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  1. #1
    Join Date
    Jan. 19, 2005
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    Allentown area, PA
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    1,404

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    Ok this is semi-horse related at the end, I promise!!

    I have not mentioned too much about it I don't think, but my son has been semi-ill ever since he was born with many issues. Starting a few months ago he has had some small seizures, and just when I started to think things were getting better, they got WORSE. Tonight he had a MAJOR episode, which lasted for 20+ minutes. He was thrashing around with his eyes rolled back in his head, etc. Every time we go to the local hospital, they say there is nothing they can do b/c they do not have a pediatric neurologist on staff.

    Luckily the #1 rated Childrens Hospital in the country is only about 45mins away, but they also don't want him to go in anymore because they cannot find anything wrong with his brain whatsoever. Apparently some kids just have seizures. However they are starting to get worse, to the point where tonight he was acting like he could hear but not see us for about 30 mins AFTER the seizure was over.

    I need some jingles, prayers, etc Guys and Gals! I also have a new house being built, so it looks like this is going to be a REALLY rough time for us....and now that he is no longer considered medically stable I am afraid to even go to my friend's barn and ride! thanks for letting me vent!



  2. #2
    Join Date
    Jan. 19, 2005
    Location
    Allentown area, PA
    Posts
    1,404

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    Ok this is semi-horse related at the end, I promise!!

    I have not mentioned too much about it I don't think, but my son has been semi-ill ever since he was born with many issues. Starting a few months ago he has had some small seizures, and just when I started to think things were getting better, they got WORSE. Tonight he had a MAJOR episode, which lasted for 20+ minutes. He was thrashing around with his eyes rolled back in his head, etc. Every time we go to the local hospital, they say there is nothing they can do b/c they do not have a pediatric neurologist on staff.

    Luckily the #1 rated Childrens Hospital in the country is only about 45mins away, but they also don't want him to go in anymore because they cannot find anything wrong with his brain whatsoever. Apparently some kids just have seizures. However they are starting to get worse, to the point where tonight he was acting like he could hear but not see us for about 30 mins AFTER the seizure was over.

    I need some jingles, prayers, etc Guys and Gals! I also have a new house being built, so it looks like this is going to be a REALLY rough time for us....and now that he is no longer considered medically stable I am afraid to even go to my friend's barn and ride! thanks for letting me vent!



  3. #3
    Join Date
    Jul. 14, 2004
    Location
    Zone 4, Florida
    Posts
    287

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    Eek.. A friend of ours has a son who used to have bad seizures. Some of them were mild some of them were BAD. Luckily he grew out of them. They are indeed very scary. I witnessed one while he was in the pool. http://chronicleforums.com/groupee_c...s/icon_eek.gif He no longer has any.



  4. #4
    Join Date
    Jun. 19, 2001
    Location
    Pacific NW
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    3,858

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    I'm sorry for your son and all your family. My brother-in-law had seizures as a child and they still affect his life 20+ years later. Unfortunately, this is the time when Mom must demand that the Doctors get to the bottom of the problem. Your son deserves to have the condition under control if at all possible. Some Doctors would like the tough cases to go bother someone else, but a good one will keep working until your son has the best quality of life. My b-i-l was diagnosed with a brain tumor 7 years after the seizures began. It was removed, though the seizures didn't go away. Meds will work for him and he'll be free of them for awhile, then they come back. Sadly, the new surgical procedures aren't possible for him.

    Keep asking for answers, demanding that the problem is addressed. Sometimes life hands us something we hate, but we don't have much choice about dealing with it.

    Tons of jingles for all of you!



  5. #5
    Join Date
    Dec. 31, 2000
    Location
    El Paso, TX
    Posts
    13,260

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    Jumper21, I am sorry you are going thru this. But try to stay optimistic, as quite a few children do get seizures and grow out of them. Especially if they get a fever, they are more common.
    Do try to get to the children's hospital, if only for the piece of mind it will give you. Look up Febrile seizures on the web.
    I'm jingling for you.



