colleenrn

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.

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!

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

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

The manufacturer of the white Zith we get is Sandoz(in NY) Colleen

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

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.

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

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

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

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??

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

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

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

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.

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.

Two of my four children have had a tonsillectomy and adenoidectomy, with good results. My 12 1/2 year old daughter had a T & A just after she turned 6 (her PANDAS symptoms abruptly began just after she turned 5). After about 9 months of repeated strep (whenever she stopped antibiotics) I started to pursue whether or not to get the T & A. I had seen Dr. Swedo and her partner at the time, Lisa Snyder, a few months prior. At the time they did not encourage a T & A, and that summer I called and talked with Dr. Snyder, who tried her best to talk me out of getting it. I am a nurse and I could NOT understand why they were so adamant about not doing it. My pediatric ENT, based on # of strep infections and by seeing her large tonsils, agreed it was warranted. When he removed them, he commented that they were the size of a large male and no amount of antibiotics could have gotten into the crypts and pits in her tonsils. Post T & A, she was symptom free/strep free for a solid 18 months, at which time she woke up one morning with the tics and OCD back. NO physical symptoms, neg rapid, culture grew positive and my doctor wqas floored b/c he did not think she had strep based on no physical symptoms. That was 4-5 years ago. We have ups and downs. I am confident it was the right decision. I feel I made a HUGE MISTAKE by not doing antibiotics prophylactically afetr the T and A. At the time, I did not know what I know now and would never have left her off antibiotics. I had my second child evaluated by the same ENT b/c starting around age 2-3, he snored a lot and whenever he was sick, especially with strep, he had sleep apnea. The sleep apnea worsened as his strep infections were more frequent. Just after turning 5 he had a T & A. Again, the doc said his tonsils were huge and very cryptic. I think he has faired better for 2 reasons: 1. he is not vaccinated except fort polio and 2. he had his tonsils and adenoids removed sooner than his siter. My 3rd child has large tonsils, no sleep apnea, but snoring getting worse. His strep started prior to age two. It is my plan, soon, to have him evaluated b/c he also has huge tonsils. I am not suggesting that all PANDAS children have T & A's BUT if your child has a similiar situation to mine, it is something to seriously consider. When the tonsils are cryptic (full of holes and pits), the antibiotics get rid of enough strep, but not all. When you stop the antibiotic, the little bit of strep that is left just recolonizes, causuing another infection. At the time, we never tried Zithromax, which is much better at penetrating through to the strep. Prior to the T and A, Amoxicillin, penicillin, Augmentin and Keflex stopped working. Out of desparation i begged to put her on Clindamycin, which helped, but even with that, I could see the strep stuff coming back. This is why I believe that Amoxicillin, penicillin are not the right choices for PANDAS kids, b/c it does not penetrate through to the strep. Strep can also hide in the adenoids, which are very hard to culture. I would start by going to a pediatric ENT and having an evaluation. Please let me know if I can answer any questions about my children's T and A. Good luck! Colleen

guy123- I had a chemistry professor in college who was srtudying the effects of alum, especially in deoderants. He told our class that IF we knew what he knew, we would never use "regular" deoderant again. You can get it without alum, like in Tom's of Maine deoderant. Colleen

Michele, I can't help with info on school services, but I wanted to comment that my children do not act at school like they act at home. Even when my daughter's tics are at their worst, she some how keeps them to a minimum at school, then lets loose at home. My two boys who are hyper, emotional, throwing fits, not paying attention, etc... at home, behave perfectly at school. People always comment when I tell them my kids have PANDAS, "gosh, I would have never known that by watching them" Colleen

dcmom, What antibiotic is your daughter taking daily? Thanks! Colleen

Yes, IMO, it could be PANDAS. My daughter was diagnosed at age 5 with PANDAS, BUT looking back, I now realize I saw some symptoms as early as 2-3. My now 8 yo, I saw symptoms around age 4. My 6 yo, I saw symptoms around age 3, AND my 2 1/2 yo, I have seen signs since he was 2. Had my 1st child NOT been diagnosed with PANDAS, I would not know that was what was going on with my other three kids. It sounds like your daughter's symptoms all worsened in Oct 08? It could be that she was exposed to strep at that time. A lot of PANDAS kids do not have any physical symptoms, so they don't get tested for strep b/c it does not seem like they have it, when they really do. It is often that the parents DO know more about this than the physicians b/c a lot of physicians don't even know PANDAS exists. I would start with a throat culture (and ask them to grow it out for 72 hrs.) and then go from there. There is a wealth of info on this forum about pANDAS and lots of parents ready to help new parents. Hang in there! Colleen

What is the best dose of Omegas for children in treating ADD/ADHD? I know that I have read it must be a higher dose than what the "normal" supplement dose is, but I can't find out a dose. Thanks! Colleen

When I say NOT a rapid strep test, I mean to say don't ever just rely on that. It's fine to do a rapid, but a lot of physicians do not follow up with a culture when the rapid comes back negative, so a lot of people are walking around with strep b/c it goes untreated. Colleen

I agree 100% with EAMom's post about getting a throat culture (NOT rapid) ASAP. Did any of your physicians even mention this as a possibility. It should be standard protocol with ANY child's onset of tics or OCD or anxiety to do a culture and the fact that so many doctors overlook this is scary! Good luck! Colleen

I would suggest trying to get in touch with Dr. Susan Swedo at NIMH. She is a very caring doctor who saw my daughter in 2002 and who very promptly answered a recent email I sent her. She will know who specializes in PANDAS in this area. She is in Maryland. The fact that you saw a dramatic change in your daughter with the Amoxicillin points towards PANDAS,in my opinion. It seems like the combo of Augmentin and Zithromax should be doing the trick, but this is such a tricky disorder, that I wonder if, given the initial response to Amoxicillin, would a trial of Clindamycin be warranted. Prior to removing my daughter's adenoids and tonsils, she went through a list of antibiotics. The three months prior to the surgery, each antibiotic she was taking stopped working. I asked my doctor, who complied, to put her on Clindamycin. Within a day, her symptoms were cut in half, after a week, she was back to "normal". Once she had her tonsils and adenoids removed and the ENT said they were so large and cryptic (full of holes/pits) it was evident that no matter what antibiotic or dose of antibiotic, the strep was "hiding" in the crypts and would recolonize whenever she did not have enough antibiotic. Do you know if your daughter has large tonsils or cryptic tonsils? I am not suggesting all PANDAS children get a tonsillectomy/adenoidectomy, but in my daughter's case it was very helpful. Just thinking out loud, trying to put every possibility out there, b/c PANDAS is SO confusing/tricky/hard to get a handle on! Good luck! Colleen