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  1. #21
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    Sep. 7, 2009
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    Default

    My daughter has a very low seizure threshold...I expect the multiple concussions and Lyme/Babesia/Bartonella contributed to them.

    She has to be very careful not to take any medications that lower the seizure threshold.
    "We can judge the heart of a man by his treatment of animals." ~Immanuel Kant



  2. #22
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    Mar. 14, 2010
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    Hi JackieBlue! Long time no see.

    I was diagnosed with epilepsy when I was about 11 as well. I'd be happy to chat with you all about it if you'd like! I also go to UVa and love it. I've seen most of the pediatric neurologists and I've tried ALL of the meds over the years.

    My parents were terrified when we first found out, but it really isn't the end I te world for most people! I had 3 grand mal seizures and have been seizure free for over 10 years! I actually didn't ever think it was a big deal when I was a teen and didn't understand what all the fuss was about!

    Ill PM you my email address so that you can contact me with any questions. I've been through it all. (I'm on vaca in Mexico and emailing is easier than coth-ing!)
    Charlie Brown (1994 bay TB X gelding)
    White Star (2004 grey TB gelding)

    Mystical Moment, 1977-2010.



  3. #23
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    Jun. 7, 2002
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    Virginia
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    Hi AliCat. That would be fantastic! 'Waiting for that pm - Thanks!
    "Absent a correct diagnosis, medicine is poison, surgery is trauma and alternative therapy is witchcraft" A. Kent Allen
    http://www.etsy.com/shop/tailsofglory



  4. #24
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    Nov. 15, 2005
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    NY
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    I was a pharma rep and sold Migraine meds for years, so I know just enough to be dangerous!


    Anyway your comment that DD has migraines caught my eye.
    Does she have an aura with those?
    What tends to trigger them?

    When you described the events leading to your DDs seizure in the shower you mentioned she was playing Xbox then got sleepy? Was it a bright flashy-light game perhaps?

    What about the bathroom/shower- Is it bright? Glass doors and white walls with lots of reflective surfaces?
    I'm wondering if the flickery/flashy game or bright reflective light in the bathroom maybe tipped the scales over the seizure threshold for her?

    For me, bright light and flickering light [think driving on a sunny day through trees] can trigger me to get a migraine. And like Seizures, that 'trigger' for migraines gets more sensitive to being set off when allowed to trigger without aborting [does that make sense?].

    I am not saying that your DDs doc is wrong to not medicating right now- when I worked at the animal ER we also left animals who presented with a first time seizure to go unmedicated, as it is so hard to gauge with the meds on board, whether the seizure was a one time deal or was going to be frequent enough to warrant medication [please don't think I am being mean comparing your kid to pets... the treatment protocols are often very similar].

    Because of my migraines, I wear sunglasses religiously, and I also tend to drive everywhere because I am very easily made motion sick [thank God I made DH get rid of his stick shift vehicle- blech!].

    My other trigger is the barometric pressure. I can tell you when a storm is coming by how my sinus feels, and that sinus pressure triggers my migraines. As do smells [thank God the trend of wearing lots and lots of strong perfume died in the 90s! Sisters Dune perfume was KILLING ME!]

    Oh and diet! I am a carb loader who forgets to eat... when my sugar gets low I get 'the shakes' and can also trigger migraines.

    All this is to say that it might be interesting to note what triggers your DDs migraines as it might correlate or give some insight to what does or might trigger her seizures. [and maybe your doc already went through that idea with you].

    Just re-read this and noted I failed to make the connection between migraines and seizures... they are often related. My mother has always had migraines, also light sensitive like mine... and when she was on Wellbutrin it lowered her threshold just enough that flashing lights/flickering trigger 2 seizures in her. Just wanted to explain that's why I was going on and on about migraines, in case you didn't realize the connection.
    Last edited by Angela Freda; Feb. 19, 2013 at 10:58 AM.



  5. #25
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    Nov. 15, 2005
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    NY
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    I just wanted to also comment on the Beagle acting odd when your DD was pre-seizure. My previous beagle, and this one to lesser extent, is VERY sensitive to my [or anyones] moods, and not because of tone or movement... it's like they can just FEEL the tension or my mood.

