Discussions By Condition: Medical Stories

Please help my daughter

Posted In: Medical Stories 15 Replies
  • Posted By: Anonymous
  • August 7, 2007
  • 00:33 AM

My daughter was a very healthy very smart 8 year old until she started having seizures, that was in November 2004. It is still unclear but she was in a kiddies ride at a shopping centre when she fell and bumped her head, not hard, she got up and got on again, half hour later she started to have seizures, Was the fall the first seizure or the trigger? That day she had 9 seizures. Doctors said it could be migraines or epilepsy? The next week we were back in hosp with another cluster of seizures, so they started to treat the epilepsy, but we just couldn't get the right drugs and she started to change. She got more and more ataxic by the day and her speech was slower than normal, but she was still very happy. We swapped, added and changed drugs to try to stop the seizures but nothing was working, more clusters of seizures, 18 in one day, 25 in one day. And always getting more and more wobbly. We went for nearly 4 months without a seizure and then bang 30. So the neurologists decided that they would try a course of steroids to try to kick start her brain apparently it had worked on another little girl before. So we stopped all other drugs, and did started to do some more involved tests. That's when they did a lumbar puncture that gave her a massive migraine that lasted for about 8 weeks. At its highest the staroids gave her better response time where it had been almost a 10 second delay to back to normal but as it started to come down the seizures returned with a vengance I lost count of how many. That's when the docs decided to tell me to my shock and horror that they didn't think it was epilepsy anymore but something much worse. At first they said Battens Disease so we tested for it group 1,2 &3 and also did some more test to rule out other possible diseases, we even sent test overseas. After around two to three months we got back the tests all negative, back to square one. By then she had CT scans-normal, MRI -normal, EEG's that always came back abnormal but that was because of the seizures, and she kept getting worse. by the end of 2005 she couldn't walk unassisted anymore she would just fall, she walked like a drunk. At the beginning of 2006 I noticed that she started to choke on her foods and drinks.
We tested it and yes she was having difficulty swallowing so we started to give her mashed everything and thickened fluids, but that too was getting worse so we had to do a PEG on her belly so that we could bfeed her straight to her stomach.No more foods through the mouth. by then she was wheel chair bound and starting to loose her speech and muscle tone. The docs are at a loss, we've done tests some of them twice just in case things had changed over a year. So now Amy doesn't walk, talk, eat, swim, read or write, can't use her hands, they are closed, muscle tone is horrible we can't bend her, the seizures seemed to have gone completely, she dry reached (gags) all day and night and vomits a lot, doesn't go to the toilet anymore and is very emotionally unstable, is happy one minute crying or angry the next. We just finished doing another MRI and it came back normal AGAIN, despite the fact that there is nothing normal about her, except that she understands everything we are saying, if anyone says anything funny she is the first one to laugh or if something is sad she is the first one to cry. We've done every test possible and everything comes back negative, the docs have just told me that we will never know and that her time is very limited considering that what ever is attacking her is very aggressive and is moving too quickly. If there is anyone who knows someone who might be going through something similar or have any ideas please let me know I am at a big loss.

Reply Flag this Discussion

15 Replies:

  • Save your daughter's life....FIND NAET OR BIOSET THERAPY LOCALLY. www.naet.com This treatments works no matter what someone's "diagnosis" is. So many people with so many tests with so many non-answers... Take your daughter...you won't regret it...It will save her life!! God Bless you and your family...mommy cat :)
    mommy cat 1654 Replies Flag this Response
  • hi, thanks for replying, what is NAET or Bioset therapy exactly, we're in Australia would we have it here?