  6. #6
    Join Date
    Jun. 1, 2003
    Location
    The Shake and Bake State
    Posts
    11,537

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    Jumpers, there are tons of meds out there for this, why won't the doctors give him meds, or have they tried with little to no success? I am so sorry. I know how scarey those seizures are, first hand. Demand that someone help your son, that is what they are there for. (I am not usually the demanding type, but in this case, I think you should be.) I am so sorry and I hope you find a doctor who is willing to help your son. <span class="ev_code_PURPLE">JINLGLES!!!</span>
    ~Amy~ TrakehNERD clique
    *Bugs 5/86-3/10 OTTB Mare* RIP lovely Lady, I miss you
    *Frodo '03 Anglo Trakehner Gelding*
    My Facebook



  7. #7
    Join Date
    Sep. 13, 2004
    Location
    Arizona
    Posts
    402

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    Major JINGLES!!! How scarey that must be.



  8. #8
    Join Date
    May. 17, 2005
    Location
    Michigan
    Posts
    703

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    I know you are feeling desperate. Um, who is his pediatrician? Your family doctor? Maybe if another medical person is SENDING you to the clinic you will get more/better attention than if you are just going there on your own.
    ****Hasta la vista, Frenchie****
    There's something about the outside of a horse that's good for the inside of a (wo)man.



  9. #9
    Join Date
    May. 17, 2005
    Location
    Michigan
    Posts
    703

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    And <span class="ev_code_RED">HUGE</span> jingles to both of you.
    ****Hasta la vista, Frenchie****
    There's something about the outside of a horse that's good for the inside of a (wo)man.



  10. #10
    Join Date
    Jan. 19, 2005
    Location
    Allentown area, PA
    Posts
    1,404

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    Thanks guys. My son regularly sees a top pediatrician whom I like very much and have a good relationship with, who recommends he go on medication but he is NOT a Neurologist so cannot make that decision by himself.

    The local hospital (and this may just be an angry mother talking) seems completely incompetent. Even their pediatric intensive care nurses took 15-20 minutes WITH A TOURNIQUATE (Sp?) on to put an IV in my son (who is the size of a 2 year old). This has happened NUMEROUS times may I add, and I know my son is not hard to get an IV into because the other hospital had 4-5 different people who replaced it with ONE TRY each time. Anyhow, the local hospital also does not have a neurologist on staff, which makes things harder. So after these episodes my son gets thrown in the car and driven 45minutes to Childrens Hospital Of Philadelphia (CHOP).

    Childrens Hospital has reviewed (or taken themselves) MRI's, CAT scans, 3 day long continuously monitored EEG's, blood test, etc and there are NO real problems (one small issue that SHOULD NOT cause a seizure). So there are no tumors, no epilepsy, etc. He is on numerous other medications for other conditions (reflux, asthma, and allergies) which could all make seizures worse, but we cannot take him off of them.

    So basically the doctors are great, we are seeing the best neurologist I can find, but they just can't come up with anything. Not only that, but because he doesn't have them often enough to see one and I have not been able to catch one on video tape yet (didn't think to pull out the camera-will next time!) they won't be "Sure" they are seizures and medicate my son. On top of it all, if they DO medicate him this will be the 6th medication he is on at the same time, which is a hell of a lot (IMHO) to put a 9 month old on.


    Please continue to pray for our son. Pics are on my webpage at the bottom of the page and I should have new ones up soon. Thanks all, I appreicate your thoughts and prayers and kind words, we are really struggling through this right now.



