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Everything posted by colleenrn

  1. Strep B most definitely caused symptoms in my child. My 3 oldest children (6,8,12) had an increse in PANDAS symptoms (tics, very labile behavior) and at the same time, my 2 yo had what looked like a scarlet fever type rash on his abdomen, he was acting very wild, screaming, throwing fits, and was having short spells of apnea during his sleep. I had them all cultured, as well as myself. The three oldest cultured negative for sterp, but responded very successfully to Zithromax. My two year old cultured positive for strep B which, to this day, has me very puzzled. I cultured positive for Beta strep, BUT NOT A, B, C or G. We all went on Zithromax with good results. In trying to figure this all out and researching like crazy, I have two theories: 1. Group A strep can be misinterpreted as Group B ( I read this on different laboratory sites- it can also depend on the level of experience of the technician reading your results) OR 2. Group B can cause PANDAD symptoms. In my children, when they culture negative for strep, BUT have PANDAS symptoms AND respond to antibiotics, I believe it is twhatever bacteria they have that is causing symptoms and not just strep A. I was group B strep (GBS) positive in all four pregnancies, despite two rounds of antibiotics each pregnancy, so I wonder if I am a carrier of Group B strep and passed it to my 2 year old. I think the positive response toZithromax tells you that whatever strep it is/was, it caused PANDAS symptoms. In the beginning, when PANDAS was discovered, they believed it to be just strep A, but I thin ka lot of parents have seen other bacteria/viruses cause symptoms. Colleen
  2. The biggest symptom in my son's (6 and 8) PANDAS is ADHD behavior. I did not see this in my daughter. We have not used ADHD meds. I give him Omega3.6.9's and also have used (on and off) Calm Child. BUT, he rsponds most to being on an antibiotic. Colleen
  3. Pat, She has her ups and downs. She appears to be going through puberty, but the hormones have not all kicked in as she has not yet begun menstruating. The biggest mistake I feel I made with the treatment of her PANDAS, was not keeping her on prophylactic antibiotics, thus allowing her to be infected too many times with strep. She has been on prophylactics since October, with a short break here and there when she was vomiting with a virus. She recently had an ear infection while ON Zithromax and had a big increase in symptoms (mainly tics) that has not yet subsided. We have had tons of illnesses in our house with my other 3 children,including strep, so she is constantly been exposed to stuff. I do feel that her immune system IS stronger now than it has ever been throughout the course of her PANDAS. I pray she outgrows it and that there are no lasting effects, but the jury is still out on that one. THAT is why I am such a proponent of antibiotics. When this all started in 2001, I knew nothing of what I know now. I am trying to treat my younger children's PANDAS a little more aggresively, but who knows? Colleen
  4. http://books.google.com/books?id=RJOy1vy2R...1&ct=result This is another article about MRI results in children with OCD, showing an increase in size of the corpus callosum. Colleen
  5. http://www.ncbi.nlm.nih.gov/pubmed/10390719 The authors previously found significant abnormalities in the region of the corpus callosum (CC) connecting ventral prefrontal cortex and striatum in pediatric OCD patients compared to controls that correlated significantly with OCD symptom severity. The striatum is part of the basla ganglia. The basal ganglia is affected by the strep antibodies, which cause the tics/OCD/etc... This does not seem like it would be a coincidence, IMO. Colleen
  6. I wonder if the basal ganglia can be affected by strep antibodies, could it also show up as some kind of abnormality of the corpus callosum? Could this be related to PANDAS? OR like EaMom mentioned, could it be there in addition and unrelated to the PANDAS? I wish you the best of luck! I will be thinking of you. Colleen
  7. Mom MD, I am sorry to hear about your son, but I am glad you have all the resources that you do. My biggest piece of advice at this point (MY daughter was diagnosed with PANDAS almost 8 years ago and my 6 and 8 yo son's also are PANDAS) is to switch him off of Amoxicillin asap. Can you do Clindamycin that your other child is on? This article explains why Amoxicillin and penicllin have such high failure rates. You need to aggressively treat strep and Amoxicillin is not the best. When my daughtetr first started with PANDAS, Amoxicillin is what we used, several times. The strep was never erradicated and each PANDAS episode was worse. This can be avoided by using a macrolide or cephalopsporin. http://www.entrepreneur.com/tradejournals/.../169459644.html Colleen
  8. She is almost 13. She has had PANDAS since she was 5, but 3 days before she turned 11, she had an abrupt onset of severe intrusive thoughts which she had never experienced in the 6 years of PANDAS. At that time I started her on Inositol and 5 HTP, so I can't say for sure which one helped the most, but after a few days her intrusive thoughts were much better. After a course of antibiotics (at that point I don't think we had tried Azithromycin, so it was probably Keflex) they were completely gone. I am going to up her to 100mg of 5 HTP. YOur DAN said up to 200mg/day. She was recently weighed and weighs about 130 lb., so I unfortunately have not been giving her enough. Colleen
  9. Hi dee45, There are treatments for PANDAS and I am so sorry that your physician so quickly dismissed it. Can you give a history of your son and I assure you, people will comment and help you! Hang in there! have you started reading posts on the PANDAS forum? Colleen
  10. I started giving 5 HTP to my duaghter right before she turned 11. I give her 50mg/day. I have not noticed any side effects at all. It can make some people sleepy, so it may be best to give at night.