    Anonymous 42789 Replies
    • August 11, 2007
    • 01:34 PM
    • 0
    Flag this Response
  • NAET/Bioset is a combination of accupressure and science. Google it. There is alot of information and countless testimonials. I just wrote a post about my evening out last night. Someone told a story of a friend who was "dosed" with acid at a party...sad....the girl was in very bad shape. Her parents were told by doctors to put her in an institution...she would never recover from the residual effects of the acid...she had been given way too much.Her mother refused to give up. After many moths of traditional treatment(medications...enough to tranquilize an elephant)...the mother went seeking alternative treatment.She found NAET and her daughter is fully recovered...normal and healthy.After that story, I told mine...I've had 6 treatments and my symptoms are almost completely resolved.There is NAET and Bioset in Australia...actually a person from this forum who has what I have...CFS/ME lives in Australia...and she just went for her first Bioset session yesterday. That's how I know it even exists "down under"There is info overywhere...just google NAET/Bioset and your local area...you will find it.Best of luck and let us know how it goes!!...mommy cat:)
    mommy cat 1654 Replies
    • August 11, 2007
    • 11:00 PM
    • 0
    Flag this Response
  • I was attempting to look for NAET/Bioset for your daughter in Australia and I came across this link...I hope you find it helpful. Please know I write to you with love and compassion in my heart and a story that astounds anyone who knows me for surely they have all witnessed the miracle of this therapy and my almost instant recovery of 90% of symptoms.Please follow this link, and read...for it is true, every bit. http://www.acudebra.com/howitsaved.htm Best regards...mommy cat
    mommy cat 1654 Replies
    • August 12, 2007
    • 00:42 AM
    • 0
    Flag this Response
  • My friend from Aussie e mailed me this info in a flash for you and your daughter. God Bless You...mommy cat and friend!! :) MELBOURNE:Kew: 3 Denmark Street. Telephone 03 9855 2249Williamstown: 141 Railway Place, phone 9855 2249 Moonee Ponds: 192 Pascoe Vale Road, phone 9855 2249 NSW:Advanced Allergy EliminationGround Flr Suite 1 / 77 Pacific HIGHWAYNorth Sydney New South Wales 20601300 853 023 CONTACT NAME: Geraldine GallagherLife Energies Centre provides SOLUTION ORIENTED KINESIOLOGY, NAET and VIBRATIONAL ESSENCES. Geraldine Gallagher is the founder of the Life Ener... Mosman, New South Wales Phone:02 9960 1898 QUEENSLAND:Advanced Allergy EliminationLevel 12 / 167 Eagle STREETBrisbane Queensland 400007 3221 4644 Renew ClinicsSharon Wilford221 Waterworks ROADAshgrove Queensland 406007 3366 8955 SOUTH AUSTRALIA:Jim Norman Clinic:All Allergies, Chronic Fatigue and Chronic illnesses15 Netley ROADMount Barker South Australia 525108 8398 30980419 310 332 WESTERN AUSTRALIA:Advanced Allergy EliminationLevel 3, 1111 Hay STREETWest Perth Western Australia 600508 9481 3611
    mommy cat 1654 Replies
    • August 12, 2007
    • 00:51 AM
    • 0
    Flag this Response
  • we weren't sure where in Australia you lived...so we sent a lot of options.Hope this helps...truly. mommy cat
    mommy cat 1654 Replies
    • August 12, 2007
    • 00:52 AM
    • 0
    Flag this Response
  • Hey there Unregistered, I would just like to begin by saying that your story is truely heartwrenching...and I believe that anyone who reads it, would agree with me. This is the kind of situation that you never wish upon anyone...not even your worst enemy, but the strength you are portraying just by obtaining the courage to write to this forum is amazing! You are doing exactly what any successful mother would do for the health and well-being of their child! Take a deep breath and pat yourself on the back....you have come this far....thats the first step. Secondly, I cannot stress to you enough that you are not alone in this. I am from Melbourne, Australia and I am 25. Back in June 2007 I was diagnosed with CFS/ME...now I am going to jump in right now and clarify that I am not implying that your daughter has this too...I am just giving the background information as to my condition leading up to my own very first visit to BioSet on Friday 10th August 2007. I have been reading this thread thoroughly and I would like to let you know that Mommy Cat is 110% correct in advising BioSet/NAET for your daughter...and I second that notion. In my books, Mommy Cat has not been wrong about anything that she has put forth in discussion-for it was she, who advised me to see "deeper" into the scheme of things and as a result, I am feeling much better than I have, in at least 11 years. I explained my situation on WD earlier this year, and after the CFS/ME diagnosis..Mommy Cat and two other friends, advised me to look into BioSet/NAET. They told me that it would be beneficial to my health. And after my first treatment at the Melbourne Clinic of Allergy Elimination...their advice was substantiated. I feel so much better just after one treatment. This is not a Placebo effect of any description. It is very real. I hear you questioning the description, procedure of BioSet/NAET and also the location of clinics. Here is some light reading that I hope will help your daughter, and your whole family..Where exactly do you live in Australia...I may be able to help you with extra clinic