    I think it's very telling and interesting [and helpful] that your Beagle acted different prior to the seizure. My suggestion would be to see if school would let Beagle attend with your DD... ok I am kidding,... sort of. I mean seriously, doesn't every classroom need a Snoopy in it?



  6. #26
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    May. 17, 2010
    Posts
    694

    Default just another normal epileptic here

    HI Jackie Blue:

    It sounds like Alicat will be a great reference, so not much for me to add. But I am posting anyway to just add reassurance. I have been epileptic since I was about 12. I have been on different meds, had 3 beautiful perfect children, a career as an attorney, etc. I have now been seizure free for over 25 years. I continue to take my medication every day. Epilepsy is often well controlled these days. I lead a normal life. I am very blessed.

    Hang in there. I know it is hard as a Mom. Getting good doctors makes a world of difference.

    PKN


    3 members found this post helpful.

  7. #27
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    Jun. 9, 2005
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    Unionville, PA
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    Best of luck to you and your daughter. UVa has a great epilepsy center, so you are in luck there. I know several of the Dr's there through my involvement in epilepsy research. They are all excellent--you are in the very best of hands!
    Delaware Park Canter Volunteer
    http://www.canterusa.org/



  8. #28
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    Jun. 7, 2002
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    Virginia
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    Quote Originally Posted by kcmel View Post
    Best of luck to you and your daughter. UVa has a great epilepsy center, so you are in luck there. I know several of the Dr's there through my involvement in epilepsy research. They are all excellent--you are in the very best of hands!
    Thanks for the reassurance, kcmel! I've definitely felt like we landed in the right place. DD's neuro is Dr. Robert Rust, Jr. Do you know him? My first impression of him was very positive and his bedside manner was SO reassuring to DD (even though DH and I thought he was a real character and were amused by his very quiet, calm, slow speech style. What better way for a neurologist to communicate? ). The hospital staff gushed about how experienced and well respected he is in the field of pediatric epileptology and the neuro attending told me she'd refer DD to someone good for follow up care b/c we'd never be able to get an appt. with Dr. Rust. Well, the very next day, when Dr. Rust came in to see DD first thing in the am (as he did everyday for her entire stay), he asked her if she'd like him to be her doctor after she leaves the hospital! And, sho' 'nuff, we're on the books for the next few routine appointments she'll need. I'll try not to get all sappy, but I must say, I was blown away by the fact that Dr. Rust, after SO many years doing what he does, really, really cares about the kids he sees and about educating and reassuring their parents, too. He and DD truly bonded during her hospital stay and nothing could make follow up care with a specialist more routine and less frightening for a child than trusting their doctor because he took the time to get to know her and become her friend. He also took the time to sit down with DH and I and drive home that DD is the exact same child that she was before the seizure and that it's our job to make sure she knows that. He cautioned us against over parenting and stressed the need for a normal home and school environment for DD. And we really needed that. I'd already ordered the oversize bubble wrap and DH was at home installing the foam on the walls!
    "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. #29
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    Jun. 7, 2002
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    Default

    Quote Originally Posted by Angela Freda View Post
    I was a pharma rep and sold Migraine meds for years, so I know just enough to be dangerous!


    Anyway your comment that DD has migraines caught my eye.
    Does she have an aura with those?
    What tends to trigger them?

    No aura that she's noticed. Seem hormonal since they occur approximately monthly, sometimes skipping one or more months now that she's further along in her development.
    Failure to drink enough and being overtired will result in headaches that can be pretty rotten, but not quite as bad as the lovely migraines she gets that always feature projectile vomiting.



    When you described the events leading to your DDs seizure in the shower you mentioned she was playing Xbox then got sleepy? Was it a bright flashy-light game perhaps?

    Video game was Friday around 5:30-6 pm, UFC Undisputed 3. Seizure was Saturday, ~3 pm.



    What about the bathroom/shower- Is it bright? Glass doors and white walls with lots of reflective surfaces?

    No, very subdued italian stone tiles in shades of tan, brown, terra cotta, etc, darker frosted glass door, aged bronze hardware. Barely a shiny or reflective surface to be found.

    I'm wondering if the flickery/flashy game or bright reflective light in the bathroom maybe tipped the scales over the seizure threshold for her?

