myrose

WHEW!!! Can't comment yet...not done reading it! I think I am getting over my head here in this though.....I will finish it later. Very interesting Caryn

Yes Thank You, the link was correct. I am now not sure how to get the lot numbers and manufacturer name??? I still do not know why she received 2 chicken pox shots. I always remembered it just being one. Were your children/child given vaccinations? If so, did it include two of the Chicken Pox?

Chemar....I accidently placed my post on the Pandas board. I realized it only after reading your comment. How do I get the link on the TICS portion of the board? Just copy and paste? Thanks Cheri...

Betty04, Thanks so much for the information. I had no idea I could do this. How do I do it???

Well after 2 years of researching my families history and contacting one after another. I FINALLY got some answers today. Its been a long road and this person living in Germany was my last hope. I have found out today that my Father displayed signs of Tourettes. He had a constant grunting tic and a movement in which he raised his thumb over his shoulder. No one knew this in my family and as I sit here thinking and thinking I think I may have remembered this but was always told he got it from the war. From the knowledge I have gained so far throughout this whole ordeal I have come to the conclusion that what I am being told is that my Dad indeed had tics and probably TS. My parents were 22 years apart in age, the last time I saw my Dad....well I cannot remember. They divorced when I was really young. It appears in his case the tics never went away and continued throughout his old age. My Father was born in 1925, he is still alive and from what I am told doesn't look a day his age at all. So I guess I can somewhat understand where the tics came from now. What I am puzzled about is this: My Father had two daughters with his first wife....he had my brother and I after he married my Mom. We later found out that he had another child that we never knew about. We did meet this grown man a few years back....he has 6 kids now....all boys. So out of 5 children (2 boys, 3 girls) NO ONE else has tics or anything like it. Also my 1/2 sisters have 5 and 6 children...a mix of boys and girls....NO TICS. My brother has triplets (2 boys and 1 girl) NO TICS there either. I have only one little girl and she started the tics after her 9 shots. I will also add that one of my 1/2 sisters daughters has 2 children of her own now as well....NO TICS!! I have done EXTENSIVE research and probably spent most of my life on the phone the past few years gathering all I could from everyone. NO ONE else in the family has tics, much less ever heard of them. How can this be. Why did the tics ONLY show up in my daughter. Its sort of like it all made sense to me for a second but now I feel puzzled as can be again. The only thing I can think of is that the 9 shots that day brought out the pre-dispostion of tics for her. I will add that no one in my family or there children EVER had a mix of 9 vaccinations in one day either. I wonder also if I should have reported it or should report it to the CDC..maybe its too late? I just cannot come to any other conclusion. She was normal before the shots that day. I will never forget it. What does everyine think about it all.....it just does not make sense to me.

I am posting instead of a PM. Just because I am sure that everyone else is also wondering how your daughter is doing. I have been thinking of her. Is there a change....better or worse? Did you figure anything out? Let us know okay.

I forgot to mention that it was on these very boards that I learned that tylenol wipes out the sulfification system completely. (sure I spelled that wrong) Sometimes I can't stop from completely HATING myself for not knowing of all these things prior to even having a child. My doctor back home always told us to give tylenol before we even got to the office for shots! I thought I was prepared for Motherhood, thought I did my research, believed in Doctors like they were GOD. If only I could just go back to that one day of the 9 vaccinations. I would give anything to do that. Sometimes its hard thinking that I played a part in this whole thing. Especially when I look at her. I feel as though I have ruined her life in a funny kind of way. Well it seems I am ready for a good cry now...talk to you all later, have a nice night

EAMom/Kim.....This is OH so very interesting!!!!!!!!!!!!!! This is a little off fromt he vitamin D and Vaccinantions but .... Funny how this old woman that lives down the street told me a story about her Mom and Family who lived in another country. They grew their own tobacco and everything. Anyhow she reported that only 6 months after she came to the United States and was exposed to all CRAP here....she developed a tumor that killed her. She was 82 years old and healthy as a horse from what I was told. Our food, our everything!!!! I can't imagine what it would and will be like here in another 100 years if all this stuff continues. It is very sad, very sad indeed that we have to live in a pretty much toxic and poisonous world.....not to mention what some of our children are going through. If my husbands employer starts to get hit from this really bad economy right now.....I would love to leave this country...sorry but...it's true. And I am ONLY speaking for health benefits so that is VERY sad. I think Florida is a nasty dirty SWAMP. Its not fit for people much less animals any longer. Sorry I have to laugh....I had a moment, had to apparently vent. Just something else that really gets to me.

