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My 13 Year Old Daughter, PLEASE HELP
My 13 year old daughter has been feeling poorly for two years now. She got her vaccinations in August of 2007. Her health started going downhill in September of 2007. My daughter has a headache every single day. She has tried all over the counter and prescribed medication, but still no relief. She has also been experiencing stomach pain in her upper right and left abdomen. Sometimes she compains of sharp stabbing pain in her lower right abdomen. The pain in her stomach doubles her over. Much of the time, she is nauseated. At one point, her appetite was decreased, and was not able to keep food down. She has complained of dizziness and joint pain as well. Sometimes her joints just ache. They also pop out probably 15 times a day.Everytime she moves either her elbow or knees pop. She has had three fevers for no reason, and one after the colonoscopy(99.1). We have been to doctor after doctor, but it seems there is no answer. We are seeing a gastroenterologist currently, and she is running tests. We have seen a neurologist, rheumatologist, pediatrician, and two cardiologists. She is also seeing an autonomic specialist/neurologist right now that did some blood work, and it came back her Co- Q10 was low, and her vitamin D was low. She is on supplements currently. She has had a colonoscopy, which she just had done two weeks ago. They found a sore in her stomach, and that came back that she was lactose intolerant. We have known that for quite some time. She has been on a lactose free diet for over six months, and it has not helped her stomach.She was admitted into the hospital for observation because we were checking her blood pressure when she was feeling really bad, and it was 63/47. They wanted to make sure she would be okay for anesthesia. It was a wrist cuff, so the doctor told us to get a small arm cuff. It has been running fine, but not all of the time is it low. At one time it was 91/ 48. She has had an MRI, Exercise test(almost passed out, was removed from treadmill before anything happened), tons of bloodwork, the colonoscopy, and so many others. She had an ANA panel done, but it came back negative. Three doctors have suspected that she has lupus, but all of the tests come back fine. The last ANA panel came back at 0.9. I am not sure if it is possible for a test to come back negative, and her still have it. We are so desperate for answers. Since this all started, she has had to give up many things she like to do(skateboarding, tennis,etc). She has tried to get back out there, but her body just can't handle it. I just want her to feel better. Thank you for taking the time to read this.
Have you been to anyone at Cleveland Clinic? My doctors there are great, and I have many similar symptoms to your daughter.
Joints popping out - Has she been checked for Ehlers-Danlos Syndrome? A Rheumy should recognise this, but an Orthopedist might be best. Actually every pediatrician should know about it. I can almost guarantee she has it if they dislocate that often. I saw George Balis at CCF in Orthopedics.
Low BP, stomach problems, purple toes, passing out - could all be from autonomic dysfunction. Check out the Dysautonomia Forum here. There are cardiologists at CCF who can work on the low BP/passing out. Eric Jaeger is one. There is also a pair of pediatric doctors at Case Western, Gisela and Thomas Chelimsky in cardiology and gastro, who specialise in dysautonomia.
Joint swelling and pain, fever - Ehlers-Danlos doesn't usually cause joint swelling, but there are a few autoimmune diseases that can. ANA is not enough to rule out autoimmune. She should be checked for specific antibodies. In addition, some autoimmune diseases don't show up in bloodwork. If bloodwork is all clean, Rheumies can x-ray her joints to look for the "classic" signs of joint degeneration caused by RA. Another possibility is Sjogren's, which can cause joint pain and swelling without joint degeneration. It's not unusual for these antibodies (SSA and SSB) to be negative but still have Sjogren's. She would need a lip biopsy if the bloodwork is negative. Long term, Sjogren's causes dry itchy eyes and dry mouth, but it can attack the nervous system long before the eyes and mouth.