    For me, bright light and flickering light [think driving on a sunny day through trees] can trigger me to get a migraine. And like Seizures, that 'trigger' for migraines gets more sensitive to being set off when allowed to trigger without aborting [does that make sense?].

    I am not saying that your DDs doc is wrong to not medicating right now- when I worked at the animal ER we also left animals who presented with a first time seizure to go unmedicated, as it is so hard to gauge with the meds on board, whether the seizure was a one time deal or was going to be frequent enough to warrant medication [please don't think I am being mean comparing your kid to pets... the treatment protocols are often very similar].

    Because of my migraines, I wear sunglasses religiously, and I also tend to drive everywhere because I am very easily made motion sick [thank God I made DH get rid of his stick shift vehicle- blech!].

    My other trigger is the barometric pressure. I can tell you when a storm is coming by how my sinus feels, and that sinus pressure triggers my migraines. As do smells [thank God the trend of wearing lots and lots of strong perfume died in the 90s! Sisters Dune perfume was KILLING ME!]

    Oh and diet! I am a carb loader who forgets to eat... when my sugar gets low I get 'the shakes' and can also trigger migraines.

    All this is to say that it might be interesting to note what triggers your DDs migraines as it might correlate or give some insight to what does or might trigger her seizures. [and maybe your doc already went through that idea with you].

    Just re-read this and noted I failed to make the connection between migraines and seizures... they are often related. My mother has always had migraines, also light sensitive like mine... and when she was on Wellbutrin it lowered her threshold just enough that flashing lights/flickering trigger 2 seizures in her. Just wanted to explain that's why I was going on and on about migraines, in case you didn't realize the connection.

    Well aware that there may be a connection. DD and I are both migraine sufferers. Just for clarity, the doctors were ready and willing to write a script for AED's. They gave DH and I all the info we needed to make what we thought was the best decision for DD and then supported us in that decision (Why can't more docs operate like that?). We must have tried to weasel out of the epilepsy diagnosis at least 10 times before they drilled into our heads that with an abnormal MRI, an abnormal EEG (esp. right temporal lobe) and a tonic seizure of decent length, DD classifies nicely as an epileptic. Even armed with that information, we felt that going without AED's for the time being is what's best for little DD.
    .
    "Absent a correct diagnosis, medicine is poison, surgery is trauma and alternative therapy is witchcraft" A. Kent Allen
    http://www.etsy.com/shop/tailsofglory



  10. #30
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    Mar. 14, 2010
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    Earlysville, Virginia
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    JB just wanted to make sure you got my PM. My messages were acting up for some reason...damn iPhone!

    Dr Rust is wonderful, I saw him for a few years...but he wanted to push a brain surgery on me that many other neurologists disagreed with, so just stay informed (I know you will!)
    Charlie Brown (1994 bay TB X gelding)
    White Star (2004 grey TB gelding)

    Mystical Moment, 1977-2010.



  11. #31
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    May. 11, 2004
    Posts
    2,355

    Default

    I think what was ment by bright flickering lights/lighting was do you have florescent lights in your bathroom. Or anywhere else in your house for that matter. There is a connection between them and neurological activity and not in a good way.

    An aura can be as subtle as looking off in the distance for a second to smelling something as obscure like bengay. It could anything odd.

    you have a PM.
    Friend of bar .ka



  12. #32
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    Jun. 7, 2002
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    Virginia
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    Quote Originally Posted by bumknees View Post
    I think what was ment by bright flickering lights/lighting was do you have florescent lights in your bathroom. Or anywhere else in your house for that matter. There is a connection between them and neurological activity and not in a good way.

    An aura can be as subtle as looking off in the distance for a second to smelling something as obscure like bengay. It could anything odd.

    you have a PM.
    No florescent lights anywhere in the house. Very warm colors throughout, very warm lighting, nothing glaring anywhere. I'm more familiar than I'd prefer to be with auras. As I mentioned, I am a migraine sufferer myself. Mine tend to be atypical with profound aura and numerous parasympathetic signs. Tons of fun. DD is interested in pursuing genetic testing to determine whether the band heterotopia was inherited or due to spontaneous mutation. We're in no rush. Of course she's curious right now, she's eleven. DH and I aren't planning to have more children and she's still a long way from family planning, herself. But, I admit to being curious whether I also have a mild neuronal migration abnormality just because of my very unusual migraines, knowing what I do now about DD. I had one grand mal seizure in college, which I'd chalked up to washing down some Tylenol with an adult beverage (after a few other adult beverages - not the best judgement, I realize, but I was young and under the influence). I never saw a doctor afterward because I felt like an idiot. But now it makes me wonder.
    "Absent a correct diagnosis, medicine is poison, surgery is trauma and alternative therapy is witchcraft" A. Kent Allen
    http://www.etsy.com/shop/tailsofglory