  11. My mom has horrible arthritis and it helps her more than anything else she has ever tried. Zyflamnd is marketed for arthritis/swollen joints. She swears by it!
  12. Thanks for posting this article! "Gerber said the so-called "rapid strep test" has now replaced throat cultures in the US, and the new statement has some particular advice on this. "It's unusual to get a false-positive rapid strep test," says Gerber, "so if you do this test and it's positive, you can be pretty confident the person has strep throat." But false negatives "are not uncommon," he says, and the new advice if the rapid strep test is negative differs depending upon the age of the patient. In a child, a negative rapid stress test "is now recommended to be confirmed by a throat culture," he says. But in adults, this is not necessary for two reasons. First, adults are much less likely to have strep throat, and second, initial attacks of rheumatic fever are rare in adults. Unfortunately, a lot of physicians are NOT following this guideline. When the rapid comes back negative they assume the child doesn't have strep and don't follow up with a culture. Finally, individuals who have had an attack of rheumatic fever are at very high risk of developing recurrences after subsequent GAS pharyngitis and need continuous antimicrobial prophylaxis to prevent such recurrences (secondary prevention), the AHA statement notes. If PANDAS is "rheumatic fever of the brain", then PANDAS children should be on prophylactic antibiotics and physicains should stop making us beg for them! Colleen
  13. That is very interesting. My mother has bad arthritis and has been taking Ziflamend for a few years with great results. It is a mix of herbs, including tumeric, that are anti inflammatories. If she forgets to take it she can feel it. My sisiter recently started giving it to her PANDAS daughter, especailly when her pupils are dilated. I am going to start giving it to my children to aid in decreasing inflammation from PANDAS. http://www.prohealth.com/zyflamend.htm Colleen
  14. The manufacturer of the white Zith we get is Sandoz(in NY) Colleen
  15. Red dye makes my kids hyper, but we had two bad experiences on it. When my son was five he was taking Keflex liquid with red dye and after a day on it he got more and more hyper, then started to act depressed- even said he wanted to die. It was 100% out of his character to act this way and I don't think it was strep related. When I started to suspect the red dye, I switched him to capsules (dumped the powder in liquid- it tasted horrible but pharmacist OK'd it), after a day he was completely back to normal. Another time my 4 yr old ate tons of icing with red dye and woke up screaming he saw spiders flying around the room. Red 40 seems to be the worst. Google red 40 and it is shocking how some children react to it. Colleen
  16. Yes. You can get a white pill and the pharmacist says it is fine to crush. My kids can't swallow pills, so I have been crushing it. i will try to find the name of the manufacturer, but you may want to call diferent pharmacies and just ask if thye can get the white pill. I had the best luck with small "neighborhood" pharmacies. My kids have horrible reactions to red dye.