The autoimmune disease can be very important, as they are a known cause of peripheral neuropathy, which can include all the autonomic dysfunction symptoms your daughter has. Here's the MedHelp page for peripheral neuropathy. I also see a neurologist at CCF to manage this. It is possible that the vaccine didn't "cause" your daughter's symptoms, but rather set off an autoimmune disease that was already lying in wait.
http://www.medhelp.org/medical-information/show/74
I hope this has given you some things to think about. Send me a message if you have any more questions or want more info. Sometimes I'm not on every day, and I might miss your post here.
Joints popping out - Has she been checked for Ehlers-Danlos Syndrome? A Rheumy should recognise this, but an Orthopedist might be best. Actually every pediatrician should know about it. I can almost guarantee she has it if they dislocate that often. I saw George Balis at CCF in Orthopedics.
Low BP, stomach problems, purple toes, passing out - could all be from autonomic dysfunction. Check out the Dysautonomia Forum here. There are cardiologists at CCF who can work on the low BP/passing out. Eric Jaeger is one. There is also a pair of pediatric doctors at Case Western, Gisela and Thomas Chelimsky in cardiology and gastro, who specialise in dysautonomia.
Joint swelling and pain, fever - Ehlers-Danlos doesn't usually cause joint swelling, but there are a few autoimmune diseases that can. ANA is not enough to rule out autoimmune. She should be checked for specific antibodies. In addition, some autoimmune diseases don't show up in bloodwork. If bloodwork is all clean, Rheumies can x-ray her joints to look for the "classic" signs of joint degeneration caused by RA. Another possibility is Sjogren's, which can cause joint pain and swelling without joint degeneration. It's not unusual for these antibodies (SSA and SSB) to be negative but still have Sjogren's. She would need a lip biopsy if the bloodwork is negative. Long term, Sjogren's causes dry itchy eyes and dry mouth, but it can attack the nervous system long before the eyes and mouth.
The autoimmune disease can be very important, as they are a known cause of peripheral neuropathy, which can include all the autonomic dysfunction symptoms your daughter has. Here's the MedHelp page for peripheral neuropathy. I also see a neurologist at CCF to manage this. It is possible that the vaccine didn't "cause" your daughter's symptoms, but rather set off an autoimmune disease that was already lying in wait.
http://www.medhelp.org/medical-information/show/74
I hope this has given you some things to think about. Send me a message if you have any more questions or want more info. Sometimes I'm not on every day, and I might miss your post here.
My daughter is now 14, and there is still no answer as to why she is experiencing this array of symptoms. She is having joint pain--sometimes it is to the point where she can't put pressure on her knees.Her knees and elbows are swollen sometimes. She is still having terrible headaches. The doctor put her on Elavil, and it seems to help the first couple of days, but then once her body adjusts to the med, and the headaches return(they are moving the dosage up every week; starting at 10mg going to 40mg). She is constantly nauseous, and has pain in upper abdomen. Her joints pop 20-30 times a day. Her toes are purple, and her ankles are swollen. This is the update, and we are seeing the doctor in January. We have to travel out-of-state to see her doctor.None of the doctors in our surrounding areas have helped her. Please help my daughter...she has been sick going on three years.
Think many are sick in this country due to vaccinations. If your daughter got sick right after the vaccination it would seem to indicate that is the problem. If you examine what is in these vaccination you can understand why she is sick. They have to kill the virus so they use formaldehyde. They keep it clean with Triton X100(stong detergent). They use Thimerosal(mercury) as a antibacterial agent. Mercury is responsible for many of the autoimmune disease we are seeing in this country. Many people have this in their mouth due to their amalgam fillings which is the major soarce of mercury poisoning. Many of the gulf war soldiers are sick because of the many vaccinations they have to get. If you get a book on natural healing it will tell you the supplements you can take to get the mercury out of the body. Along with the supplements it is important that she eat alot of the fruits and vegetables which will alow her body to detoxify itself. I am sure if you see a Natural Healer they will tell you the same. The body can heal itself if given what it needs. Good Luck.
My pleasure - glad to be of help. It was Myown who sent me a message asking me to post an answer to your questions.
