was doing at the time. She's going to worry me to death, but I'm trying my darnedest NOT to over parent. I know she needs to feel normal and to be a kid.
    I've read about the ketone diet. At this point, I don't believe the benefits would out weigh the risks.
    So bummed that OT day ends tonight.
    "Absent a correct diagnosis, medicine is poison, surgery is trauma and alternative therapy is witchcraft" A. Kent Allen
    http://www.etsy.com/shop/tailsofglory



  20. #20
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    No experience with epilepsy but have been on a few different epilepsy type meds for migraine prevention. None are fun but not the end of the world. Many jingles for little JackieBlue and the whole family!


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