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I have an immunization issue with our Dr's office. I was wondering what others here would do?

 

When my daughter was born a year ago after my son had years of neuro issues from 13 months, I asked the Dr. on call at the hospital to hold off on the Hep B shot. Well, Last month I brought in her immunization card to be filled in by her ped. Here I found out that she wrote in the day after she was born as getting the Hep B shot. I can specifically remember the conversation at the hospital with the Dr. from our office and me saying no and her trying to reassure me there was no correlation between shots and neuro issues my son has. I said I'd rather wait. Then at her one month visit I said go ahead with the Hep B shot. Now I find out that it was given at the hospital.

 

I know Kim knows alot about immunization issues. I now have found out my baby has languange apraxia/dyspraxia. Is there any connection on shots and this disorder. Her feet are also toeing in which could be a muscle issue. We have determined it is not a bone issue. I feel like here we go again. I have to deal with my sons issues hyptonia/dyspraxia plus possible TS plus therapy for his OT issues. Now I am going to have to start worrying with her also about neuro/motor issues. She is twenty months and only saying one or two words. I did a language eval at the hospital and start speech therapy tomorrow. We are already doing PT for her feet. Could there be a connection between shots and these issues?

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I asked the Dr. on call at the hospital to hold off on the Hep B shot. Well, Last month I brought in her immunization card to be filled in by her ped. Here I found out that she wrote in the day after she was born as getting the Hep B shot.

.

Michelle, that is reported frequently. Parents request NO HEP B and it's done anyway. Other parents who have been through this, recommend not letting the baby outta your site in the hospital. Dad or other family member should go with the baby anytime it's away from Mom. That didn't seem very practical to me (never know how long mom or baby might remain in hospital). It was really odd when my niece had her daughter 2 1/2 years ago, I called the hospital and asked what the procedure was for making sure that there was documentation in place so that her baby would not receive the HEP B birth dose. They said that the hospital had nothing to do with it, it was the Peds call. I called her OB doc's office. They said since there was really no patient yet (baby hadn't been born) they could not sign anything. Soooo, when niece went into labor she hand wrote "Baby NOT TO RECIEVE HEP B" on everything that she signed. I reminded them at the nurses station, and talked to the attending Doc. We (several family memebers) went with the baby to the newborn nursery as she was cleaned up, weighed, etc. I reminded them in the nursery again and watched like a hawk ^_^ . I SO strongly believe (when mom is HEB B negative) that the HEP B birth dose is nothing short of criminal.

 

I can specifically remember the conversation at the hospital with the Dr. from our office and me saying no and her trying to reassure me there was no correlation between shots and neuro issues my son has.

 

 

In order to back up a statement like that, they would have to know exactly what was causing your son's neuro issues and then conduct a long term study of immunized against unimmunized children and look at the difference in outcome. That is a lame statement that has been used to reassure ignorant parents for TOO long. Next time you get that line, ask them how many hours of education that they have on the principle's of vaccination. Ask them if the vaccine contains and adjuvant. Ask them what their view is in regards to aluminum being present in nodules found at the injection site of some immunized children months after injection, when it was always generally accepted that it cleared the body quickly. Ask if they are aware of the published study that Chris Shaw did, showing neuronal death in relationship to vaccines, or if they are aware that the former head of the NIH, Dr. Bernadine Healy, is now saying that she thinks vaccines warrant further investigation in relationship to neuro issues. Ask what they know about serotype replacement and what their long term views on it are.

 

http://www.injuryboard.com/national-news/n...googleid=239032

 

That stunning admission from the former director of the National Institutes of Health, Dr. Bernadine Healy, as the federal vaccine court listens to two more cases linking autism and vaccines.

 

Public Health Too Quick To Dismiss Autism Parents, NIH Director Says

Posted by Jane Akre

May 13, 2008 12:31 PM

In a shocking break with the medical community, Dr. Bernadine Healy, former head of the NIH, says the medical community has been too quick to dismiss parents concerns of an autism-vaccine link. It deserves study she says and was concerned by a 2004 report that said look no further. Some children should be included in a sub-set that never get vaccines or receive them on an alternate schedule, she believes.

 

 

If it's a thimerosal flu vaccine or TD booster that still contains mercury, ask if they are aware that the current head of the CDC, Julie Gerberding is now saying that a major study showing no relationship to thimerosal and autism spectrum disorders are flawed.

 

http://www.huffingtonpost.com/david-kirby/...udy-design_b_...

 

CDC Director Dr. Julie Gerberding has delivered a potentially explosive

report to the powerful House Appropriations Committee, in which she admits

to a startling string of errors in the design and methods used in the CDC's

landmark 2003 study that found no link between mercury in vaccines and

autism, ADHD, speech delay or tics.

 

 

I would love to see parents start asking these Dr.s just what the incidence of tetnus was in the US prior to widespread use of the vaccine (one of the vax inserts says something like 567 cases. The rare cases are found mostly in OLDER people with impaired circulation (in the US) where umbilical cords are NOT PACKED with dung containing soil. I would luv to see them ask how Hep B is trasmitted in the VAST majority of cases (sex and injected drug use) and remind them that your child is not expected to attend a preschool in an area with high rates of herion use and prostitution (some of these area's have a high rate of HEP B infection and there is light evidence that RARELY it can be transmitted more casually).