locations if I know exactly where... BioSET (Bioenergetic Sensitivity and Enzyme Therapy) is a program developed by Dr. Ellen Cutler.BioSET consist of three approaches to obtain optimal health: Detoxification, Enzyme Therapy and Allergy Elimination Treatments based on energy medicine. These 3 aspects are carefully balanced to promote healing and maintain wellness. One without the others is not enough to establish whole body health.1. DetoxificationEveryday we are bombarded with toxins from internal and external sources.... Internal sources consist of undigested food, genetic toxins we inherit, and emotional stress. External sources consist of physical stress / trauma, polluted air, cosmetics and body care items, chemically treated water we drink and bathe in, food that has been exposed to chemicals antibiotics, hormones and pesticides, radiation from all sources of technology ....(microwaves, mobile phones, security screenings, computers, etc.)...environmental toxins, and medications.The body can efficiently handle a certain amount of toxins through the normal detoxification organs, skin and lymphatic system. The manageable level of toxins is different for everybody.....When the number of toxins in the body are more than it can handle, a person will begin to experience allergies, acute and chronic health problems of all kinds. With proper toxicity evaluation done with BioSET, it is determined which organ(s) and system(s) are effected by the build up of toxins and a homeopathic / herbal remedy is prescribed..... The effects are quick and detoxification should be done at least once a year depending on life style. 2. Enzyme TherapyWhen a person is sensitive to a food, when eaten, it does not break down in the digestive system.....Not only do you not absorb the nutrients and vitamins from this food...but unbroken down food particles then pass through a weakened intestinal wall and get into the blood stream. The food particles, now being a foreign object in the body, become antigens causing the immune system to react, sending antibodies to investigate this invasion. This sets off a chain reaction of events basically causing the body to attack itself leading to auto immune disorders, illness, allergies and inflammation.The first step in stopping this self attack on the body is by using a Digestive enzyme.... In BioSET they use plant enzymes to break down foods, allowing for absorption and utilization of the minerals and vitamins. By doing this, no food particles pass through the intestinal wall, therefor no self attack from the immune system.The second step is to ensure proper bacterial growth in the intestine by using a Probiotic enzyme....A good Probiotic enzyme will balance the good bacteria and help provide a healthy intestinal wall lining to ensure no food particles pass through.The third step is to cut down the number of viruses, bacteria, parasites, and decrease the inflammation effecting the intestinal wall and it’s lining. This is done by using an enzyme called Protease Plus. This enzyme, when taken on an empty stomach, acts as a natural anti - viral, anti - bacteria, anti - parasite, and anti - fungal product. Protease Plus also purifies and cleans the blood by removing dead cells. When taken with food is simply breaks down protein.These three enzyme products are the basic plan of enzyme therapy If your body is needing extra metabolic enzyme support, other enzyme products are available.3. Allergy Elimination: Allergic responses based on meridian therapy Every living and non living thing has an energy field....Sometimes when energy fields come together they don’t interact well and cause conflict. When this happens in the body there is a chain reaction of events....It starts with the formation of energy blockages within the meridians (pathways where energy flows in the body). Since each organ has it’s own meridians, these blockages can also effect organ function....These energy blockages will also stimulate the nervous system, which sends a message to the brain asking the immune system to respond to the threatening item. This is the allergic reaction, which can form in a great variety of symptoms.In BioSET these energy blockages are removed during treatment and the body is re-educated not to respond to the offending item. You may at this stage be wondering..."Is it safe for my child to have this?"But rest assured....... Bioset For Babies and Chilren BioSET is most effective for babies and children of all ages! Colic, reflux/vomitting, wind, diarrhea, constipation, eczema, skin irritations are some of the most common symptoms that are treatable for babies with BioSET.....Symptoms commonly treated for other young children are acne, fatigue, stomachaches, headaches, reactions to insect bites and eczema. For children too young to be tested directly, a parent can act as a surrogate tester. I also read the other day, that BioSet is safe, and beneficial for pregnant women....statistics showed that if a mother has BioSet whilst pregnant, the baby will be born with little or no allergies...in comparison to any siblings that were not exposed to BioSet in the womb. I have listed just a few of the common conditions treated by BioSet...ther are many more.....Acne, Acid Reflux, ADD, ADHD, Anxiety, Appetite fluctuations, Asthma, Bad Breath, Bloating, Burping, Body Odor, Breast Pain / Swelling, Chronic Fatigue