  11. #11
    Join Date
    Jun. 1, 2003
    Location
    The Shake and Bake State
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    11,537

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    It might be helpful to VISIT your pharmacist and ask him if any of the meds he is already on are interacting with each other and causing this. (Bring a list of the names of ALL the meds he is on)You may want to ask the pharmacist to do a little bit of research. Sometimes Drs are not all that great at knowing interactions of all the meds out there. In their defense, there are TOO many to keep up with and news ones released everyday. You shouldn't have much to worry about if you fill your meds at the same pharmacy, but many people don't, or they get free samples from their Drs. Still jingling!
    ~Amy~ TrakehNERD clique
    *Bugs 5/86-3/10 OTTB Mare* RIP lovely Lady, I miss you
    *Frodo '03 Anglo Trakehner Gelding*
    My Facebook



  12. #12
    Join Date
    Apr. 28, 2005
    Location
    SW Massachusetts
    Posts
    1,266

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    I am sending all my "think outside the box" jingles!!

    I am so disappointed that the first reaction of many people to issues like this is, “Bring on the meds.” Prescription medications are hard on the body; in particular, the gut and the liver, which often compounds the problem, causing more illness. Even more so for a developing child.

    I would consult a reputable naturopathic doctor (preferably one that is an MD as well) about a nutritional regimen for this child. That’s the only way he is going to get better. There is no miracle pill. Proper nutrition is so critical for children in today’s environment – even more so when a child’s body is being barraged with drugs, which increases toxin loads and nutrient requirements. With all the conditions he has, there has to be a root problem that the conventional medical system cannot figure out.

    As a start, I would get a copy of “The Maker’s Diet” by Jordan Rubin, N.D. It gives you the science behind health and healing. It will renew your faith in the human body to repair itself, if given the right fuel. Unlike a lot of unscientific alternative remedies, this guy has done research and testing and is having phenomenal results. His recs are based not on popping pills, but on lifestyle issues and foundation nutrition that will address root causes of illness. Here is the link: http://www.gardenoflifeusa.com/way_of_life.shtml

    The one thing I’m sure you’ve heard about as a potential cause of seizures in children are Pertussis and MMR vaccinations. Please be careful with these!

    Here are some other things I have read that can trigger seizures, that you may not have ruled out:

    Liver disease. Liver disease is a degenerative inflammatory disease that results in the hardening and scarring of liver cells. The liver becomes unable to function properly due to the scarred tissue, which prevents the normal passage of blood through the liver.

    Low blood sugar. Hypoglycemia, which brings on feelings of fatigue and stress, may be a factor in triggering seizures. Scientists have estimated that between 50 to 90 percent of all epileptics suffer from low blood sugar, and 70 percent have abnormal glucose tolerance levels.

    Lead, Chemicals, Additives and Poisoning. Toxic metals such as lead, copper, mercury, and aluminum have also been known to cause seizures. Exposure is common through aluminum cookware, auto exhaust, industrial pollution, household cleaners and copper water pipes. Pesticides are also toxic.

    Vaccinations. Because vaccines may contain proteins and/or organisms, they may produce an allergic encephalitis inflammation of the brain.

    Infections, cysts and cancer.

    Renal Kidney Failure. The role of the kidneys is to remove toxins and excess fluid. When the kidneys become diseased or damaged, they may lose their ability to perform these functions, causing a toxic build-up in the body. A toxic build-up can lead to a seizure disorder.

    Vitamin deficiencies. Research points to vitamin and mineral deficiencies as possible causes of epilepsy. The key nutrients that appear deficient in epileptics are vitamin B6, vitamin A, folic acid, vitamin D, zinc, taurine, magnesium, and calcium.

    Good luck!!!
    "There's something about the outside of a horse that is good for the inside of a man" ~ Sir Winston Churchill



  13. #13
    Join Date
    Oct. 4, 2003
    Location
    The nearest barn
    Posts
    1,511

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    Jumpers21, you have a PT!



  14. #14
    Join Date
    Jun. 24, 2005
    Location
    Nor Cal. Land of Four Seasons Mud Flood Drought and Fire
    Posts
    586

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    Did you mention that he is only multiple medications, at least one of which is for REFLUX? Like an acid inhibitor?