Kim I can't get anything on the link you provided...it asks for password. Anyhow I was trying to figure out what vitamin D you are referring to. Thanks

We take cholecalciferol (vitamin D3) not the D2 Here is some info on the cancer part (I have taken 1000mg daily for almost a year now. My daughter too but only 500. The best way is to get your levels checked, you may need really high doses to bring you up and than maintain with a different does. There is no way to tell unless you have the levels checked. You could take it everyday and it wouldn't matter if your levels are not correct. The first thing I noticed after I started taking it was the INCREASE in energy! WOW Vitamin D3 is one of the most useful nutritional tools we have at our disposal for improving overall health. This vitamin is unique because cholecalciferol (Vitamin D3) is a vitamin derived from 7-dehyrocholesterol; however, Vitamin D3 acquires hormone-like actions when cholecalciferol (Vitamin D3) is converted to 1,25-dihydroxy Vitamin D3 (Calcitriol) by the liver and kidneys. As a hormone, Calcitriol controls phosphorus, calcium, and bone metabolism and neuromuscular function. Vitamin D3 is the only vitamin the body can manufacture from sunlight (UVB). Yet, with today’s indoor living and the extensive use of sunscreens due to concern about skin cancer, we are now a society with millions of individuals deficient in life-sustaining bone building and immune modulating 1,25-dihydroxy Vitamin D3. For more than a century, scientists have recognized that Vitamin D3 is involved in bone health. Research has continued to accumulate, documenting Calcitriol’s role in the reduction of the risk of fractures to a significant degree. The latest research, however, shows that 1,25-dihyroxy Vitamin D3 deficiency is linked to a surprising number of other health conditions such as depression, back pain, cancer, both insulin resistance and pre-eclampsia during pregnancy, impaired immunity and macular degeneration. As it becomes clear that Vitamin D3 plays a wide role in overall health, it’s becoming equally clear that a large percentage of individuals are deficient in this important nutrient, which has hormone-like activity. The fear of skin cancer has stopped many individuals from obtaining beneficial amounts of sunlight. The skin uses the energy of UVB to convert 7-dehydrocholesterol into Vitamin D3. Even individuals, who venture out into the sun often and use suntan lotion, may be deficient in Vitamin D3. Furthermore, as we age, we are less equipped to produce sufficient quantities of this vital nutrient. One study found that age-related declines in kidney function may require older people to ingest more Vitamin D3 to maintain the same blood levels as younger people.1 The Recommended Daily Intake (RDI) of Vitamin D3 is set so low those mature individuals who consume this small amount (400 to 600 International Unites (I.U.’s)) are still likely to be deficient if they live north of the Tropic of Cancer or south of the Tropic of Capricorn. In fact, researchers have discovered that the RDI, which was considered adequate to prevent osteomalacia (a painful bone disease) or rickets, is not high enough to protect against the majority of diseases linked to 1,25-dihyroxy Vitamin D3 deficiency. For example, an analysis of the medical literature found that at least 1,000 to 2,000 IU of Vitamin D3 per day is necessary to reduce the risk of colorectal cancer and that lower doses of Vitamin D3 did not have the same protective effect.2 Researchers Call for Higher Doses In an editorial in the March 2007 edition of the American Journal of Clinical Nutrition, a prominent group of researchers from leading institutions such as the University of Toronto, Brigham and Women’s Hospital, Tufts University and University Hospital in Zurich, Switzerland, lashed out at the conventional media for its inaccurate reporting of Vitamin D supplementation.3 The researchers wrote, “Almost every time the public media report that Vitamin D nutrition status is too low, or that higher Vitamin D intakes may improve measures of health, the advice that accompanies the report is outdated and thus misleading. Media reports to the public are typically accompanied by a paragraph that approximates the following: ‘Current recommendations from the Institute of Medicine call for 200 IU/day from birth through age 50 years, 400 IU for those aged 51–70 years, and 600 IU for those aged >70 years. Some experts say that optimal amounts are closer to 1,000 IU daily. Until more is known, it is wise not to overdo it.’ The only conclusion that the public can draw from this is to do nothing different from what they have done in the past.” The researchers point out that supplemental intake of 400 IU per day barely raises blood concentrations of 25(OH)D, which is the circulating Vitamin D metabolite that serves as the most frequently measured indicator of Vitamin D status. To raise 25(OH)D from 50 to 80 nmol/L requires an additional intake of 1,700 IU Vitamin D per day. The researchers went on to write that, “The balance of the evidence leads to the conclusion that the public health is best served by a recommendation of higher daily intakes of Vitamin D. Relatively simple and low-cost changes, such as increased food fortification or increasing the amount of Vitamin D in Vitamin supplement products, may very well bring about rapid and important reductions in the morbidity associated with low Vitamin D status.” One of the challenges is the outdated acceptable upper limit for Vitamin D3 consumption, which was set at 2,000 IU. However, researchers point out that more recent studies have shown that 10,000 IU is the safe upper limit.4 Dr. R. Vieth, one of the foremost authorities on Vitamin D3 supplementation, has extensively studied Vitamin D, and lamented the low requirements for Vitamin D3 in a recent issue of the Journal of Nutrition: “Inappropriately low UL [upper limit] values, or guidance values, for Vitamin D have hindered objective clinical research on Vitamin D nutrition; they have hindered our understanding of its role in disease prevention, and restricted the amount of Vitamin D in multivitamins and foods to doses (that are) too low to benefit public health.”5 When examining the medical literature, it becomes clear that Vitamin D3 affects human health in an astonishing number of ways and that not obtaining enough of this important nutrient can leave the door open to developing a number of health conditions. Depression Vitamin D3 deficiency is common in older adults and has been implicated in psychiatric and neurologic disorders. For example, in one study of 80 older adults (40 with mild Alzheimer’s disease and 40 nondemented persons), Vitamin D3 deficiency was associated with low mood and with impairment on two of four measures of cognitive performance.6 Back Pain Musculoskeletal disorders have been linked to Vitamin D3 deficiency in a number of studies. One of the newest studies explored the role that low Vitamin D3 levels play in the development of chronic low back pain in women. Sixty female patients in Egypt complaining of low back pain lasting more than three months were studied. Researchers measured levels of Vitamin D3 in the women with low back pain and compared those levels to those of 20 matched healthy controls. The study revealed that patients with low back pain had significantly lower Vitamin D3 levels than controls. Low Vitamin D3 levels (25 OHD < 40 ng/ml) were found in 49/60 patients (81 percent) and 12/20 (60 percent) of controls.7 Bone Health One of the best known and long-established benefits of Vitamin D3 is its ability to improve bone health and the health of the musculoskeletal system. It is well documented that Vitamin D3 deficiency causes osteopenia, precipitates and exacerbates osteoporosis, causes a painful bone disease known as osteomalacia, and exacerbates muscle weakness, which increases the risk of falls and fractures. Vitamin D3 insufficiency may alter the regulatory mechanisms of parathyroid hormone (PTH) and cause a secondary hyperparathyroidism that increases the risk of osteoporosis and fractures.8 Cognitive Enhancement Scientists are developing a greater appreciation for Vitamin D3’s ability to improve cognition. In a recent study, Vitamin D3 deficient subjects scored worse on mental function tests compared to individuals who had higher levels of the Vitamin.9 The researchers wrote, “In conclusion, the positive, significant correlation between serum 25(OH)D concentration and MMSE [mental state examination scores] in these patients suggests a potential role for Vitamin D in cognitive function of older adults.” Cancer One researcher first noted the connection between Vitamin D3 and protection from cancer in the 1940s, when he discovered that individuals at sunny latitudes had a reduced rate of deaths from cancer. He suggested that sunlight provided “a relative cancer immunity.” Since then, a number of studies have strongly suggested that Vitamin D3 deficiency is associated with an increased risk of developing many forms of cancer including breast, ovarian, prostate and colon cancer.10 In one recent clinical trial, researchers studied 1,179 healthy, postmenopausal women (all 55 years or older and free of known cancers for at least 10 years prior to entering the study) who were taking large amounts of Vitamin D3 with calcium. The subjects were randomly assigned to take daily dosages of: (1) 1,400-1,500 mg supplemental calcium, (2) 1,400-1,500 mg supplemental calcium plus 1,100 IU of Vitamin D3, or (3) placebos. Over the four-year trial, women in the calcium/Vitamin D3 group experienced a 60 percent or greater reduced risk of cancer than their peers in the placebo group, who were not consuming these supplements. Because there was the chance that some women may have had undiagnosed cancers at the study’s start, the researchers threw out the first-year results and then analyzed the results from the last three years of the trial. These later years resulted in even more dramatic decrease, with the calcium/Vitamin D3 group experiencing a 77 percent reduction in cancer risk. There