 

Ask them if your child is safe from pertussis infection after the first vaccine is given at 2 mos. or if the level of antibody that is thought to be protective is only achieved after the full series. If the answer is the later, ask what age bracket pertussis is most dangerous in. Take notes, and then take them YOUR research. I can almost guarantee you that they will not score a A on this type of questioning unless they are a whole lot more informed than the Dr.s that I have spoken with!

 

Whoa, I better stop now. I'll be deleting this post if I don't.

 

Michelle, you follow your instincts and do your homework. Don't be intimidated into something that you are going to wonder about. Again, depending on the family history, there may be a vax or vax's that you feel would be beneficial. Parent's weren't supposed to be in this situation, but unfortunetly we are.

 

When there are all of these questions surrounding vaccines/genetics, I think you can only weigh them one at a time and say your prayers!

 

some interesting reading

 

 

http://www.whale.to/a/tet2.html

 

It was a beautiful fall day, the Friday after Thanksgiving 2000, and the

holiday was very enjoyable. A few months earlier, I moved to a small town

in California to be closer to my family. I started a new job and purchased

a small cabin. Most of my weekends were spent camping, hiking, working on

my house, or volunteering at the local animal shelter. At age 54, I was

very active and healthy. My hobbies included singing, dancing, and cooking.

 

http://www.relfe.com/vaccine.html

 

When my son began his routine vaccination series at age 2 months, I did not know there were any risks associated with immunizations. But the clinic's literature contained a contradiction: the chances of a serious adverse reaction to the DPT vaccine were 1 in 1750, while his chances of dying from pertussis each year were 1 in several million. When I pointed this out to the physician, he angrily disagreed, and stormed out of the room mumbling, "I guess I should read that sometime

 

 

 

http://www.pittsburghlive.com/x/pittsburgh...h/s_536338.html

 

Elena Neil's oldest daughter already showed symptoms of autism by the time Neil learned that Pennsylvania allowed parents to claim a religious exemption from mandatory vaccinations of their children.

 

http://educate-yourself.org/vcd/vaccinatio...ll22nov02.shtml

 

 

 

http://www.telluridenews.com/lifestyle/x17...3/Health-Column

 

In a letter to the editor in the quarterly journal Wise Traditions, put out by the Weston A. Price Foundation, a mother tells of her very healthy 13-year-old son being taken in for mandatory vaccines for his participation in a Boy Scout program. After his vaccination he became very sick, feverish, shaking uncontrollably, his back arching in pain — an often-reported response by parents to a child’s vaccination. The parents took him to the emergency room, letting the ER doctors know several times that this response came on after a vaccination. The ER made light of it, saying he must have ‘picked up a bug’ while at the doctor’s office. The ER release papers never mentioned the correlation so it was never reported. The parents’ testimony is that their son’s health has not been the same since the incident.

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I have an immunization issue with our Dr's office. I was wondering what others here would do?

 

When my daughter was born a year ago after my son had years of neuro issues from 13 months, I asked the Dr. on call at the hospital to hold off on the Hep B shot. Well, Last month I brought in her immunization card to be filled in by her ped. Here I found out that she wrote in the day after she was born as getting the Hep B shot. I can specifically remember the conversation at the hospital with the Dr. from our office and me saying no and her trying to reassure me there was no correlation between shots and neuro issues my son has. I said I'd rather wait. Then at her one month visit I said go ahead with the Hep B shot. Now I find out that it was given at the hospital.

 

I know Kim knows alot about immunization issues. I now have found out my baby has languange apraxia/dyspraxia. Is there any connection on shots and this disorder. Her feet are also toeing in which could be a muscle issue. We have determined it is not a bone issue. I feel like here we go again. I have to deal with my sons issues hyptonia/dyspraxia plus possible TS plus therapy for his OT issues. Now I am going to have to start worrying with her also about neuro/motor issues. She is twenty months and only saying one or two words. I did a language eval at the hospital and start speech therapy tomorrow. We are already doing PT for her feet. Could there be a connection between shots and these issues?

 

I have been on this website mainly for the PANDAS issue with one of my twins, but when I saw your post, I had to respond to this. My twins (who are 8 now) had developed fairly normally as infants, but at the age of 20 months it was apparent that their speech and language was delayed. They still receive speech therapy and it still is not what it should be. I've always thought that the vaccinations had something to do with it. Now, one of the twins (the one who is affected the most speech-wise) had developed PANDAS last year. I'm not sure if there's any correlation - having to do with the immune system. She is doing fairly well after receiving IVIG a couple of weeks ago, but as far the vaccinations go, I am becoming more skeptical all the time. My sister just called me a couple of hours ago to say that her 16 year old daughter who had received a chicken pox booster shot yesterday has a huge swollen arm - hard as a rock, red, hot to the touch and burns and itches. I told her to get her to the ER. What's going on with all these vaccines - it seems like nothing good ever comes from them - we used to be just fine without all these new additions.

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Thanks for bringing up this topic and Kim's excellent information for us all!

My son had a normal delivery but when he was 2 we realized he was delayed and doing everything at the end of the curve. His speech was very affected and he started signing and making up his own language!(He prefers to sign rather than try to speak to this day) He had an MRI at 3 and it showed scarring in his brain. This drove me crazy...where did this come from? I had a normal healthy pregnancy! No Dr could give me a good explanation..until I started seeing Dr Mielke the DAN Dr....she said it's vaccine injury...He had 5 vaccines in one day when he was 5 months old. I really think this is why he is delayed. I also believe over anti-biotic use as infants has contributed to an increase in PANDAS in our now older kids..

