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Everything posted by colleenrn

  1. bmom, Do you know what the retired immunologist means by treating it with proteins? Thanks, Colleen
  2. 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.
  3. 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
  4. 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.
  5. 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
  6. 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/
  7. 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
  8. 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.
  9. 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
  10. Yes, unfortunately the liquid Zithromax also has Red 40 in ti. The usual dose for Keflex is 25 to 50 milligrams for each 2.2 pounds of body weight per day, divided into smaller doses. It is given for 10 days. Our pharmacist said it is fine to open the capsules and dump in water. It tastes bad, but I could get my 4 and 6 yr. olds to take it. You do not want to mix Keflex with anything citrus.
  11. Michele, Penicillin VK suspension (oral liquid) has as a main ingredient Red D & C 40. My son goes berserk when he has Red 40. He was on liquid Keflex for a PANDAS flareup b/c of strep and was out of control after 24 hrs. on it. I called our Dr. and asked if he could prescribe Keflex capsules that I could dump the powder into water which he did. I checked with the pharmacist who said that was fine to do. After seeing such an incredible behavioral change with the Red 40. I started googling it and found this is a very common occurence with children and Red 40, in particular. I don't know if this is an issue for your child, but something to look into. If he is on Pen VK for strep, Augmentin may be a better choice and it does not have red dye. Most capsules of any antibiotic are fine to open and dump into water, they just may taste bad. Make sure to OK it with a pharmacist. Colleen
  12. C.P. and Lenny, Loud snoring and mouth breathing can definitely be caused by obstructive sleep disorder which can be a direct result of large tonsils and adenoids. My daughter snored loudly since she was just a toddler. My son did the same but it would turn into sleep apnea where he would completely stop breathing for more than 6 -10 seconds (that was so scary) whenever he had an upper respiratory illness. Neither of the had problems with low weight gain, but obstructive sleep disorders can definitetly cause failure to thrive (failure to gain weight and grow at the appropriate level). Our pediatric ENT said if the tonsils are large, the adenoids will be also. The large adenoids are what causes trouble with breathing through the nose. I took my son to another pediatric ENT (just to be sure he needed them out) and she used a mirror on a long handle (looks like the mirror a dentist uses but with a much longer handle) to view his adenoids, which were also huge. Since having the T & A, as it is called, both children stopped snoring within a week and no longer snore. Here is on article that may explain things better. http://www.aafp.org/afp/20040301/1147.html Colleen
  13. Lenny, She was strep free, tic free for 15 months after her tonsils and adenoids removed. That was about 4 1/2 years ago. She still has flare ups when she gets strep, but she doesn't get it nearly as often as when she had tonsils. Also, my son is now 6. He had his tonsils and adenoids removed when he turned 5 b/c they were so large that whenever he had a cold, virus, or strep and they would increase in size, he would have sleep apnea every night during the course of each illness. He has never been "formally" diagnosed with PANDAS, but I believe he has it b/c as with my daughter the only way I knew they both had strep was watching their behavior change. Neither would get the typical sore throat, fever, or even have a red throat with strep. My daughter would immediately show tics and OCD behaviors. My son was different. He would become extremely emotional, throw frequent screaming fits, and just acted very labile. Does your son have frequent strep throat or even throat infections (tonsilits) that does not test positive for strep? Does he snore when sleeping, especially when he is sick? If so, you may want to go to a different pediatric ENT for another evaluation b/c these are all reasons to consider a T & A (tonsilectomy and adenoidectomy). Large tonsils and frequent infections can cause poor weight gain in children. We saw a big improvement after surgery with both children. Colleen
  14. Hi. My daughter was diagnosed with PANDAS when she was 5 and after 10 months of recurrent strep throat and going through a lot of different antibiotics (Pen VK, Amoxicillin, Augmentin, Clindamycin) we took her to a pediatric ENT who took one look in her throat and could not believe how huge her tonsils were. When he removed her tonsils and adenoids he said they were so "cryptic" that the antibiotics were not getting to all of the strep hidden in the crypts, nor would it ever have gotten to it. Chronic tonsil infections and enlarged tonsils can lead to a condition called chronic cryptic tonsillitis. The tonsils contain many small pockets and infoldings called crypts. Initially, on a course of antibiotics her tics would disappear or at least dramatically decrease until she finished the antibiotic at which time the tics and OCD behaviors would return. She was completely symptom free and strep free for over a year. You may want to consider taking your child to a pediatric ENT for evaluation. I am the one who posted about the ineffectiveness of penicillin on strep. Someone recently posted the link to the article about this. The evidence is out there about Cephalosporins and Azithromycin being the drug of choice for strep, unfortunately a lot of physicians are sticking with penicillins. There are many cephalosporins and also Azithromycin (Zithromax) that come in liquids. I wish you lots of luck! Hang in there!! Colleen