I can't stress enough that Low Dose Naltrexone might be a low cost and extremely effective answer to your daughter's problems.
Best of luck to both of you!
Mike H
I can't stress enough that Low Dose Naltrexone might be a low cost and extremely effective answer to your daughter's problems.
Best of luck to both of you!
Mike H
Here's four - not a lot in your area:
James Frackelton Westlake 44145 440-835-0104 MD
Douglas Weeks Medina 44256 (330) 764-4242 MD
Clifford Sonnie Medina 44256 (330) 764-4242
Jeff B. Romig MD Uniontown 44685 (330) 899-9725
Make sure to call first and ask if they use Low Dose Naltrexone.
Good luck!
Mike H
James Frackelton Westlake 44145 440-835-0104 MD
Douglas Weeks Medina 44256 (330) 764-4242 MD
Clifford Sonnie Medina 44256 (330) 764-4242
Jeff B. Romig MD Uniontown 44685 (330) 899-9725
Make sure to call first and ask if they use Low Dose Naltrexone.
Good luck!
Mike H
I'm so sorry to hear about your daughter's problems. No matter what the cause, if they were stimulated by vaccinations, then they are quite possibly autoimmune disorders.
Low Dose Naltrexone is an FDA certified drug that has been through phase 1 clinical trials for Crohn's disease. It caused total remission in 2/3 of the patients in just 3 weeks in the clinical trials. It failed to help only 12% of the patients.
Phase 1 clinical trials have also been held on multiple sclerosis patients. The results have not yet been published, but advance news is that the study found very good results.
This drug seems to help all autoimmune diseases. It also helps cancer, autism, chronic viral hepatitis (B and C) and many other conditions.
There are no side effects. It costs only $30 per month without health insurance.
Naltrexone was designed and approved for another application. It was used for 20 years in very large 50 mg doses. Near the end of the twenty years someone started experimenting with much smaller 3 mg doses (Low Dose Naltrexone), specifically for HIV and cancer patients. What he found was that it works very well - in fact he has HIV patients that have been on this drug for 20 years now that have have never needed another drug and never lost their T cells.
But the drug patent ran out after twenty years and the drug went into the public domain. Because the drug companies no longer have a proprietary commercial interest in it, they resist its mainstream use and research into it applications. The clinical trials on LDN for Crohn's and MS were the result of PATIENT fund-raising efforts. The FDA and the NIH are captive agencies to drug companies and so have not funded any research into this drug's novel applications. They do not want an inexpensive drug out there that is safe, has no side effects and outperforms everything they have on the market.
Conventional therapy for Crohn's include surgical removal of inflamed bowel and treatment with steroidal anti-inflammatories. After the FDA clinical trials every doctor in the world should be using this as the first option. But they are completely ignoring it.
Alternative MDs are using it extensively on a wide variety of conditions with great success. But not the conventional doctors.
Naltrexone is an endorphin antagonist. When a very low dose (3-4.5 mg) is taken orally it attaches to about ten percent of the body's cell membrane-bound endorphin receptors. This blockade lasts about four hours. The result is a compensatory mechanism by the blockaded cells that induces an over-production of the body's natural endogenous endorphins and enkephalins.
In the last decade science has found that endorphins and their receptors are not just our pleasure buttons. White blood cells (immune cells) have a disproportionately large number of endorphin receptors on their cell membranes. Endorphins and our other endogenous opioid cell messengers are actually the directors of our immune systems. They control the proliferation and differentiation of our immune cells. In short, they are the definitive immuno-modulators. They optimize immune function. That is why LDN works on virtually all autoimmune diseases, which are the products of dysfunctional immune responses.
Since LDN and endogenous opioids work so far "upstream" of the immune system, that also explains why LDN works on cancers and a wide variety of disease conditions. The function of the immune system is to deal with all these diseases.