As for vaccines I recently took my 14 yr old very healthy daughter in and they were trying to talk me into same vaccines...chix-pox booster and cervical cancer vaccine..NO WAY!

Sarah

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Kim,

 

Just curious about this post. Are you saying that the Hep B shot causes some of the pandas? I find this very interesting, as my sone developed his vocal tics after receiving Hep A and a Varicella shot in June of 2007. Also, I would like to know what anyone else here on this forum is doing with "Flue Shots". I spoke with our dr. and she thinks my son should get the shot, but I'm very skeptical about this. I spoke with a pharmacist who told me that the vaccines still have the preservative "thermerasol". Any thoughts on this?

Linda

 

I asked the Dr. on call at the hospital to hold off on the Hep B shot. Well, Last month I brought in her immunization card to be filled in by her ped. Here I found out that she wrote in the day after she was born as getting the Hep B shot.

.

Michelle, that is reported frequently. Parents request NO HEP B and it's done anyway. Other parents who have been through this, recommend not letting the baby outta your site in the hospital. Dad or other family member should go with the baby anytime it's away from Mom. That didn't seem very practical to me (never know how long mom or baby might remain in hospital). It was really odd when my niece had her daughter 2 1/2 years ago, I called the hospital and asked what the procedure was for making sure that there was documentation in place so that her baby would not receive the HEP B birth dose. They said that the hospital had nothing to do with it, it was the Peds call. I called her OB doc's office. They said since there was really no patient yet (baby hadn't been born) they could not sign anything. Soooo, when niece went into labor she hand wrote "Baby NOT TO RECIEVE HEP B" on everything that she signed. I reminded them at the nurses station, and talked to the attending Doc. We (several family memebers) went with the baby to the newborn nursery as she was cleaned up, weighed, etc. I reminded them in the nursery again and watched like a hawk ^_^ . I SO strongly believe (when mom is HEB B negative) that the HEP B birth dose is nothing short of criminal.

 

I can specifically remember the conversation at the hospital with the Dr. from our office and me saying no and her trying to reassure me there was no correlation between shots and neuro issues my son has.
In order to back up a statement like that, they would have to know exactly what was causing your son's neuro issues and then conduct a long term study of immunized against unimmunized children and look at the difference in outcome. That is a lame statement that has been used to reassure ignorant parents for TOO long. Next time you get that line, ask them how many hours of education that they have on the principle's of vaccination. Ask them if the vaccine contains and adjuvant. Ask them what their view is in regards to aluminum being present in nodules found at the injection site of some immunized children months after injection, when it was always generally accepted that it cleared the body quickly. Ask if they are aware of the published study that Chris Shaw did, showing neuronal death in relationship to vaccines, or if they are aware that the former head of the NIH, Dr. Bernadine Healy, is now saying that she thinks vaccines warrant further investigation in relationship to neuro issues. Ask what they know about serotype replacement and what there long term views on it are.

 

http://www.injuryboard.com/national-news/n...googleid=239032

 

That stunning admission from the former director of the National Institutes of Health, Dr. Bernadine Healy, as the federal vaccine court listens to two more cases linking autism and vaccines.

 

Public Health Too Quick To Dismiss Autism Parents, NIH Director Says

Posted by Jane Akre

May 13, 2008 12:31 PM

In a shocking break with the medical community, Dr. Bernadine Healy, former head of the NIH, says the medical community has been too quick to dismiss parents concerns of an autism-vaccine link. It deserves study she says and was concerned by a 2004 report that said look no further. Some children should be included in a sub-set that never get vaccines or receive them on an alternate schedule, she believes.

 

 

If it's a thimerosal flu vaccine or TD booster that still contains mercury, ask if they are aware that the current head of the CDC, Julie Gerberding is now saying that a major study showing no relationship to thimerosal and autism spectrum disorders are flawed.

 

http://www.huffingtonpost.com/david-kirby/...udy-design_b_...

 

CDC Director Dr. Julie Gerberding has delivered a potentially explosive

report to the powerful House Appropriations Committee, in which she admits

to a startling string of errors in the design and methods used in the CDC's

landmark 2003 study that found no link between mercury in vaccines and

autism, ADHD, speech delay or tics.

 

 

I would love to see parents start asking these Dr.s just what the incidence of tetnus was in the US prior to widespread use of the vaccine (one of the vax inserts says something like 567 cases. The rare cases are found mostly in OLDER people with impaired circulation (in the US) where umbilical cords are NOT PACKED with dung containing soil. I would luv to see them ask how Hep B is trasmitted in the VAST majority of cases (sex and injected drug use) and remind them that your child is not expected to attend a preschool in an area with high rates of herion use and prostitution (some of these area's have a high rate of HEP B infection and there is light evidence that RARELY it can be transmitted more casually).

 

Ask them if your child is safe from pertussis infection after the first vaccine is given at 2 mos. or if the level of antibody that is thought to be protective is only achieved after the full series. If the answer is the later, ask what age bracket pertussis is most dangerous in. Take notes, and then take them YOUR research. I can almost guarantee you that they will not score a A on this type of questioning unless they are a whole lot more informed than the Dr.s that I have spoken with!