was no statistically significant difference in cancer incidence between the participants taking placebos and subjects consuming only calcium supplements.11 Another interesting study demonstrated that in vitro Vitamin D3 may cause tumor cells to be more sensitive to chemotherapy drugs, increasing the efficacy of the cancer treatment.12 Immunity Scientists have linked various aspects of immune health to a Vitamin D3 deficiency. Vitamin D3 regulates T cells, which are important to the functioning of a strong immune system. Vitamin D3 acts as an immune system modulator, preventing excessive expression of inflammatory cytokines and increasing the killing efficiency of macrophages. In addition, it dramatically stimulates the expression of potent anti-microbial peptides, which exist in immune system cells such as neutrophils, monocytes, natural killer cells, and in cells lining the respiratory tract. These Vitamin-D3-stimulated peptides play a major role in protecting the lung from infection.13 In addition, Vitamin D3 deficiency may influence development and progression of various autoimmune diseases.14 Multi-Talented Nutrient Vitamin D3 deficiency has been linked to a host of other conditions such as high blood pressure, fibromyalgia, diabetes, multiple sclerosis, rheumatoid arthritis, and an increased risk of pre-eclampsia and insulin resistance during pregnancy.11,15-16 Most recently, low Vitamin D3 levels have been linked to an increased prevalence of early age-related macular degeneration.17 Proper Dosage In many of my patients, even after consuming 2,000 to 4,000 IU of Vitamin D3 per day, their test results indicate that their Vitamin D3 levels have not increased. These patients needed to consume 8,000 IU of Vitamin D3 per day to achieve proper blood levels of the Vitamin. Patients should, therefore, have their physicians test their serum 1,25-dihyroxy D3 levels to determine the proper level of supplementation required. Testing is very important due to the fact that, in a small number of patients, Vitamin D3 supplementation can raise calcium levels to an excessively high level. I have found this to be especially true in African American patients. Testing for 1,25-dihyroxy Vitamin D3, PTH and calcium blood levels should therefore become a part of every woman’s regular blood work. Conclusion A growing number of researchers who have widely studied Vitamin D3 are almost begging the general public to consume more of this important nutrient. Due to Vitamin D3’s high safety profile in doses up to 10,000 IU per day and because of the wide role it plays in our health, consuming 2,000 to 4,000 IU per day of this nutrient at times of the year when sunlight is scarce is a prudent way to improve overall health. http://www.vrp.com/articles.aspx?ProdID=art2130&zTYPE=2 ilkins CH, Sheline YI, Roe CM, Birge SJ, Morris JC. Vitamin D deficiency is associated with low mood and worse cognitive performance in older adults. Am J Geriatr Psychiatry. 2006 Dec;14(12):1032-40. 7. Lotfi A, Abdel-Nasser AM, Hamdy A, Omran AA, El-Rehany MA. HypoVitaminosis D in female patients with chronic low back pain. Clin Rheumatol. 2007 Mar 22; [Epub ahead of print]. 8. Pérez-López FR. Vitamin D and its implications for musculoskeletal health in women: An update. Maturitas. 2007 Jun 28; [Epub ahead of print]. 9. Przybelski RJ, Binkley NC. Is Vitamin D important for preserving cognition? A positive correlation of serum 25-hydroxyVitamin D concentration with cognitive function. Arch Biochem Biophys. 2007 Apr 15;460(2):202-5. 10. Grant WB. An estimate of premature cancer mortality in the U.S. due to inadequate doses of solar ultraviolet-B radiation. Cancer. 2002 Mar 15;94(6):1867-75. 11. Lappe J, Travers-Gustafson D, Davies K, Recker R, Heaney R. Vitamin D and calcium supplementation reduces cancer risk: results of a randomized trial. American Journal of Clinical Nutrition. June 8;85(6):1586-1591. 12. Ma Y, et al. Study presented at the 2007 centennial meeting of the American Association for Cancer Research (AACR), April 14 to 18, 2007, Los Angeles. 13. Cannell JJ, Vieth R, Umhau JC, Holick MF, Grant WB, Madronich S, Garland CF, Giovannucci E. Epidemic influenza and Vitamin D. Epidemiol Infect. 2006 Dec;134(6):1129-40. 14. Kuryłowicz A, Bednarczuk T, Nauman J. [The influence of Vitamin D deficiency on cancers and autoimmune diseases development.] [Article in Polish] Endokrynol Pol. 2007;58(2):140-152. 15. Bodnar LM, Catov JM, Simhan HN, Holick MF, Powers RW, Roberts JM. Maternal Vitamin D deficiency increases the risk of preeclampsia. J Clin Endocrinol Metab. 2007 May 29; [Epub ahead of print]. 16. Maghbooli Z, Hossein-Nezhad A, Karimi F, Shafaei AR, Larijani B. Correlation between Vitamin D(3) deficiency and insulin resistance in pregnancy. Diabetes Metab Res Rev. 2007 Jul 2; [Epub ahead of print]. 17. Parekh N, Chappell RJ, Millen AE, Albert DM, Mares JA. Association Between Vitamin D and Age-Related Macular Degeneration in the Third National Health and Nutrition Examination Survey, 1988 Through 1994. Arch Ophthalmol. May 2007;125: 661-669.