Syndrome, Colitis, Constipation, Cough, Depression, Diarrhea, Digestive Troubles, Ear Aches / Infections / Congestion, Excema, Eye Irritations, Fatigue, Firbromyalgia, Food Cravings, Frequent Colds, Gas, Gum Irritation, Hay Fever, Headaches, Heart Burn, High Altitude Problems, Hot Flashes, Hoarseness, Humidity Discomfort, Hyperactivity, Indigestion, Insomnia, Irritable Bowel, Intestinal Cramping, Itchy Throat / Mouth, Joint Pain / Swelling, Infections, Loss of Taste / Smell, Loss Of Muscle Tone, Metallic Taste in Mouth, Moodiness, Muscle Twich, Myalgic Encephalomyelitis, Nasal Congestion, Nausea, Nervous Stomach, Night Sweats, Numbness, Post Nasal Drip, PMS, Restless Leg, Shortness of Breath, Sinusitis, Skin Rash / Itch / Burning, Sleeping Problems, Sneezing, Sore Throat, Stomach Discomfort, Swollen Glands, Teeth Pain, Tongue Swelling, Throat Constriction, Tightness in Chest, Tires Easily, Weakened Immune System, and Yeast Infections. Hope this helps....:) Emily
    EmilyMcN 67 Replies
    • August 12, 2007
    • 04:52 AM
    • 0
    Flag this Response
  • Now, NAET...Nambudripads Allergy Elimination Therapy (NAET) is a technique used to eliminate allergic reactions to common foods, chemicals, plants, animal dander and other substances.....A treatment consists of muscle testing and spinal acupressure. The theory behind NAET is that allergies are a result of energy blockages in the body caused by contact with the offending substances.....NAET releases the blockages and reprograms the body so it learns not to react to the allergen as a threat.Discovered by Dr. Devi S. Nambudripad, a Californian acupuncturist, chiropractor, kinesiologist and a registered nurse.Nambudripad’s Allergy Elimination Technique is an acupuncture-based technique that stops the acupuncture meridian system from having abnormal responses to “allergic” substances that are normally harmless. Allergic reactions......whether to food, household chemicals, dust, pet dander, pollen, mold or other stimuli....can cause a rapid change in many body systems, producing a wide variety of symptoms...According to acupuncture theory, these allergens cause an altered reaction in the channels of energy that traverse the body....These channels are referred to as “meridians” and are the focus of NAET treatment: correcting an imbalance in the meridians results in a change in the physical body. In NAET the “allergy testing” is not a test of an allergic effect on your body, but on the meridian system. In acupuncture theory, the control of energy (“chi”) through the meridians is attained by stimulation of acupuncture points along the limbs and trunk of the body.....This balancing of one meridian to another can produce the desired balance in the body.... NAET makes a much more selective use of this knowledge: many or all meridians may react to specific substances. NAET technique permits the practitioner to reset the way the meridians respond to individual allergens.... rather than to other meridians alone. Thus, what NAET accomplishes in a single treatment is somewhat akin to the software reprogramming and rebooting of a computer.... Obviously, the human body is not a computer-like machine, nor is its health dictated by some “software” program.... However, health and balance in the body are the result of a balancing of the “systems” of the body, not the haphazard result of luck and good genetics.... The meridian systems have long been demonstrated to play a very large role in this balancing.Treatment is administered to a patient while they are holding the allergen in a glass vial. Acupuncture points located at specific spinal nerve root level along the spine are gently stimulated by hand, or in some cases by a mechanical instrument.... This re-sets the meridian over or under sensitivity to the substance.... Then patients rest for 20 minutes while holding the same vial after additional points are stimulated on the upper and lower limbs.... The patient is instructed to avoid the allergen for 25 hours, permitting the meridian system to process the correction. At that point the meridian system will no longer react improperly to the former allergen. Most notions of allergy suffering are defined by common everyday usage of the term.... Pollen, grass and dust can affect the eyes, nose and throat....dairy, eggs and wheat can cause gastro-intestinal pain. Some allergens, through repeated exposure to the body, cause the production of immunoglobulins that can be accounted for in various allergy tests.... However, many patients suffer significant allergic symptoms, to both food and environmental stimulants, and have no “allergies” according to a traditional test. In these patients, allergens may not result in immunoglobulin production, but may cause a reaction in an entirely different way...In acupuncture theory, the presence of the allergen, felt as a bioelectric frequency, unique to the allergen, causes a change in flow of energy through the acupuncture meridians. This occurs because the system has been programmed by repeated exposure to send the signal to the body that an allergen is present. Current theories account for this development as an indiscriminant defensive response on the part of an overloaded autonomic nervous system. The stress affecting the “system” may be of physical, mental/emotional, chemical or environmental origin, and may have no direct relationship to the allergen. Furthermore, the response of the