 

Whoa, I better stop now. I'll be deleting this post if I don't.

 

Michelle, you follow your instincts and do your homework. Don't be intimidated into something that you are going to wonder about. Again, depending on the family history, there may be a vax or vax's that you feel would be beneficial. Parent's weren't supposed to be in this situation, but unfortunetly we are.

 

When there are all of these questions surrounding vaccines/genetics, I think you can only weigh them one at a time and say your prayers!

 

some interesting reading

 

 

http://www.whale.to/a/tet2.html

 

It was a beautiful fall day, the Friday after Thanksgiving 2000, and the

holiday was very enjoyable. A few months earlier, I moved to a small town

in California to be closer to my family. I started a new job and purchased

a small cabin. Most of my weekends were spent camping, hiking, working on

my house, or volunteering at the local animal shelter. At age 54, I was

very active and healthy. My hobbies included singing, dancing, and cooking.

 

http://www.relfe.com/vaccine.html

 

When my son began his routine vaccination series at age 2 months, I did not know there were any risks associated with immunizations. But the clinic's literature contained a contradiction: the chances of a serious adverse reaction to the DPT vaccine were 1 in 1750, while his chances of dying from pertussis each year were 1 in several million. When I pointed this out to the physician, he angrily disagreed, and stormed out of the room mumbling, "I guess I should read that sometime

 

 

 

http://www.pittsburghlive.com/x/pittsburgh...h/s_536338.html

 

Elena Neil's oldest daughter already showed symptoms of autism by the time Neil learned that Pennsylvania allowed parents to claim a religious exemption from mandatory vaccinations of their children.

 

http://educate-yourself.org/vcd/vaccinatio...ll22nov02.shtml

 

 

 

http://www.telluridenews.com/lifestyle/x17...3/Health-Column

 

In a letter to the editor in the quarterly journal Wise Traditions, put out by the Weston A. Price Foundation, a mother tells of her very healthy 13-year-old son being taken in for mandatory vaccines for his participation in a Boy Scout program. After his vaccination he became very sick, feverish, shaking uncontrollably, his back arching in pain — an often-reported response by parents to a child’s vaccination. The parents took him to the emergency room, letting the ER doctors know several times that this response came on after a vaccination. The ER made light of it, saying he must have ‘picked up a bug’ while at the doctor’s office. The ER release papers never mentioned the correlation so it was never reported. The parents’ testimony is that their son’s health has not been the same since the incident.

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I am just sick reading this all this over. Thanks to you all for your information especially Kim for your detailed response. Sarah, I can't believe the brain scarring showed on the MRI at age 3. Did a neuro do the MRI? I just had a bad feeling from day 1, no before she was born, that she could have similar problems to my son even though my first two kids were fine. I did look back on her record and on one day she did receive three shots, plus a liquid. Her ped knew I wanted to take things slow and was trying to prevent immune issues from happening again. Yet she kept pushing me for shots at each well visit. I know at that one visit I must of okayed those shots from her persuasion. Now I just look back and say everything was developing perfectly fine until she got high fevers last winter for a week and had tonsillitis. Now I am noticing how behind she is in speech. Her walking, climbing and jumping has not been affected (except for her feet turning in)nor her receptive language. However she can't get the words out. Everything is a mum sound or her own language. Have ther parents here had speech delays or apraxia /dyspraxia with their PANDAS kids? So far no tics. All I can do now is pray. Why do other parents just give them the shots and have no reaction but our kids can't handle them?

 

 

Thanks for bringing up this topic and Kim's excellent information for us all!

My son had a normal delivery but when he was 2 we realized he was delayed and doing everything at the end of the curve. His speech was very affected and he started signing and making up his own language!(He prefers to sign rather than try to speak to this day) He had an MRI at 3 and it showed scarring in his brain. This drove me crazy...where did this come from? I had a normal healthy pregnancy! No Dr could give me a good explanation..until I started seeing Dr Mielke the DAN Dr....she said it's vaccine injury...He had 5 vaccines in one day when he was 5 months old. I really think this is why he is delayed. I also believe over anti-biotic use as infants has contributed to an increase in PANDAS in our now older kids..

As for vaccines I recently took my 14 yr old very healthy daughter in and they were trying to talk me into same vaccines...chix-pox booster and cervical cancer vaccine..NO WAY!

Sarah

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Iss,

 

I guess what I'm really trying to point out is that since we don't really know what's going on with the immune system in children with Tourette's or PANDAS, there had better be a very good reason to inject them with these vaccines and in many cases, PERSONALLY, the evidence that I see is not as compelling for many many of the vaccines as what my uneducated thoughts were. With the plans for many more in the pipelines, I feel it's urgent that parents become at least a little educated in this area. Many Dr.s don't seem to have any critical thinking skills what so ever where vaccines/neuro problems are concerned. We have children with evidence of neurological and in many cases digestive problems to begin with. I feel there is ample reason to suspect that the immune system is involved in a subset, at the very least. The idea of vaccinating on schedule in children (or adults for that matter) with family history of MANY disorders, not just PANDAS/TS does NOT MAKE SENSE to me. Just good old common sense. I doubt that the Dr. the Michelle spoke with has ever read a study like this in his/her life. Can anyone justify injecting a child with 3, 5, 9 etc antigens along with the wholly unnatural immune stimulants and other junk into a child with evidence of a movement disorder? INSANE, but I do want to add that we can't be sure how kids that may be genetically predisposed might react to the natural illness either (or the medications/treatments).