Bonnie.....I am going to find out where your Mom lives and commit my first robbery!!!!!!!!!!!! The soil here is SO BAD I would not even eat anything I planted outside. Not to mention the 6 trillion buggy things that live in Florida! LOL Your Mom should sell them...ship them in dry ice!!!!!!!! I will buy! The organic fruit is getting my bill out of hand at the market (Publix) not sure how much longer I can continue. I always wonder as well if everything that states "organic" is really "organic"..... I can taste the difference in the banana's though...

Caryn....My daughter LOVES frozen blueberries! After I buy the fresh blueberries, I put a bowl of them int he freezer for her. Its the first thing she grabs as a snack when she gets home from school. I have deceided to skip the fruit cups because there are no strawberries in them or kiwi. After talking with my daughter and telling her this, she did confirm my suspiscion on the whole thing...she wants cherries. I think I will buy the fresh ones and take the pit out and cut them in half. We did though try one of the fruit cups today after breakfeast....she hated it. I think maybe she is just used to the fresh fruit taste. I tried one as well and YUCK. I am sorry but I thought they were gross. Guess I am chucking the rest in the garbage. What a waste of money. I really did not think she would like them, but at least now she found out on her own. My husbands sisters sons love them though.

Hello Faith, Yes she is still on the topamax. We do though still only eat mostly organic/Natural foods aside from birthday parties and such. She makes really good decisions on her own so its been easy to stay away from the junk. After her condition came along and all the research began, I really learned alot as well about the foods these days and what is exactly in them. YUCK! We all had pretty much good eating habits but after some things I read over the past year, there are some things that I used to eat and will just never eat them again now. I think I will skip the fruit cups....I was hoping they were maybe more natural. I notice these days how a lot of items are beginning to include things like.. "all natural"..."no preservatives"..."no artificial ingredients" on their labels. Then when I read the label I realize that someone just hired a really good campaign manager and found a way to put that on the label due to some loop hole or something. I guess finding a way to "LIE" and be sneaky pays a good pretty penny. OH....its that cherry you mentitoned that has her intriged. Maybe I will just add some cherries to her usual fruit mix. Thanks for the reply!

From everyone's experience what would be the biggest offender (ingredient) relating to tics in one of those fruit cups? You know the tropical mix offered in the juice or the syrup. My daughter has fresh fruit everyday but started to ask about these. I am thinking she probbaly saw someone at school with them.

It seems that all is leaning towards Pandas being an autoimmune....does everyone agree with this? So TS/Tics are not considered to be autoimmune but possibly a inherited gene??? I would love all your comments. I guess I am wondering if IVIG would also treat tics/ or TS???

Forgot to add that my daughter also takes it but only 500 a day.