allergen/meridian alarm response to a specific allergen may be different from one person to another. This means that “allergies” may include a wide variety of responses to individual substances. Wheat allergies are known to affect the large intestine, but also the lungs, skin, sinuses and nervous system as well as the stomach and musculo-skeletal system. Allergic reactions may alter the metabolism by preventing the body from absorbing and metabolizing correctly. Thus, an allergy to a “b” vitamin can produce little immediate reaction, but if severe enough, may result in poor absorption. The only symptom may be a deficiency of this vitamin, which is rarely connected to primary allergic sensitivity. This misconception may be due to the variety of sensitivity reactions within the meridian system which run from hypo-sensitive (lowered) to hyper-sensitive (elevated). NAET testing and treatment permit the balancing of the system towards the allergen, regardless of the effect on the body, rather than trying to change the body’s suffering without regard to the cause. digestive problems, acne, skin rashes, eczema, nausea, arthritis, headaches, hypoglycemia, fibromyalgia, fatigue and chronic fatigue syndrome, and anxiety, depression, asthma, eating disorders, hayfever, sinusitis, multiple chemical sensitivities, premenstrual syndrome, hives, heartburn, food poisoning, ear infections, bronchitis, and diarrhea. This link may also be of beneficial assistance to you http://naet.com/subscribers/drasia.html I hope this helps... Emily :)
    EmilyMcN 67 Replies
    • August 12, 2007
    • 04:52 AM
    • 0
    Flag this Response
  • I would like to start by thanking both of you for your advise, I will definately look into it. We are in Brisbane by the way. The only reason I am strong is because my daughter is the most positive person I have ever met in my whole life. She has never complained about anything, as a matter of fact while we could still understand her talking she used to think that she wasn't sick at all. How can I be anything but strong when she doesn't think there's anything wrong with her. We have tried acupuncture and some detox tablets before, while she was still eating. she seemed to get a bit worse. the acupuncture just made her cry and sad the whole time she had the needles on and afterwards she was very sensitive to noise and light for hours. She doesn't eat normal food anymore either, we PEG feed her straight into her belly special food that ocontains everything that she would be getting from a very balanced meal plus a lot of purified water. I'm glad to hear that BIOSET/NAET is working for you, and I will definately give it a go, anything is worth a try at this stage. The neuros have said that we probably wont ever find out what is taking my baby but if I can find something that stops it in its tracks or even just slows it down it's a bonus and we might have a bit more time with her. Again thank you
    Anonymous 42789 Replies
    • August 14, 2007
    • 01:08 PM
    • 0
    Flag this Response
  • You truly are so very welcome! We are praying for your daughter and your family. Best wishes....mommy cat
    mommy cat 1654 Replies
    • August 15, 2007
    • 02:24 PM
    • 0
    Flag this Response
  • You are more than welcome. As you know...being in Brisbane gives you a head start in everything. Brisbane and Sydney are so far ahead of the rest of the country....you are in a good place! :) Keep in touch.We are thinking of you all. Emily
    EmilyMcN 67 Replies
    • August 17, 2007
    • 09:30 AM
    • 0
    Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • You are so welcome!! We are glad to help. We were sick and desperate when we entered this forum. I promised if I got my health back I would spend time in this forum helping others. I did, so I am. Please keep in touch and best of luck!! regards,mommy cat:)
    mommy cat 1654 Replies
    • August 17, 2007
    • 02:52 PM
    • 0
    Flag this Response
  • Please visit the following site: http://www.ninds.nih.gov/disorders/adrenoleukodystrophy/adrenoleukodystrophy.htm Your daughters condition caught my eye and looks very much like the condition contained in this site...
    penybobeny 17 Replies
    • August 20, 2007
    • 03:15 PM
    • 0
    Flag this Response
  • im very sorry about ur daughter. what about creutzfeldt jakobs disease?
    Anonymous 42789 Replies
    • September 2, 2007
    • 04:29 PM
    • 0
    Flag this Response
  • Hi Unregistered, It is possible that your daughter is sufferring from a severe b12 deficiency. In this kind of early onet there is often a combination of problems like inability to absorb, inability to convert inactive cobalamins (ie hydroxyb12 and cyanob12) to the two natural active forms, methyb12 and adenosylb12. This is often accompanied by a similar problem with folate. If this is the case there is a significant possibility that you and/or your husband might have some portion of the problem which could show up as a lot of nonspecific symptoms. THe hypothesis is easy to test. Come on over to http://forums.wrongdiagnosis.com/showthread.php?p=94012&posted=1#post94012 and look at the list of symtoms and talk with us. We do not have a good description of the various modes of these deficiencies in children. B12 deficiencies can be a cause seizures and reversable coma at any age.
    Freddd 3576 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.