 

All of these studies involve a researcher who has a child affected by TS. Interesting that he is looking at something other than dopamine

 

 

 

BOLDING MINE

 

http://www.ncbi.nlm.nih.gov/pubmed/1848536...Pubmed_RVDocSum

 

Age-related gene expression in Tourette syndrome.Lit L, Enstrom A, Sharp FR, Gilbert DL.

M.I.N.D. Institute, Department of Neurology, University of California at Davis, 2805, 50th Street, Room 2420, Sacramento, CA 95817, United States.

 

Because infection and immune responses have been implicated in the pathogenesis of Tourette syndrome (TS), we hypothesized that children with TS would have altered gene expression in blood compared to controls. In addition, because TS symptoms in childhood vary with age, we tested whether gene expression changes that occur with age in TS differ from normal control children. Whole blood was obtained from 30 children and adolescents with TS and 28 healthy children and adolescents matched for age, race, and gender. Gene expression (RNA) was assessed using whole genome Affymetrix microarrays. Age was analyzed as a continuous covariate and also stratified into three groups: 5-9 (common age for tic onset), 10-12 (when tics often peak), and 13-16 (tics may begin to wane). No global differences were found between TS and controls. However, expression of many genes and multiple pathways differed between TS and controls within each age group (5-9, 10-12, and 13-16), including genes involved in the immune-synapse, and proteasome- and ubiquitin-mediated proteolysis pathways. Notably, across age strata, expression of interferon response, viral processing, natural killer and cytotoxic T-lymphocyte cell genes differed. Our findings suggest age-related interferon, immune and protein degradation gene expression differences between TS and controls.

 

http://www.ncbi.nlm.nih.gov/pubmed/1750347...Pubmed_RVDocSum

 

Lit L, Gilbert DL, Walker W, Sharp FR.

Genetics Graduate Group, Department of Neurology, M.I.N.D. Institute, University of California at Davis, Sacramento, CA 95817, USA. Llit@ucdavis.edu

 

Gilles de la Tourette Syndrome (TS) is a heritable, neurodevelopmental disorder characterized by motor and vocal tics. As no single gene or region has emerged from standard linkage approaches, TS may result from several as-yet-unidentified genetic factors, and may also occur due to infection-triggered, autoimmune processes. Etiological or pathogenic differences might result in clinically indistinguishable TS subgroups. We have previously used whole genome human oligonucleotide microarrays in an attempt to identify patterns of gene expression in blood linked with TS. In this proof-of-principle study, we applied Principal Components Analysis to a previously collected set of 16 familial TS and 16 control blood samples to identify subgroups. Fourteen genes, primarily Natural Killer Cell (NK) genes, discriminated between TS and all controls. Granzyme B and NKG7 were confirmed using RT-PCR. Five probesets (four genes) reside in chromosomal regions previously linked to familial TS or obsessive-compulsive disorder. Using the 14 genes, a Principal Components Analysis as well as a cluster analysis identified a TS subgroup (n = 10/16) that overexpressed the NK genes. 7/10 subjects within this subgroup were diagnosed with attention-deficit hyperactivity disorder (ADHD), suggesting that this expression profile might be associated with TS and co-morbid ADHD. Principal Components Analysis of gene expression in blood may be useful for identifying subgroups of other complex neurodevelopmental diseases, and the gene expression profile identified in this study may provide a biomarker for at least one subgroup of heritable TS. © 2007 Wiley-Liss, Inc.

http://www.ncbi.nlm.nih.gov/pubmed/1710182...Pubmed_RVDocSum

 

 

The future of genomic profiling of neurological diseases using blood.Sharp FR, Xu H, Lit L, Walker W, Apperson M, Gilbert DL, Glauser TA, Wong B, Hershey A, Liu DZ, Pinter J, Zhan X, Liu X, Ran R.

Department of Neurology and Medical Investigation of Neurodevelopmental Disorders Institute, University of California-Davis Medical Center, Sacramento, CA 95817, USA. frank.sharp@ucdmc.ucadavis.edu

 

Sequencing of the human genome and new microarray technology make it possible to assess all genes on a single chip or array. Recent studies show different patterns of gene expression related to different tissues and diseases, and these patterns of gene expression are beginning to be used for diagnosis and treatment decisions in various types of lymphoid and solid malignancies. Because of obvious problems obtaining brain tissue, progress in genomics of neurological diseases has been slow. To address this, we demonstrated that different types of acute injury in rodent brain produced different patterns of gene expression in peripheral blood. These animal studies have now been extended to human studies. Two groups have shown that there are specific genomic profiles in the blood of patients after ischemic stroke that are highly sensitive and specific for predicting stroke. Other recent studies demonstrate specific genomic profiles in the blood of patients with Down syndrome, neurofibromatosis, tuberous sclerosis, Huntington disease, multiple sclerosis, Tourette syndrome, and others. In addition, data demonstrate specific profiles of gene expression in the blood related to different drugs, toxins, and infections. Although all of these studies are still preliminary basic scientific endeavors, they suggest that this approach will have clinical applications to neurological diseases in humans.