    I was having some pretty strange neurological "events" for the time frame I tried taking them. After many fruitless tests and no answers at all from the neurologist my sympathetic optician explained to me that certain drugs can cause momentary spasms in the tiny arteries and veins in the brain, and those temporary lapses of circulation can cause seizure-like activity. I researched the acid blocker I was taking, read the fine print warnings, and stopped taking it.

    The symptoms vanished.

    Listen to the wisdom expressed above. Change his diet, and he won't need the reflux meds.Diet changes can also work wonders with asthma, which I also have. You son could be sensitive to a common foodstuff such as (cow) dairy, for example. Food sensitivities are different than allergies. The person can still digest the problem foodstuff, but have side effects from it such as excess mucous production or excess acid secretions. Another common problem food is the gluten in wheat starch. You don't have to be a full blown celiac to have gluten problems. For some it is soy.

    Don't expect a physician to admit the meds are causing the problem. But the meds, in combination, HAVE to be suspect because he's just a child and small children are not meant to have lots of chemicals coursing thru their bodies that were tested on adults. Plus no other overt cause has been found...what is left? And most regular physcians don't understand that our American diet has changed quite radically in the past 75 years, and most processed foods now contain sugars and added grain starches from corn and/or wheat, and not all people have the genetic abilitity to digest equally.

    Those acid inhibitors can change the entire biological flora of the body and make a person much more vulnerable to infection because acids in the stomach do have a purpose...to kill pathogens. And infections can trigger asthma.

    And now, to make this horse related, I will tell you that if I intend to ride my horse the next day, eating dairy products is not a good idea because they snot my sinuses up big time and clog my ears.



  15. #15
    Join Date
    Dec. 11, 2002
    Location
    US
    Posts
    2,976

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    Jingles for your son. Hope you find answers soon.
    I\'m not crazy. I\'m just a little unwell.



  16. #16
    Join Date
    Feb. 8, 2003
    Posts
    548

    Default

    Adding more jingles for your son and family!!



  17. #17
    Join Date
    Aug. 26, 2001
    Location
    Oxford PA
    Posts
    10,337

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    Jingles for sure. Now, are you talking Children's in Philadelphia? Could you go a little further & go to AI Dupont in Delaware? I don't know that AI Dupont is better (or worse) but maybe you could get a 2nd opinion there? I always took my kids there when they were under 21. AI Dupont used to be just for "crippled" children but about 20 years ago they changed to being a children's hospital with an emergency room.

    I certainly hope things start going better.

    Yeah, I took Ali to AI Dupont when she fell off a horse & broke her arm - just to keep this horsey. Now, may your son thrive so he can ride & fall off one day.



  18. #18
    Join Date
    Nov. 4, 2003
    Location
    Dallas, Georgia
    Posts
    16,865

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    Big Jingles for your boy!!!

    Since knowledge is power, do some self research about The Ketogenic Diet. One good source is The Epilepsy Foundation-Ketogenic Diet. Start and go from there.

    It, of course, doesn't work for every child but when it does, the results are miraculous. It never hurts to ask.

    Good luck and keep us posted.
    <>< Sorrow Looks Back. Worry Looks Around. Faith Looks Up! -- Being negative only makes a difficult journey more difficult. You may be given a cactus, but you don't have to sit on it.



  19. #19
    Join Date
    Sep. 24, 2001
    Location
    Lexington, Kentucky
    Posts
    7,471

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    Major jingles for your son, Jumpers21. How old is he?

    Please do not let "treatment" stop with "we can't find anything wrong" - there is most obviously SOMEthing wrong. Push them to do everything possible to find out what is going on with your son's wiring. They may never know, but at least you will know they tried the best they could.

    As for all the "medical" advice you are receiving on this HORSE bulletin board, please take it with a very large grain of salt. You have no idea if any of these well-meaning people have any medical qualifications beyond some Internet research.