  17. I wholeheartedly disagree with that doctor. A strep carrier has a positive throat culture, but does not show symptoms of an acute strep infection or show a rise in strep antibody levels. In my opinion, PANDAS children ARE strep carriers, but that carriage MUST be erradicated b/c it is NOT benign. My children never show physical signs of strep, nor elevated titers, so that would technically classify them as carriers. What they do show is the full range of behavioral symptoms (OCD, tics, anxiety, hyperactivity, etc..) when they get strep. I think that physicians who make those statements are basing it on what the standard has been prior to knowledge of PANDAS. It is not a coincidence that lots of our children do not have any physical symptoms with strep, nor elevated titers, but explode with psychiatric symptoms. To tell you to stop the antibiotics, in my opinion, is ridiculous. It sounds like your child responds to antibiotics, HAS positive streps, just doesn't react to strep in the ways that are "typical" for strep. Most people get really physically sick when they have strep, but PANDAS children get emotionally sick. I just don't get why these doctors cannot see the writing on the wall. The fact that your child has had 6 strep infections within 7 months is a major clue. Normal titers do not rule out PANDAS in any way and that is another falsehood that many physicians are telling parents. I do not believe that any strep carriage is benign, but most especially in a child with PANDAS. If your child responds to antibiotics i think it would be not doing the right thing to stop them. I have been there/ done that before with my daughter and things just got worse. Do you have a physician that will continue prescribing? Colleen
  18. http://www.entrepreneur.com/tradejournals/.../169459644.html This article has a good explanation as to why some children's strep is not erradicated by amoxicillin or penicillin. If the person's throat is colonized already with M. catarrhalis OR H. influenza (which are common pathogens in children) those people have a 10-fold increased likelihood of contracting strep. This would be a good article to explain to any physician who is not yet aware of this why they should be prescribing a cephalosporin or macrolide. SO many physicians refuse to accept this and continue prescribing the wrong antibiotics. Perhaps PANDAS children carry more of these 2 pathogens and that is WHY they get strep more easily AND it is not erradicated by Amox/Pen. With that said, I know that Amox/pen DO WORK in SOME people, but the majority of physicians INSIST they work in ALL cases of strep, and that is ABSOLUTELY false. "With coaggregation, the GAS bacteria acquire the ability to attach themselves to the M. catarrhalis or H. influenzae that already colonize the throat at various times during childhood and adulthood (H. influenzae is about 5-6 times more common than M. catarrhalis). While these two organisms have long been known to become pathogenic in certain settings, we are now realizing that they also may serve to enhance the attachment of GAS to throat cells. Indeed, coaggregation is a likely explanation for why some children--such as those more frequently colonized with M. catarrhalis or H. influenzae--are more vulnerable to strep throat than others. Moreover, it also explains our finding that an individual who is colonized with one of those two organisms and then is exposed to streptococcus has a 10-fold increased likelihood of developing strep throat. " Colleen
  19. This article was posted on a Yahoo OCD parenting site. I wanted to post it here b/c it has some interesting information about strep and it's role in rheumatic fever and autoimmune disorders. Colleen http://www.sciencedaily.com/releases/2009/...90302090634.htm
  20. Were you taking any supplements or vitamins or medications at home that you did not take while in San Diego? Maybe something you were taking before was triggering it??
  21. I give my children ( ages 3, 6, 8) Nordic Naturals Omega 3.6.9 Junior. Two 500 mg Soft Gels Contain: (total 1000 mg) EPA: 135 mg DHA: 90 mg Other Omega-3s: 58 mg GLA: 33 mg OA: 80 mg Vitamin E: 15 IU My suggestion would be to buy a "trusted" brand, such as Nordic Naturals b/c cheaper brands are not as pure, so they risk being contaminated with mercury from the fish. A good health food store would carry good brand. I think that Omegas are really good for kids in general. Colleen
  22. Kim, My PANDAS daughter has that right now on her arms- the "chicken skin" (keratosis pilaris) AND has had it for months. I could not figure out what it was, but it did not seem to bother her. Is this strep related?? Thanks! Colleen
  23. When my daughter was in the first year of PANDAS at age 5-6, she told me oe night that she kept seeing a red devil poking it's head around the corner. This scared me to death as I was a psych nurse at the time and I thought "is she psychotic?" She was able to tell me she knew it wasn't really there, but she was seeing it. That was the last time she ever mentioned seeing anything. One of my sons, the day after his 5th birthday, woke up in the middle of the night, absolutely terrified, saying he saw big grey spiders and gray masses flying around the room. This went on for hours. That was the last time, thank God, that has happened. I was convinced, and still am, that the trigger was red 40 dye. When I ordered his cake I asked them not to put any red dye b/c all of my kids have reacted to it, but they made the whole cake covered in black icing (a racetrack) which must have had red dye. He could have had strep at the time b/c it was in January and none of my kids were on prophylactic antibiotics at the time. Colleen
  24. Can you get your doctor to extend the Azithromycin? Sounds like the Keflex is not working, which happens sometimes with PANDAS children. You said the Azith has helped some, so you may just need to keep him on it longer. A lot of children need weeks of Azith to see a big change. The ASO of 506 is NOT a coincidence, as you know, and is pretty high. It blows my mind that they are so quick to prescribe psychiatric medications, but are SO stingy with antibiotics, EVEN in the cases of elevated strep titers and diagnosed PANDAS.
  25. No, But more than one doctor "assured" me that it is almost impossible for a child under the age of 2 to get strep, which is NOT TRUE. I know that my 3rd child had it before the age of two, but I am pretty sure, based on physical symptoms, my older children had it by age two, but FIRST culture was not until age 5 on my daughter.
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