colleenrn

The info on strep carriers I got from the book written by an MD who sees a lot of PANDAS kids in his practice. It is called The Clinical Management of Streptococcal Pharyngitis by Michael Pichichero. I would be glad to post what info he gives, but it will be later in the day after I get my kids off to school. He also talks about how they are seeing an increase in kids being strep carriers after being on Penicillin to treat an active strep infection, which I found very interesting. I will post it as soon as I can. Colleen

My daughter is 11, got the varicella vaccine at age 1, and then shingles at age ten. Yes, you can still get chicken pox even if you are vaccinated. It seems to break out every year at our elementary school and the majority of the kids are vaccinated. They say if you are vaccinated and get chicken pox it is milder, but I don't know that firsthand. My plan is to let my three boys get chicken pox and my daughter will get her "booster" from being around them. I am just nervous that if her immune system at the time is messed up that she could get shingles again. Any of us can get shingles, but is is mostly seen in the elderly, so we would most likely not get it until we grow older, God willing. When my daughter got shingles there was a boy in her class with chicken pox. She was not sick at the time, so we assumed it was b/c of her immune system being "off" from PANDAS. I had a lot of bloodwork done on her at the time to make sure there was not something else going on that caused her to get shingles at such a young age.

CP, This is the religious exemption form I used. http://www.vaclib.org/pdf/va.txt

CP, I am Catholic also, but the form I filled out did not have a place to specify relgion. If you can get a medical exemption, that would probably be best, BUT you have the right to a religious exemption and you do not have to justify it to anyone. Here is a link that explains it. Colleen http://www.vaclib.org/legal/yourrights.htm

I live in Virginia and we only have medical and religious exemptions. I did the religious exemption for my youngest three children and had to have it notarized (at library). Two of my children that are in school recently had pertussis and I held my breath waiting for major fall out b/c they were not vaccinated. Not one person said anything to me about them not being vaccinated. You can do a religious exemption (if your state has one) no matter what religion you practice. Good luck. Colleen

Your body can fight strep and you become symptom free without antibiotics, but you usually become a carrier which means you could infect others or reinfect your daughter.

I emailed both Oprah and Dr. Phil years ago explaining PANDAS b/c if more people are educated maybe we would get more answers and better care. Neither show responded. I try to educate whoever I can about PANDAS b/c I think it is ridiculous to step foot in ANY pediatrician, family practice, or neurologist office and have them not know about PANDAS. It has been in ALL of the literature for the past 20 years and when I meet a physician who gives direct care to children and they are not aware that PANDAS exists, I immediately know they are not current on their continuing education or on current literature. I find that unnacceptable.

Kim, My daughter shows and increase in neuro symptoms with any illness, but I remember thinking that she did not have a big increase in neuro symptoms, maybe just slightly increased. When my sons contract chicken pox I am nervous that with her "messed up" immune system, she could have a reoccurence of shingles. Colleen

Faith, Pertussis (whooping cough) usually starts with a cold, sneezing, mild cough, then within 1-2 weeks the cough worsens. None of my children got the "typical"whooping sound. It started with my 7 yr. old and I took him in the early stages to be tested after the school nurse said they had one confirmed case. The nurse practioner I took him to is very respectful of a parent's right to decide about vaccines and was not negative towards us in any way. She tested him b/c I insisted as she did not believe he had pertussis b/c the cough had not worsened at that point. B/c we tested him so early, we began antibiotics with myself and my other children before they had symptoms, so the course of the illness was less serious and shorter. Colleen

I have posted before about my daughter's reaction to the varicella vaccine. She received it at age one, had a high fever and rash the following week. When she turned 10 she had a full blown, horrible case of shingles. Now if the vaccine was supposed to keep her from getting chicken pox, then how did she get shingles? Shingles is a reactivation of varicella in someone who has HAD chickenpox. I feel that the varicella vaccine is one of the most dangerous ones out there. I just registered my third child for kindergarten and was very upset to see that the CDC is now recommending the first varicella vaccine at age one and ANOTHER DOSE of VARICELLA VACCINE between the ages of 4-6, pre-K. The thing that horrified me the most is that they are saying it is perfectly safe to give the first at age one and the second as few as 4-8 weeks later. I feel this will devastate many, many children, to be injected with varicella twice and so close together. I did not, nor will I, vaccinate my other three children. On the note of non vaccinated children, and this is ONLY my experience, I am not suggesting it is right for others, BUT my vaccinated 11 year old and my unvaccinated 7, 5, and 1 1/2 year old recently had pertussis and made it through perfectly fine. It was one of the diseases I most dreaded and feared when we decided not to vaccinate the younger three children. They were all over it within less than two weeks and now they should be covered for life.