 

 

 

http://www.ncbi.nlm.nih.gov/pubmed/1571084...Pubmed_RVDocSum

 

Blood gene expression profiling of neurologic diseases: a pilot microarray study.Tang Y, Gilbert DL, Glauser TA, Hershey AD, Sharp FR.

Department of Neurology and Neuroscience Program, University of Cincinnati, OH, USA.

 

BACKGROUND: Tissue gene expression profiling with arrays measures the transcription of thousands of genes. However, this approach cannot be readily used to guide clinical neurologic practice. OBJECTIVES: To determine whether clinical neurologic diseases are associated with unique patterns of up- and down-regulated genes in whole blood and to explore the possibility of using peripheral blood as a surrogate tissue in these diseases. DESIGN: Case-control study. SETTING: University-based pediatric and adult neurology clinics. PARTICIPANTS: Patients with neurofibromatosis type 1, epilepsy, or Tourette syndrome diagnosed using traditional clinical criteria; controls without disease; and controls with neurologic disease. MAIN OUTCOME MEASURE: Blood gene expression levels of greater than 12,000 genes, measured using U95A arrays. RESULTS: Neurofibromatosis type 1 and childhood epilepsy treated with carbamazepine or valproic acid are associated with distinct patterns of blood gene expression. Patients with valproic acid-responsive vs valproic acid-refractory epilepsy formed distinct subclusters. Tourette syndrome was characterized by several gene expression clusters. In 1 cluster, 6 genes-all associated with immune cell function-were overexpressed. CONCLUSION: Blood gene expression profiling can provide surrogate markers for neurologic diseases without obvious blood phenotypes.

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Kim, A couple questions for you. Do you suggest genetic testing? Have you done this for your boys? Would there be a way to see if they have a genetic predisposition for movement disorders? Also one of the research articles you posted was written by D. Gilbert who is head of ped neurology at Cincinnati. He has also done research on PANDAS. Would you suggest I make a trip to see him since we are in Ohio. I hear from everyone our ped neurologist Dr. Erenberg at Cleveland Clinic is one of the leading tic Dr's in the US. However he does not believe in PANDAS he just calls it TS with possible immune relationship. I just wondered from a research perspective if you thought Gilbert would be worth a shot. Now I am wondering and worrying nonstop the baby may be presenting with neurological problems since the her speech is delayed, her senses seem heightened, and her feet toe in. It could be motor issues but I wonder how it relates to my son's neurological issues(he has motor issues too). I just wish I had never got her vaccinated at all. Is there a test to see if they carry the same gene? I am so stressed right now. She has therapy twice a week so does my son. It is very overwhelming and scary.

 

Thanks for letting me pick your brain!

Iss,

 

I guess what I'm really trying to point out is that since we don't really know what's going on with the immune system in children with Tourette's or PANDAS, there had better be a very good reason to inject them with these vaccines and in many cases, PERSONALLY, the evidence that I see is not as compelling for many many of the vaccines as what my uneducated thoughts were. With the plans for many more in the pipelines, I feel it's urgent that parents become at least a little educated in this area. Many Dr.s don't seem to have any critical thinking skills what so ever where vaccines/neuro problems are concerned. We have children with evidence of neurological and in many cases digestive problems to begin with. I feel there is ample reason to suspect that the immune system is involved in a subset, at the very least. The idea of vaccinating on schedule in children (or adults for that matter) with family history of MANY disorders, not just PANDAS/TS does NOT MAKE SENSE to me. Just good old common sense. I doubt that the Dr. the Michelle spoke with has ever read a study like this in his/her life. Can anyone justify injecting a child with 3, 5, 9 etc antigens along with the wholly unnatural immune stimulants and other junk into a child with evidence of a movement disorder? INSANE, but I do want to add that we can't be sure how kids that may be genetically predisposed might react to the natural illness either (or the medications/treatments).

 

All of these studies involve a researcher who has a child affected by TS. Interesting that he is looking at something other than dopamine

 

 

 

BOLDING MINE

 

http://www.ncbi.nlm.nih.gov/pubmed/1848536...Pubmed_RVDocSum

 

Age-related gene expression in Tourette syndrome.Lit L, Enstrom A, Sharp FR, Gilbert DL.

M.I.N.D. Institute, Department of Neurology, University of California at Davis, 2805, 50th Street, Room 2420, Sacramento, CA 95817, United States.

 

Because infection and immune responses have been implicated in the pathogenesis of Tourette syndrome (TS), we hypothesized that children with TS would have altered gene expression in blood compared to controls. In addition, because TS symptoms in childhood vary with age, we tested whether gene expression changes that occur with age in TS differ from normal control children. Whole blood was obtained from 30 children and adolescents with TS and 28 healthy children and adolescents matched for age, race, and gender. Gene expression (RNA) was assessed using whole genome Affymetrix microarrays. Age was analyzed as a continuous covariate and also stratified into three groups: 5-9 (common age for tic onset), 10-12 (when tics often peak), and 13-16 (tics may begin to wane). No global differences were found between TS and controls. However, expression of many genes and multiple pathways differed between TS and controls within each age group (5-9, 10-12, and 13-16), including genes involved in the immune-synapse, and proteasome- and ubiquitin-mediated proteolysis pathways. Notably, across age strata, expression of interferon response, viral processing, natural killer and cytotoxic T-lymphocyte cell genes differed. Our findings suggest age-related interferon, immune and protein degradation gene expression differences between TS and controls.