By the way, I am taking LDN for my hepatitis c. In three months it took my viral load down from 1.6 million to 58 thousand, and it has stayed there! A 98% decrease. Millions of people are dying from this disease and I am one of a few hundred being saved by LDN.
Your best bet might be to find an integrative medicine physician. I can locate one close to you if you tell me what area you live in.
Best regards,
Mike H
Low Dose Naltrexone is an FDA certified drug that has been through phase 1 clinical trials for Crohn's disease. It caused total remission in 2/3 of the patients in just 3 weeks in the clinical trials. It failed to help only 12% of the patients.
Phase 1 clinical trials have also been held on multiple sclerosis patients. The results have not yet been published, but advance news is that the study found very good results.
This drug seems to help all autoimmune diseases. It also helps cancer, autism, chronic viral hepatitis (B and C) and many other conditions.
There are no side effects. It costs only $30 per month without health insurance.
Naltrexone was designed and approved for another application. It was used for 20 years in very large 50 mg doses. Near the end of the twenty years someone started experimenting with much smaller 3 mg doses (Low Dose Naltrexone), specifically for HIV and cancer patients. What he found was that it works very well - in fact he has HIV patients that have been on this drug for 20 years now that have have never needed another drug and never lost their T cells.
But the drug patent ran out after twenty years and the drug went into the public domain. Because the drug companies no longer have a proprietary commercial interest in it, they resist its mainstream use and research into it applications. The clinical trials on LDN for Crohn's and MS were the result of PATIENT fund-raising efforts. The FDA and the NIH are captive agencies to drug companies and so have not funded any research into this drug's novel applications. They do not want an inexpensive drug out there that is safe, has no side effects and outperforms everything they have on the market.
Conventional therapy for Crohn's include surgical removal of inflamed bowel and treatment with steroidal anti-inflammatories. After the FDA clinical trials every doctor in the world should be using this as the first option. But they are completely ignoring it.
Alternative MDs are using it extensively on a wide variety of conditions with great success. But not the conventional doctors.
Naltrexone is an endorphin antagonist. When a very low dose (3-4.5 mg) is taken orally it attaches to about ten percent of the body's cell membrane-bound endorphin receptors. This blockade lasts about four hours. The result is a compensatory mechanism by the blockaded cells that induces an over-production of the body's natural endogenous endorphins and enkephalins.
In the last decade science has found that endorphins and their receptors are not just our pleasure buttons. White blood cells (immune cells) have a disproportionately large number of endorphin receptors on their cell membranes. Endorphins and our other endogenous opioid cell messengers are actually the directors of our immune systems. They control the proliferation and differentiation of our immune cells. In short, they are the definitive immuno-modulators. They optimize immune function. That is why LDN works on virtually all autoimmune diseases, which are the products of dysfunctional immune responses.
Since LDN and endogenous opioids work so far "upstream" of the immune system, that also explains why LDN works on cancers and a wide variety of disease conditions. The function of the immune system is to deal with all these diseases.
By the way, I am taking LDN for my hepatitis c. In three months it took my viral load down from 1.6 million to 58 thousand, and it has stayed there! A 98% decrease. Millions of people are dying from this disease and I am one of a few hundred being saved by LDN.
Your best bet might be to find an integrative medicine physician. I can locate one close to you if you tell me what area you live in.
Best regards,
Mike H
You're more than welcome.
After you get info from a Holistic doctor, you may need to bring that info back to the "Specialists." So though they didn't help in the diagnoses, you still might need them.
You might also want to ask the Holistic doctor about "low dose Naltrexone."
I read about it on another forum. It is something worth studying and bringing to the Holistic doctor www.lowdosenaltrexone.org
It is being used "off label" for problems with immune system etc. A study on Crohns was completed and they had excellent results. There is alot of info on the site and how it regulates the immune system. Maybe this would help your daughter, but you would have to discuss that with the Holistic doctor.
Take good care,
MO
After you get info from a Holistic doctor, you may need to bring that info back to the "Specialists." So though they didn't help in the diagnoses, you still might need them.