  13. #33
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    Jun. 7, 2002
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    Virginia
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    AliCat and bumknees, I don't know what's up with COTH, but I'm not getting any PM's. ??
    "Absent a correct diagnosis, medicine is poison, surgery is trauma and alternative therapy is witchcraft" A. Kent Allen
    http://www.etsy.com/shop/tailsofglory



  14. #34
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    Feb. 18, 2013
    Posts
    41

    Default

    You've got a good doctor. There is a reason why he wanted your daughter as a patient. Pediatric Neurology is full of pretty normal seizure types. A lot of absence seizures, JME or BRE. Lots of generalized 3 per second spike and wave. Focal abnormalities are not that common. I've seen one child with frontal lobe epilepsy and one with Temporal Lobe Epilepsy. I run EEGs on a lot of kids. We're a very busy lab. They just aren't that common. And much more hopeful prognosis than the baby with hypsarhythmia.

    I did not want to be the one to tell you that if she has another seizure, she will continue to have them. I'm glad they are being forthright with you. It is possible that this was all brought on by illness, but with her raging hormones, and other symptoms, I'd guess not. You just don't know. And that's it in a nutshell. Her MRI shows that she's got the potential to develop epilepsy. Pretty hard to prevent hormonal swings or avoid medications that lower seizure threshold if you don't have that information ahead of time. And every time I have a patient with migraines who has auras, I'm waiting for an abnormal EEG. Too similar to a description of a seizure event. I've had patients being treated for migraines for years come in and not have migraines, but seizures. Not all seizures are convulsive. Untreated seizures cause brain damage.

    You take it day by day. If she does develop seizures, the question of surgery will generally only come up if she has a hard time finding a medication that controls her seizures without significant side effects. I understand more facilities are going the surgery route. It should be viewed as more than a last ditch effort. Especially for kids. Toddlers can have an entire hemisphere removed and go on and lead a pretty normal life keeping up with their peers academically. She's just getting to the stage where pruning will start taking place. The teenage years are not a bad age for surgery. She will recover better than an adult. That being said, if it was my child, I'd still be terrified of that possibility.

    She's still recovering. Keep an eye on her and keep in touch with the doctor. Our docs/patients are hooked up so they can communicate on line with each other. Easier than a phone call or going into the office. If its critical they either fit them in or have them go to the E.D. They are also set up to be able to track seizure activity on line. So when the doc wants to know, its all right there for them to see.

    Don't get sucked too far into the black hole. She could end up on medications because she has another seizure, not have any side effects and never have another as long as she stays on the meds. That is the story for many patients living with epilepsy.


    1 members found this post helpful.

  15. #35
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    'Very helpful, Arisperson, thank you. I forgot to mention that DD was also "invited" into a house call pediatric practice. Our favorite pediatrician, who also happens to be an infectious disease specialist, only works at the office we take DD one day a week. I never knew why before, but she has her own private practice, also affiliated with UVA, that offers house calls for medically complex children when they're sick. How's this for ironic (and fortunate):

    1. Favorite ped. diagnosed DD's primary HSV gingivostomatitis.

    2. Favorite ped's husband is chief of pediatrics at UVA and also an infectious disease specialist. He saw DD regularly during our stay and reported her progress back to his wife. She came to the hospital just to visit DD the day after her lumber puncture.

    3. Favorite ped has a partner in her private practice. That partner happened to be DD's attending while hospitalized, who we also felt very comfortable with and liked. DD will see favorite ped for routine care and will see either favorite ped or hospital attending, whomever is on call, when she is sick.