 

http://www.ncbi.nlm.nih.gov/pubmed/1750347...Pubmed_RVDocSum

 

Lit L, Gilbert DL, Walker W, Sharp FR.

Genetics Graduate Group, Department of Neurology, M.I.N.D. Institute, University of California at Davis, Sacramento, CA 95817, USA. Llit@ucdavis.edu

 

Gilles de la Tourette Syndrome (TS) is a heritable, neurodevelopmental disorder characterized by motor and vocal tics. As no single gene or region has emerged from standard linkage approaches, TS may result from several as-yet-unidentified genetic factors, and may also occur due to infection-triggered, autoimmune processes. Etiological or pathogenic differences might result in clinically indistinguishable TS subgroups. We have previously used whole genome human oligonucleotide microarrays in an attempt to identify patterns of gene expression in blood linked with TS. In this proof-of-principle study, we applied Principal Components Analysis to a previously collected set of 16 familial TS and 16 control blood samples to identify subgroups. Fourteen genes, primarily Natural Killer Cell (NK) genes, discriminated between TS and all controls. Granzyme B and NKG7 were confirmed using RT-PCR. Five probesets (four genes) reside in chromosomal regions previously linked to familial TS or obsessive-compulsive disorder. Using the 14 genes, a Principal Components Analysis as well as a cluster analysis identified a TS subgroup (n = 10/16) that overexpressed the NK genes. 7/10 subjects within this subgroup were diagnosed with attention-deficit hyperactivity disorder (ADHD), suggesting that this expression profile might be associated with TS and co-morbid ADHD. Principal Components Analysis of gene expression in blood may be useful for identifying subgroups of other complex neurodevelopmental diseases, and the gene expression profile identified in this study may provide a biomarker for at least one subgroup of heritable TS. © 2007 Wiley-Liss, Inc.

http://www.ncbi.nlm.nih.gov/pubmed/1710182...Pubmed_RVDocSum

 

 

The future of genomic profiling of neurological diseases using blood.Sharp FR, Xu H, Lit L, Walker W, Apperson M, Gilbert DL, Glauser TA, Wong B, Hershey A, Liu DZ, Pinter J, Zhan X, Liu X, Ran R.

Department of Neurology and Medical Investigation of Neurodevelopmental Disorders Institute, University of California-Davis Medical Center, Sacramento, CA 95817, USA. frank.sharp@ucdmc.ucadavis.edu

 

Sequencing of the human genome and new microarray technology make it possible to assess all genes on a single chip or array. Recent studies show different patterns of gene expression related to different tissues and diseases, and these patterns of gene expression are beginning to be used for diagnosis and treatment decisions in various types of lymphoid and solid malignancies. Because of obvious problems obtaining brain tissue, progress in genomics of neurological diseases has been slow. To address this, we demonstrated that different types of acute injury in rodent brain produced different patterns of gene expression in peripheral blood. These animal studies have now been extended to human studies. Two groups have shown that there are specific genomic profiles in the blood of patients after ischemic stroke that are highly sensitive and specific for predicting stroke. Other recent studies demonstrate specific genomic profiles in the blood of patients with Down syndrome, neurofibromatosis, tuberous sclerosis, Huntington disease, multiple sclerosis, Tourette syndrome, and others. In addition, data demonstrate specific profiles of gene expression in the blood related to different drugs, toxins, and infections. Although all of these studies are still preliminary basic scientific endeavors, they suggest that this approach will have clinical applications to neurological diseases in humans.

 

 

 

http://www.ncbi.nlm.nih.gov/pubmed/1571084...Pubmed_RVDocSum

 

Blood gene expression profiling of neurologic diseases: a pilot microarray study.Tang Y, Gilbert DL, Glauser TA, Hershey AD, Sharp FR.

Department of Neurology and Neuroscience Program, University of Cincinnati, OH, USA.

 

BACKGROUND: Tissue gene expression profiling with arrays measures the transcription of thousands of genes. However, this approach cannot be readily used to guide clinical neurologic practice. OBJECTIVES: To determine whether clinical neurologic diseases are associated with unique patterns of up- and down-regulated genes in whole blood and to explore the possibility of using peripheral blood as a surrogate tissue in these diseases. DESIGN: Case-control study. SETTING: University-based pediatric and adult neurology clinics. PARTICIPANTS: Patients with neurofibromatosis type 1, epilepsy, or Tourette syndrome diagnosed using traditional clinical criteria; controls without disease; and controls with neurologic disease. MAIN OUTCOME MEASURE: Blood gene expression levels of greater than 12,000 genes, measured using U95A arrays. RESULTS: Neurofibromatosis type 1 and childhood epilepsy treated with carbamazepine or valproic acid are associated with distinct patterns of blood gene expression. Patients with valproic acid-responsive vs valproic acid-refractory epilepsy formed distinct subclusters. Tourette syndrome was characterized by several gene expression clusters. In 1 cluster, 6 genes-all associated with immune cell function-were overexpressed. CONCLUSION: Blood gene expression profiling can provide surrogate markers for neurologic diseases without obvious blood phenotypes.

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A couple questions for you. Do you suggest genetic testing? Have you done this for your boys? Would there be a way to see if they have a genetic predisposition for movement disorders?
Michelle, I haven't but would love to have this testing done eventually. It is well worth joining (easy) and reading the 2nd page/link. You will see info on so many pathways that we discuss in regards to these conditions.