You might also want to ask the Holistic doctor about "low dose Naltrexone."
I read about it on another forum. It is something worth studying and bringing to the Holistic doctor www.lowdosenaltrexone.org
It is being used "off label" for problems with immune system etc. A study on Crohns was completed and they had excellent results. There is alot of info on the site and how it regulates the immune system. Maybe this would help your daughter, but you would have to discuss that with the Holistic doctor.
Take good care,
MO
Thank you so much for you reply! You are truly the first person that believes it could be Gardasil. The doctor read the medical records and said, "it says she was not given Gardasil". I told the doctor that I did not want the Gardasil. I was telling her it could have been a mistake. I guess she just didn't think that was possible. I will definitely look into a Holistic internist. We have been going in circles trying to find the right doctor. We have traveled the whole east coast trying to find an answer. All of these doctors we have been to just didn't look at it in one big piece. They were trying to give her meds for each symptom instead of finding out what was wrong. Again, thank you so much!
I am not sure if there is a test to show whether it is in her system or not, but it probably would be gone in two years.
----------------------------------------
Well, this is something that your doctors should have known to do immediately and it should not be something that you should have to figure out. But obviously even with all the info you have given them, they haven't been able to figure out that your daughter may have had the Gardasil vaccine.
I am not surprised though because I self diagnosed myself for the last 4 years and my doctors foo fooed everything I said and now come to find out that I was right about everything! That scares me too because I don't have one iota of confidence left as far as doctors being able to diagnose correctly.
I feel we as patients, shouldn't have to diagnose ourselves - they are the ones who went to school for this stuff. I really think that many doctors leave their "logic" on the front steps of Medical School and never return to pick it up. Its a cookie cutter approach to everyone.
But in your daughters case and with all the info you provided them as far as symptoms, her getting sick after vaccinations, ,,,,,they should have IMMEDIATELY tested to see if she had antibodies from the Gardasil.
From what I remember, I think the antibodies don't last or they are not sure how long they last or something like that. Thats why they should have tested right away IMO. But, the vaccine connection obviously didn't cross their mind. It just totally amazes me how doctors just don't know how to put pieces of a puzzle together. It annoys me to no end.
AND EVEN IF you didn't say you don't know if she had Gardisil, that SHOULD HAVE BEEN their first question....."did she have a Gardasil vaccine"? But then again, the Conventional Doctors don't think anything is wrong with this vaccine, and thats obvious because they "sell it." But after reading your daughters symptoms, EVEN IF you didn't mention she had vaccines a month prior to getting sick, I still would have asked you about Gardasil because I know alot of kids get it at that age.
Also, the other vaccines, I don't know what vaccines kids get at that age - Hep B? Because back when I was a kid, I don't remember getting vaccines at that age. I don't know if maybe you just moved here to the US and possibly needed to get your daughter vaccines to enter school or possibly you were traveling from here to another country? So, I don't know, but my guess still holds that she did probably have the gardasil vaccine.
I feel really bad for both you and your daughter. I hope your daughters immune system somehow straightens out. If I were you, I would try to find a holistic Internist. I say this because a Holistic doctor would not be in favor of Gardisil and he would be able to tell you why and what the vaccine does when given. And "THE WHY" is ALWAYS the answer to "THE HOW" can we fix this, ya know?
Conventional doctors lean more towards "WHAT."
WHAT can we give this girl to stop these "symptoms" - thats always their answer and that winds up being more drugs to correct the symptoms and investigation of the root cause is sometime overlooked then.
It makes me very upset that this vaccine hasn't been pulled yet - if it ever will. They are talking about giving it to little boys now too - if they haven't already started.
I hope you find answers soon. I hope that my mentioning of the Gardasil points you in the right direction.
Please post and let us all know how things go and I truly hope that your daughter gets well soon.