Tracy, My daughter was diagnosed with PANDAS 6 1/2 years ago. I always give her antibiotics when she has a flareup, even if the swab comes back negative and she responds to the antibiotics. Her swabs used to come back positive each time she had a flareup in the first few years, but a lot of times they are neg. now, but I know she has strep b/c of her huge change in behaviors ( anxiety, tics). Another thing I have found and I don't know if others have had this experience, is that her quick strep swabs are always negative and she is physically asymptomatic (no fever, red throat, sore throat). I would recommend doing a course of antibiotics and making sure they are effective. We had to change antibiotics several times over the years as the ones that had previously worked no longer did. Colleen

I just went through this with my children. Three of my four children were diagnosed with pertussis last week and all of us had to go on Zithromax. The compounding pharmacy I was going to use so that they did not have to take the Zithromax liquid with red dye said it would cost me over $100 to have it compounded. What we did instead was to crush the Zithromax white tablets and mix it in applesauce or anything you can get your child to take. It tastes bad, but they dealt with it. Most Zithromax comes in pink caplets, but this pharmacy gets it from a manufacturer that does not make it with coloring. The pharmacist said that was perfectly fine to crush the pills. I did this for my sons ages 1, 5, and 7. I have also opened Keflex capsules and dumped the powder in juice, which the pharmacist said was fine. You can do that with a lot of meds if you just check with the pharmacist first. Good luck.

Evie, Does your son still have his tonsils and adenoids? In my daughter's case, each antibiotic stopped working until we had her tonsils and adenoids removed. Hers were also very large and caused slight apnea as well as very frequent strep throat. Our ENT said her tonsils were so cryptic (full of holes) that the antibiotics were not getting rid of the strep. Just thought I would mention that in case that is a possibility.

I bought the management of strep book by Michael Pichichero off Amazon yesterday and would be more than happy to scan the chapter about PANDAS and post it. I am not sure how to post it once it is scanned though. Colleen

I have two port wine stains that I have had since birth (I am 37) and I believe all four of my children do also. My 2nd child has several cafe late marks and a strange raised are (flesh colored with bumps) that he has had since close to birth. I have showed it to several doctors, including dermatologists who all have no idea what it is. My daughter has some weird moles/marks. All of my children freckle extremely esily once they pass their 4th birthday. I am really curious how this could be linked, but I also don't understand the link in the articles you posted. Thanks, Colleen

My daughters tics and OCD used to go away while on antibiotics, but would return within 1-3 days after finishing the course. This continued for about eight months, at which time, she had her tonsils and adenoids removed. The ENT said that the reason her symptoms would return after finishing the antibiotic was because her tonsils were so cryptic (full of many holes) that the course of antibiotics would work well enough to kill the strep, but b/c of all the holes in hert tonsils the antibiotic would never completely erradicate the strep and it would recolonize, causing the symptoms to return. Once her tonsils and adenoids were out, she was strep free and symptom free for 1 1/2 years, at which time she began to get strep again. I am not suggesting that anyone have their child's tonsils removed, but in my daughter's case she had so many cases of strep and her tonsils and adenoids were large enough that it was causing some obstruction at night, especially whenever she was sick. Looking back, she began snoring at night at a very early age (before 2) and most likely always had large tonsils. My son has his removed when he was 5 b/c he had sleep apne they were so large. My third child has been snoring a lot the past year and has started to have a few seconds of apnea, only when he is sick and I guess his tonsils are a little enlarged. The ENT has seen a lot of kids with PANDAS and has seen this pattern of the tics/OCD coming back time and time again when the child is not on antibiotics.

bmom, Do you know what the retired immunologist means by treating it with proteins? Thanks, Colleen

My daughter received all the required vaccinations, beginning at 2 months of age in 1996. My doctor convinced me to give her the old DPT vaccine at 2, 4 and 6 months erven though they had already recommended the new DTap. I later found out that a lot of doctors had so much DPT still on their shelves that it was common to give it to use up the supply. I, unfortunately, new nothing bad about vaccines at the time. I was taught in nursing school that vaccines were good and very much needed. She received the chicken pox vaccine and the MMR on the week before her first birthday. She had a terrible reaction (rash and high fever) a week later. Looking back to that time I realize that was the time when she started doing something bizarre. She wanted to constantly poke at her belly button and would freak out if she had a onsie on and could not get to it. I am pretty sure that is when different behaviors started up and I attribute it to the vaccines. When she turned five she went to bed "normal" and woke up the next day with major OCD behaviors and tics. She was diagnosed with PANDAS. Forward fast to the age of ten. She came down with a horrible, terrible case of shingles. Since she was vaccinated against chicken pox, she, according to doctors, should never get shingles b/c she never had the chicken pox virus in her. She was very ill for weeks and in excruciating pain and it was heartbreaking to see her go through that. I have a lot of guilt about vaccinating her b/c I truly believe that was the main culprit of the PANDAS. There definitely could be other factors, genetic predisposition, but I believe the vaccines made it so much worse. I also have a one year old, five year old, and almost seven year old. The 5 and 7 year olds have each received 2 doses of polio and the one year old has had one dose of polio, nothing else. My 5 and 7 year old sons have never been formally diagnosed with PANDAS, but show some mild signs whenever they get strep. My 7 year old have a tonsillectomy & adenoidectomy when he was 5 b/c his tonsils/adenoids were so huge it caused sleep apnea. My daughter had hers removed also when she was 6 for the same reasons. My 5 year old had HUGE tonsils and it beginning snore loudly at night which is how the others sleep apnea began. My original plan was to get the full 4 polio vaccinations for all three boys, but now I am scared that I will make things worse. I just wanted to share my vaccine story with the group.