    If you can not get a satisfactory answer from your pedicatrician, then ask him/her to recommend a pediatric neurologist for you. Stay pro-active in your son's care and work with the doctors to try and figure out what is going on. A mother's instinct can be better than any diagnostic technique out there.

    By the way, my son (now 27) had childhood seizures. He went on meds, no seizures. He went off meds when he was in college and the seizures returned. Like your son, they have never been able to determine what the cause is. Because he has chosen not to endanger others while driving, he has taken it upon himself to go back on the meds. He's not thrilled with the idea since he tries to keep his system as "clean" as possible (does not even take in caffeine) but the prospect of killing an innocent person much less palatable.

    Oh, and he graduated college 1st in his class, law school with honors, and is now a successful attorney. So yes, seizures can be controlled and yes, people can lead very productive lives with this disorder.

    Give your little guy a huge hug for all of us. It's going to be okay.
    "My friends, love is better than anger. Hope is better than fear. Optimism is better than despair. So let us be loving, hopeful and optimistic. And we'll change the world." ~ Jack Layton



  20. #20
    Join Date
    Apr. 28, 2005
    Location
    SW Massachusetts
    Posts
    1,266

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    <BLOCKQUOTE class="ip-ubbcode-quote"><div class="ip-ubbcode-quote-title">quote:</div><div class="ip-ubbcode-quote-content">As for all the "medical" advice you are receiving on this HORSE bulletin board, please take it with a very large grain of salt. You have no idea if any of these well-meaning people have any medical qualifications beyond some Internet research. </div></BLOCKQUOTE>

    I didn’t want to get into this, but I have to respond to the implication that I may collect my medical information from internet research.

    In fact, my paternal grandmother and uncle both had epilepsy, as does my father in law. My young cousin had childhood seizures. So I know a thing or two about seizures, including the conventional medical treatment. When my father in law had a bad seizure while on a remote island, despite being on meds, the doctors could not figure out why. I was the one who found the reason (too much supplemental folic acid), which the doctors agreed with.

    In addition to that, scizhophrenia, depression, heart disease, narcolepsy and cancer all have affected my blood family members. When my mother was diagnosed with her third cancer at the age of 40, I decided I wanted to do everything I could to prevent myself from developing conditions that I am “genetically predisposed” to. For the past 20 years, I have read voraciously and judiciously about the relationship between diet, lifestyle and health. I do not believe everything I read, in fact, I find many alternative treatments dubious. I only subscribe to those treatments that make scientific sense and have been researched.

    As Chocomare said, “Knowledge is Power.” I believe in being open minded and informed. I am not one to blindly follow what I am told – I always do my homework. I personally have never felt better in my life, and BTW, through changes in diet and lifestyle, my mother has had no recurrence of cancer.

    I am also involved with a large local alternative health facility, and talk to people regularly about how diet and lifestyle changes can help to treat disease – alone, or in combination with conventional treatment. One woman I have counseled who was diagnosed with stage IV ovarian cancer has so far lived three years beyond her prognosis without any conventional medical treatment (which was not my recommendation, but her choice). She is pushing me to get my Naturopathic degree, which I am seriously considering.

    I don’t dismiss the value of Medical Doctors and certain conventional medical treatments. I see my OB/GYN once a year. Doctors are bright, well meaning people, who are experts on diagnosing and treating acute and chronic illness and disease (not preventing it) through conventional means. However, despite scientific advances in medicine, North Americans are suffering from record numbers of chronic degenerative and autoimmune diseases, for which there is no cure. Call me crazy, but that gives me reason to be as informed as possible. And I like to share that information so I can give help and hope to others who are not getting answers from the conventional medical world.

    Jumpers - we all wish the best for your son. Please keep us informed.
    "There's something about the outside of a horse that is good for the inside of a man" ~ Sir Winston Churchill



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