    The continuity of care that this new set up will provide is a blessing. Although I was very satisfied with DD's hospital stay for the most part, I did have one MAJOR complaint. It took from Saturday, when she was admitted, until Wednesday (after the MRI) for docs to take me seriously about the seizure. They kept calling it a syncopal episode and I would repeatedly correct them. "She had a SEIZURE. She did NOT faint. I KNOW the difference." Grrrr. None of the doctors in the hospital were familiar with DD's baseline or my medical background. She was very sick and hadn't been eating well, so they just threw me in the panicky mom category and decided the hot shower had brought on a fainting spell. I began to worry that my head might pop off the next time some resident came into the room and began summing up DD's recent history for whatever group was in attendance. Every time I would interrupt and say, "No. She did not have a syncopal episode. She had a seizure." And I would go on to explain what I'd witnessed and the profound postictal state she experienced. I requested a neuro consult on Saturday night and fully expected to see a neuro doc on Monday at the latest. But at rounds on Monday morning, after discussing the "syncopal episode" the primary team seemed insulted that I wanted a neurologist to see DD and explained that they didn't "see the utility in involving neuro". ?? Fortunately, the infectious disease folks felt differently and DD saw a neurologist on Tuesday. At the time, it was only to confirm meningoencephalitis and rule out Herpes Simplex Encephalitis.

    Wednesday was the first day we saw Dr. Rust and as soon as I described what happened during DD's "episode" on Saturday, he said, "She had a tonic seizure." I wanted to scream "Hallelujah!", while simultaneously feeling like I was about to have my own syncopal episode. Even though I knew it had been a seizure and I'd been fighting to make the docs realize that, it was a huge blow to hear Dr. Rust say those words.
    Anyway, DD's routine health care providers now will also be responsible for her care if she needs hospitalization again (God forbid) and are becoming familiar with her baseline. We shouldn't lose days just trying prove we're not simply hysterical during future episodes. Every cloud has a silver lining, right?
    "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. #36
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    Feb. 8, 2008
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    Delaware Valley
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    My niece has epilepsy. In part because of her positive experience with her child neurologist, she went to medical school and is in her last year of her residency. Getting the medication right at first was a bit tough, and she had some issues again when she started birth control pills, which supposedly interfere with the epilepsy meds, or vice versa. Now she's married and just had a baby. She pretty much has it all, and if you didn't know she's had to deal with epilepsy, you would think she was the golden girl with the perfect life. I think I worry more than she does


    2 members found this post helpful.

  17. #37
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    A coworker's 11-y-o daughter has been diagnosed with epilepsy this year. She (the daughter) was actually relieved to find out that the funny feelings she'd been having for a long time were real and that she wasn't crazy! apparently she gets very clear auras and has a variety of seizure types, from very mild and almost unnoticeable to full absence seizures where she's just gone for a minute or two. I didn't realize that early adolescence was a common time for epilepsy to be diagnosed, but apparently it is.



  18. #38
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    Quote Originally Posted by Angela Freda View Post
    I just wanted to also comment on the Beagle acting odd when your DD was pre-seizure. My previous beagle, and this one to lesser extent, is VERY sensitive to my [or anyones] moods, and not because of tone or movement... it's like they can just FEEL the tension or my mood.

    I think it's very telling and interesting [and helpful] that your Beagle acted different prior to the seizure. My suggestion would be to see if school would let Beagle attend with your DD... ok I am kidding,... sort of. I mean seriously, doesn't every classroom need a Snoopy in it?
    Actually there are service dogs that detect seizures. Have you read/seen My Sister's Keeper by Jodi Piccoult? The character is a lawyer and his seizure dog is named Judge.

    Maybe the beagle could be trained and get to go everywhere with your daughter?



  19. #39
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    Nov. 15, 2004
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    Quote Originally Posted by Polydor View Post
    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.
    This post brought tears to my eyes. God bless you all for being so understanding for that student. A complete 180* from bullying. He was truly blessed.
    Maria Hayes-Frosty Oak Stables
    Home to All Eyez On Me, 1998 16.2 Cleveland Bay Sporthorse Stallion
    & FrostyOak Hampton 2008 Pure Cleveland Bay Colt
    www.frostyoaks.com


    1 members found this post helpful.

  20. #40
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    Will try to PM you again! It seems like it just sent me my own PM....
    Charlie Brown (1994 bay TB X gelding)
    White Star (2004 grey TB gelding)

    Mystical Moment, 1977-2010.



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