MO
----------------------------------------
Well, this is something that your doctors should have known to do immediately and it should not be something that you should have to figure out. But obviously even with all the info you have given them, they haven't been able to figure out that your daughter may have had the Gardasil vaccine.
I am not surprised though because I self diagnosed myself for the last 4 years and my doctors foo fooed everything I said and now come to find out that I was right about everything! That scares me too because I don't have one iota of confidence left as far as doctors being able to diagnose correctly.
I feel we as patients, shouldn't have to diagnose ourselves - they are the ones who went to school for this stuff. I really think that many doctors leave their "logic" on the front steps of Medical School and never return to pick it up. Its a cookie cutter approach to everyone.
But in your daughters case and with all the info you provided them as far as symptoms, her getting sick after vaccinations, ,,,,,they should have IMMEDIATELY tested to see if she had antibodies from the Gardasil.
From what I remember, I think the antibodies don't last or they are not sure how long they last or something like that. Thats why they should have tested right away IMO. But, the vaccine connection obviously didn't cross their mind. It just totally amazes me how doctors just don't know how to put pieces of a puzzle together. It annoys me to no end.
AND EVEN IF you didn't say you don't know if she had Gardisil, that SHOULD HAVE BEEN their first question....."did she have a Gardasil vaccine"? But then again, the Conventional Doctors don't think anything is wrong with this vaccine, and thats obvious because they "sell it." But after reading your daughters symptoms, EVEN IF you didn't mention she had vaccines a month prior to getting sick, I still would have asked you about Gardasil because I know alot of kids get it at that age.
Also, the other vaccines, I don't know what vaccines kids get at that age - Hep B? Because back when I was a kid, I don't remember getting vaccines at that age. I don't know if maybe you just moved here to the US and possibly needed to get your daughter vaccines to enter school or possibly you were traveling from here to another country? So, I don't know, but my guess still holds that she did probably have the gardasil vaccine.
I feel really bad for both you and your daughter. I hope your daughters immune system somehow straightens out. If I were you, I would try to find a holistic Internist. I say this because a Holistic doctor would not be in favor of Gardisil and he would be able to tell you why and what the vaccine does when given. And "THE WHY" is ALWAYS the answer to "THE HOW" can we fix this, ya know?
Conventional doctors lean more towards "WHAT."
WHAT can we give this girl to stop these "symptoms" - thats always their answer and that winds up being more drugs to correct the symptoms and investigation of the root cause is sometime overlooked then.
It makes me very upset that this vaccine hasn't been pulled yet - if it ever will. They are talking about giving it to little boys now too - if they haven't already started.
I hope you find answers soon. I hope that my mentioning of the Gardasil points you in the right direction.
Please post and let us all know how things go and I truly hope that your daughter gets well soon.
MO
I told the nurses not to give her the shot, but it was very hectic in the office. They had pulled all three shots already and they were in a bunch in the nurse's hand. If she wasn't paying attention, she could have easily picked the wrong shot to put on the counter. I am worried that they possibly gave her the Gardasil by mistake. I am not sure if there is a test to show whether it is in her system or not, but it probably would be gone in two years. Thank you for your reply.
Sorry to hear this.
You mentioned she had vaccinations. Was Guardasil one of the vaccinations?
You mentioned she had vaccinations. Was Guardasil one of the vaccinations?
I do not recall her being bitten by anything, but at one point they felt it was her gallbladder. The doctors were going to remover her gallbladder, but they felt more testing needed to be done . Yes, it is very worrying. They did find that she has POTS, but the doctors don't think that is the only thing going on. They said it doesn't explain all of her symptoms. I just want her to get back to the healthy and active girl she was before all of this.
I was thinking Gall bladder but I feel the Doctor would have spotted that and done the tests ,the severe pain on the right under the ribs radiating up into the shoulder is very often Gall bladder. What about Lyme a regular Lyme always seems to come back negative, has she been bitten by anything.What about allergies have you checked that out , It is worrying isnt it, have they come to any conclusion about her health ?
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