Hello EAMOM, A friend of mine has a friend whose husband was diagnosed with cancer. His cancer Doctor pulled her aside one day and told her to take 1000 milligrams of D3 (not just D) everyday. He said to trust him and that his whole family takes it. That was over a year ago and I have been taking it everyday since then. Just thought I would pass on.....

Hello, Never heard of them but after a few googles I found this: http://msgboard.snopes.com/message/ultimat...6/t/001534.html Not sure how much faith to put in to it or how much not to?????? But check it out

Caryn, Just curious as to what might be your thoughts (comments) on this: (if of course you have any) Child's lymphatic system appears to be quite active, particularly in her digestive area. It seems that carbohydrate foods that she is eating are being redirected from the digestive system, which means she is either not digesting them, and the immune system is interpreting them as toxins, that it, in turn, is directing the lymphatic system to rid of, or there is an organism of some kind living in her body needing carbohydrates as a food source to continue its existence. There is an embedded virus in her upper respiratory tract, and that is where I suspect the carbohydrates are going---to feed this virus. Thanks

Any comments on this: Can your brain actually have yeast????? http://www.danasview.net/yeast.htm

You know Cheri I always have wondered why it is (of course) recommended that women be in tip top health and stay away from most meds and certain things while pregnant, but not many things mention of what men should do (when trying to plant that little seed) In other words I wonder what effects certain drugs that men take (and certain lifestlyes they have) have on the sperm at the time of conception.... Even though I am sure its been said...I just have never really read anything about how men should prepare...not like the women anyhow. I do realize its probably more critical on the womans half but I bet alot of things unknown play a part from the mens side. Thanks for the post....I have always been TOO scared of the SSRI's anyhow. I took one briefly years ago after making an out of state move from my family (very depressed) and even after I stopped taking that dam paxil I had funny feelings (hard to explain) for a LONG time afterwards. NEVER AGAIN! The wean off from that alone was nothing I would want to re-live!

Pat....my brother just called me...(his wife works within the medical community) I always exchange info on my daughter with him and his wife is good at getting me some answers that make sense when I have none. I ran the bath thing by him (how it bothered my daughter and it seemed to also have an effect on yours) He said that his wife talked with someone today and their response was that a hot bath or sometimes even a shower can lower your blood pressure. I found that VERY interesting when I noticed how Buster mentioned the BP thing to you. Can anyone add to this???? I will have to look around...my brothers message was very short and he didn't offer anything to back it all up with. This would in my case anyhow clearly explain the effects of the baths on my daughter. The last one I thought she was going to pass out! I am staying away from the baths for now.... Hope it turns to help a little Pat...

My daughter was on clonidine in the beginning as well. She seemed okay but then complained of always being tired. Shortly after starting she would have BAD nightmares that woke her every night. I called the neuro about this and was told it was a rare side effect but indeed a side effect. We went in immediaitely for a check up and then found out how low her blood pressure was! Even on that very low dose. She was then taken off and thats when they offered the tenex.....I thought they were actually CRAZY!!!!!!!!!!!! The blood pressure thing was just too scary for me. Also it was HORRIBLE to try and get some blood out of this girl when we were trying to check the titers. The nurses attributed this to the blood moving so slow???? Made sense to me, took forever to fill just 1/2 vial and she was also screaming through the whole thing. Isn't the med for someone with HIGH blood pressure....this would slow it down to normal I am assuming, so when its taken by someone with normal blood flow then you must end up with low pressure? Do people with low blood pressure also take meds to speed it up???? I don't understand (as usual) Maybe I am just not awake yet, but to me lowering normal blood pressure can not be a good thing can it???

My daughter takes her blanket off at night too. I am not even sure she is awake when she does it. I have to wait until she falls asleep to even put it on her. Interesting.... After a chat with the doctor on Friday she told me to stop the baths (hot ones) Method makes an all natural bubble bath so we will just stick to those in a luke warm bath so she can at least enjoy one (she loves them) with bubbles anyway. Hope you get answers soon. The info on the ivig you just gave me was completely different from what I have been reading. I will try and find it.....

Just wondering Pat if you are finished with the IVIG? I do not know much about it but what I have read makes me understand that more than one treatment may be needed in some? Also I am hoping WORRIEDDAD updates on his son. If I a correct you two did the IVIG the same time. I sure hope things are better soon Pat. I stopped the hot baths for my daughter. She kept complaining of feeling funny and she really did not look well either.