  15. Hi Kim, I would say "all of the above". For one, the multiple vaccines my daughter received beginning at age 2 months when her immune system was not developed. Two, the many, many toxic ingredients that all vaccines contain such as aluminum, alcohol, glycerine, neomycin,formaldehyde,gelatin,blood and cell products from diferent animals, etc...., not to mention other contaminants. I also wonder if my daughter was predisposed in someway to not tolerate the assault of vaccines on her immune system. She always had strong reactions to the vaccines. She also had shingles this past Fall and she is only 10 yrs. old AND she had received the varicella (chicken pox) vaccine already when she was younger, BUT that is a whole other issue with vaccines. I am MUCH more careful with vaccines with my younger children as I truly believe that is what got the ball rolling with my daughter's PANDAS. Colleen
  16. In regards to the antibiotic first or tics first question, I know when my daughter was 1-3 she was on antibiotics 3-4 times for an ear infection (all after vaccinations- which is a whole other discussion as I feel that is the main cause of her immune system break down), but for the most part was healthy until she turned 5, exploded with tics and OCD one day and had strep throat. I believe that there could be a lot of factors that can affect children's immune systems, antibiotics could be one. For the first 3 years when my daughter's tics/OCD increased they would disappear 100% when treated with antibiotics. The past 2 years her tics drastically decrease when treated with antibiotics, but do not always completely go away. I am not sure, but am very afraid, that is is a cummulative effect from each and every time her basal ganglia has been attacked. I pray that one day we will have all the answers. Colleen
  17. My doctor recommends the probiotic called Megaflora. It contains a total of 20 billion viable cells consisting of: Lactobacillus rhamnosus; Bifidobacterium bifidum; Lactobacillus acidophilus; Bifidobacterium infantis; Bifidobacterium longum; Streptococcus thermophilus; Lactobacillus plantarum; Lactobacillus salivarius; Lactobacillus reuteri; Lactobacillus casei; Lactobacillus bulgaricus; Lactobacillus acidophilus DDS-1; Lactobacillus sporogenes; Bacillus laterosporus
  18. Loren, It is so unfortunate for our children that SO many doctors give out incorrect information. It is quite common for children with PANDAS to have very atypical symptoms of strep. In the past 5 1/2 years my daughter has tested positive (throat culuture) at least 40-50 times and in ALL of those instances she only had a fever a handful of times. The "typical" symptoms of strep are fever, sore throat, red throat with or without pus, headache, and stomach pains. When my daughter was very young she had more fevers and the occasional sore throat when she had strep. I learned over time to go by her increases in tics/OCD behaviors as a red flag that she has strep and not to go by her physical symptoms (or lack of). I can not tell you how many drs. and nurse practitioners have looked at my daughters throat and said "Oh, her throat isn't even red and she has no fever". It was at my insistence that they do a throat culture and to their surprise it would come back positive. We are now with a practice with two drs. and a nurse practitioner who know our situation very well and they know that if I say she probably has strep we do a 72 hr. culture no matter what her symptoms are. If the culture comes back negative, but she is still experiencing a big increase of tics, we do a course of antibiotics and 9 out of 10 times she greatly improves. The most frustating thing for me in the past 5 1/2 years (besides watching my daughter struggle with this illness) has been the INCREDIBLE LACK of knowledge regarding PANDAS and the number of doctors who don't even know it exists. It has been in medical literature since 1985 and I feel it is unacceptable for a physician (especially pediatricians and neurologists) to not be educated on this illness. I live in Charlottesville, VA where the University of Virginia is located and I know for a fact that they are teaching about PANDAS at UVA's medical school. I just don't know if they really teaching or just "mention" it. Just keep hanging in there, read as much as you can to educate yourself on the illness and insist that a throat culture be performed. If his tics are strep related he needs to start antibiotics. Could you call the first doctor back and tell him you have found out more PANDAS information and have been advised to do a throat culture? The doctors at NIMH are very willing to speak with a physician regarding possible PANDAS. Over the years I have directly contacted them and my doctors have also. Here is their contact info: Susan E. Swedo, MD, Chief 10 Center Drive MSC 1255 Building 10, Room 4N208 Bethesda, MD 20892 (301) 496-5323 FAX: (301) 402-8497 Good luck!! Colleen
  19. Loren, I am so glad that you are able to get the titers done. Here is a little info on them: The anti-streptococcal antibody titer determines whether there is immunologic evidence of a previous strep. infection. Two different strep. tests are commercially available: the antistrepolysin O (ASO),which rises 3-6 weeks after a strep. infection, and the antistreptococcal DNAase B (AntiDNAse- titer, which rises 6-8 weeks after a strep. infection. An elevated anti-strep. titer (such as ASO or AntiDNAse- means the child has had a strep. infection sometime within the past few months, and his body created antibodies to fight the strep. bacteria. Some children create lots of antibodies and have very high titers (up to 2,000), while others have more modest elevations.Some children have "positive" antibody titers for many months after a single infection. It would still be beneficial to do the throat cultur for 72 hr. b/c it can take up to three weeks to see a rise in antibodies, so your son's titers could possibly come back not elevated yet. I know that no one wants to use antibiotics if not necessary, but in the case of possible PANDAS, given that your son's symptoms came on quickly, and knowing that if it is strep related you will see noticeable improvement in a few days on antibiotics, I feel (and my different doctors all agreed when we were in this same exact spot with our daughter) it is completely warranted to just do a course of antibiotics. Over the past 5 yrs. when my daughter has a big flare up of tics/OCD behaviors and tests negative for strep, we have given her a course of antibiotics and the tics/OCD start to diminish over 2-3 days (sometimes there is even a huge decrease in symptoms after two doses). This tells me she has strep, but it must be elsewhere in her body. If you do go the route of antibiotics, I would just suggest not letting them give your son Amoxicillin or penicillin, b/c they have high failure rates with strep (up to 25% failure rates). Azithromycin is good and also cephalosporins are good. Hang in there! Colleen