 

http://www.holisticheal.com/store/product....=124&page=1

 

Methylation Pathway Analysis

 

625.00

 

This page will give you info on genetics 101

 

http://www.ch3nutrigenomics.com/phpBB2/viewtopic.php?t=2800

 

++ means homozygous and you have 2 copies of the mutations one from each parent

 

+- Heterozygous and you have one copy of the mutation

 

-- No Mutation

 

 

Also one of the research articles you posted was written by D. Gilbert who is head of ped neurology at Cincinnati. He has also done research on PANDAS. Would you suggest I make a trip to see him since we are in Ohio.

 

Seems he's listed on all 4 of the studies. He may be a great person for you to see. I'm pretty sure one of the Mom's called Dr. Sharpe. I think he came to the phone. Maybe you could get some info on Dr Gilbert from him and see if there is anything offered in the way of genetic testing or treatments, other than the standard drugs that are currently recommended.

 

http://biosci2.ucdavis.edu/FacultyProfiles...searcherID=2098

 

Frank Sharp

Professor

Neurology (School of Medicine)

MIND Institute - UCD Medical Center - Sacramento

MIND BLDG 2805 50th St/UCDMC

Office +1 916 703 0368

Lab

frsharp@ucdavis.edu; frank.sharp@ucdmc.ucdavis.edu

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I guess what I'm really trying to point out is that since we don't really know what's going on with the immune system in children with Tourette's or PANDAS, there had better be a very good reason to inject them with these vaccines and in many cases, PERSONALLY, the evidence that I see is not as compelling for many many of the vaccines as what my uneducated thoughts were
along thesse lines, thought I'd share :angry: Seems when they experimented on my newborn with mercury and aluminum and an immature BBB for a disease that he had virtually no chance of contracting as an infant/toddler/adolescent, they may have accomplished absoutely nothing. Informed concent forms are a JOKE

 

http://uk.reuters.com/article/healthNewsMo...E49M86P20081023

 

Hepatitis B vaccine protection may wane in teens

 

On the other hand, only seven of the other 97 participants had relatively high antibody levels against hepatitis B at the 15-year follow-up, the researchers report in The Pediatric Infectious Disease

 

For parents who may be being pressured about the HPV vax, here's just one of almost daily articles questioning the safety of this vax

 

http://articles.mercola.com/sites/articles...ne-dangers.aspx

 

Filby believes that not enough is known about the effects of the vaccine on children with pre-existing medical conditions and weakened immune systems. She says, "We simply do not know whether the vaccine interacts with other medication or medical conditions, and the manufacturers have not studied it yet. This could be a very valid reason why some families and schools might hesitate or opt out."
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Caryn, I thought you might find this first article interesting. bolding mine

 

 

http://www3.interscience.wiley.com/journal...=1&SRETRY=0

 

Conclusions We postulate that celiac disease patients may have a significant predisposition to hepatitis B vaccine nonresponse. Both celiac disease and hepatitis B vaccine nonresponse is genetically mediated. Celiac disease patients may have a failure of induction of humoral immune response needed for development of long term immunity; the mechanism for this is unclear.

 

 

http://rheumatology.oxfordjournals.org/cgi.../full/38/10/978

 

Conclusions. Hepatitis B vaccine might be followed by various rheumatic conditions and might trigger the onset of underlying inflammatory or autoimmune rheumatic diseases. However, a causal relationship between hepatitis B vaccination and the observed rheumatic manifestations cannot be easily established. Further epidemiological studies are needed to establish whether hepatitis B vaccination is associated or not with an incidence of rheumatic disorders higher than normal.

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http://rheumatology.oxfordjournals.org/cgi.../full/38/10/978

 

Conclusions. Hepatitis B vaccine might be followed by various rheumatic conditions and might trigger the onset of underlying inflammatory or autoimmune rheumatic diseases. However, a causal relationship between hepatitis B vaccination and the observed rheumatic manifestations cannot be easily established. Further epidemiological studies are needed to establish whether hepatitis B vaccination is associated or not with an incidence of rheumatic disorders higher than normal.

Geeze, Kim--

If this is true then my son may have contracted the tic disorder because of his celiac--

http://www.pedrheumonlinejournal.org/April/reviewarti.htm

 

He did get the series of Hep Vaxes, the third of which he got the same time as his varicella, about a month before he began his sniffing tic at age 3 1/2.

We do not consider ourselves PANDAS, but this certainly does beg the question for folks dealing with PANDAS. It could be an underlying factor for some.

 

Our son, thankfully, never got as sick as what we have read about in SC or PANDAS, especially when reading cases in places like WeMove.org. He also resolved his condition when we changed his diet, but that took about six months and was a slow process of healing. I do believe that the neuro problems are related to the gut in mysterious ways. Just a pity there isn't a one-size-fits-all cure for tics.

 

Thanks for the info. Very fascinating. BTW, I know a few Celiacs that had hep vaxs and never titered properly afterwards, so this study is right on the money as far as I'm concerned. Strange, isn't it? I think kids should be screened for celiac gene at birth much like PKU screening. So simple, and could stop the progression of a whole slew of autoimmune disorders. Maybe someday. I know I put my youngest on a gluten free diet and refrained from vaxing him after Tigger's dx. He is by far the healthiest of the three boys. Hm.

Makes you wonder.....

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