Hi. My daughter is 11 and was diagnosed with PANDAS at the age of five. The way they "discovered" PANDAS was studying Syndenham's Chorea, which is very similiar to PANDAS, but instead of just tics, there are more exagerated movements, possibly what you are describing with your daughter. The thing with Syndenhanm's Chorea is that is can show up months after a strep exposure and the blood titers for strep would be negative at that time. The behavioral issues are the same as PANDAS also. Just thought I would mention this in case you have not explored that possibility. Godd luck with everything. I know how stressful it is. Here is one link with more info. http://www.wemove.org/syd/ Colleen

I am not sure. I took my daughter to a pediatric allergist about 1 1/2 years ago to test her for an allergy to Augmentin after she developed hives while taking it (it turned out she was not allergic). But, during the course of the visit after discussing which antibiotics she had taken for strep, he said he was going to write a letter to my doctor stating he felt Penicillin was "adequate" for treating my daughter's strep. He actually was taking it upon himself to "correct" what he thought my doctor was doing wrong in prescribing cephalosporins. I should have told him how I did not agree, as I have seen first hand that it does not work on her strep, but didn't and never plan on seeing him again. I guess it is like in any and all professions, everybody makes mistakes sometimes. He may be going on old research or is just stubborn to accept that a treatment that used to be the gold standard, is just not anymore. A lot of doctors, if "bugged" enough by a persistent parent, will just give in and try it your way. If not, there are many doctors who will go along with the newer drugs. I was lucky that my doctor and his two partners ageed with the research about penicillin not being the best. Could you print out the articles and send them to him with a letter stating your reasons for not wanting to use penicillin and wanting to try a cephalosporin? Whatever you decide, I wish you the best.

CKJ, Cephalosporins are grouped into "generations". First generation cephalosporins are the oldest such as Keflex, Duricef, Cefadyl. Second generation are a wider spectrum antibiotic, less resistant and examples are Ceftin, Ceclor, Cefzil. Third generation cephalosporins cover an even broader spectrum of organisms and are Omnicef, Suprex, Vantin. There are even fourth generation cephalosporins that are the newest, but reserved for very serious infections that do not respond to the older cephalosporins. In general they try to start with first generation, reserving the next generations for use with infections that do not respond to the current cephalosporin being used. My daughter has responded great to cephalexin (Keflex). They can be used prophylactically also. Colleen

This is a very short video (about one minute) that does a good job explaining why penicillin is not the drug of choice for strep throat. There is also an article below the video, giving more detail. http://www.sciencedaily.com/videos/2006-10-07/

Michele, I am so sorry that you or anyone has to go through that. The evidence is clear that Penicillin is no longer the best choice in treating strep and I don't know why a doctor, when presented with this, would not make the right choice. All of my doctors agree that Penicillin is not the best choice. I have even been seen at a walk-in clinic on a Sunday when my doctor's office was closed and those doctors agree that penicillin is not the best choice. You always have the option of going to a different doctor. I wish you the best of luck. If there is anything I can do to help, please let me know. I know how hard dealing with this can be. Colleen

Michele, Look at www.feingold.org Ther is a lot of good info. My sister has had her 3 children on it for years with good results.

Michele, I am so sorry for what you are going through now, especially with your doctor. I have been there before and ended up "firing" two of our doctors as they would not consider the "evidence" I presented to them related to the treatment of strep/ PANDAS. I am a registered nurse and am aware that some physicians take awhile to "come around" to new treatment options, but keep in mind that they are just people who work for you and if you are not satisfied with their job you can move on to a physician who will work with what you feel is best for child. Could you show him some of these articles that show the failure rate of penicillin and the success rate of cephalopsporins? Sometimes physicians don't know what mothers know and just need to be shown such. Here are some links to articles that may help: http://findarticles.com/p/articles/mi_m322...71/ai_n13684250 http://www.urmc.rochester.edu/pr/news/story.cfm?id=981 http://www.medicalnewstoday.com/medicalnews.php?newsid=35136 http://www.aafp.org/afp/20050315/tips/11.html http://www.sciencedaily.com/releases/2005/...51218111320.htm I will also pray for you and your family. Colleen