  20. Hi Loren, My daughter has PANDAS which started as tics and OCD behaviors one day "out of the blue" . This was when she was 5 years old and she is now 10 1/2 and doing well (she still deals with tics whenever she gets strep or has a bad viral illness). I just had one piece of information to add to all of the great info everyone is giving you and it is in regards to the strep culture (Throat swab). When my daughter was first diagnosed we took her to the NIMH (National Institute of Mental Health) where we met with Dr. Susan Swedo who is considered one of the top experts on PANDAS. She instructed us to insist whenever they do a throat culture for strep on my daughter that it be grown out for a full 72 hrs. Normally they grow the cultures out anywhere from 24-48 hrs. She said that for some reason in children with PANDAS it can take a full 72 hrs. for the culture to show up positive. It has been a battle and struggle at times to have this done b/c most doctors feel 36-48 hrs. is long enough, but we have seen my daughter's cultures become positive at 72 hrs. when they were still negative at 48 hrs. I wish you all the best luck! Colleen
  21. Sorry about the last post! I am very new to this forum (not new to PANDAS) and I have not gotten the hang of how to post to a specific topic. PLUS I am 99% of the time holding and nursing my almost six month old baby while typing. I was trying to respond to Kim about probiotics. I use one that I get from my doctor called Mega Flora and I think it helps counteract the effects of the antibiotics. You asked when the medical community is going to get with the idea of the importance of probiotics. In my experience as a nurse and a mother, I have found pretty consistently, that unfortunately doctors have VERY little knowledge of nutrition, vitamins, supplements, probiotics, and most alternative treatments. They just don't see it as a priority in what they teach med students. Nursing students have much more knowledge on these issues, so maybe finding a good nurse practitioner and good homeopathic physician would be most beneficial. Since diagnosing my daughter on my own using the Internet (having it confirmed by meeting with Dr. Susan Swedo at NIMH in 2001) I have asked MANY doctors and medical students if they have any knowledge about PANDAS and most do not. I live in Charlottesville, Virginia where we have a huge teaching hospital (University of Virginia) and recently found that they are FINALLY "touching" on the topic of PANDAS!! We just need to keep doing what we are- educating ourselves, educating our health care workers we take our children to, and advocating for our children. I tell everyone I can about PANDAS in the hope of one day having it known by all! I have three other children(besides my 10 yo daughter with PANDAS) ages 3, 5, and six months and I fear I will be dealing with PANDAS for a long time to come. My 5 year old already had his tonsils and adenoids removed after several bouts of strep last spring. He did not show the OCD/tics mt daughter has, but I would know he had strep b/c he would all of a sudden become extremely labile and throw lots of fits when he had strep. Not sure about my four year old yet- he is very hyper and labile, but that's a story for another time. My gut tells me they with all deal with PANDAS. Good luck to you! Colleen
  22. My daughter was diagnosed with PANDAS almost five years ago. To make a very long story short, as far as antibiotics go, Amoxicillin worked the first 3-4 bouts of strep, then stopped working. We tried Pen VK and Augmentin, but eventually those also stopped working. We finally put her on Clindamycin and within 24 hrs. she was tic free, but everytime we tried to stop the Clindamycin the tics would return within 1-2 days. We then got her tonsils and adenoids out and she was strep free for 1 1/2 years!! Her tonsils and adenoids were so infected with strep, so the antibiotics would begin to work, but we could never fully get rid of the strep. By removing them, we removed the main source of strep. When she started getting strep again 1 1/2 years later we tried Amoxicillin and it would seem to start working for a few days, but then as her symptoms were going away they would return again. We then switched to Augmentin (Amoxicillin with something added to it) with great results for a while. Eventually the Augmentin did not work either. I found out soon thereafter that there is a 25% failure rate with Penicillins for strep throat and although you read it everywhere that is is the best treatment, IT IS NOT. Please read this article b/c it explains the best treatment for strep is Cephalosporins. Good luck! http://www.medicalnewstoday.com/medicalnews.php?newsid=35136
  23. Print this article out from the link I included below and show it to your doctor. Amoxicillin can work in the beginning, but it has a 25% failure rate. After three courses of Amoxicillin when my daughter had just started getting strep four years ago it stopped working. We the used Augmentin successfully until that did not work anymore. We now use Cehalosporins with great success. If your doctor will not immediately switch your son to a cephalosporin you should take the article to someone who will. It has been proven that penicillins are no longer the best treatment for strep, but unfortunately a lot of doctors are not yet educated on this finding. http://www.medicalnewstoday.com/medicalnews.php?newsid=35136
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