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Everything posted by colleenrn

  1. Nice to see yo here too, or not, too. My kids are doing sorta OK with flareups here and there. The boys are mostly adhd type symptoms and irrtitability with occasional minor tics also. It is my oldest (14 year old daughter)who has the ocd/anxiety/tics/fear symptoms who is in a flareup now. My oldest 3 have been on 2 years of daily zithromax 250mg and doing much better than 2 years ago. The 3 oldest had T & A, and the youngest will most likely oinnext year. He is on daily augmentin 250mg BID since May. he was very very sick in May and it all started with strep. Before May, he had strep multiple times. Since daily Augmentin he has been much bettter- still flareups, but bettter than without Augmentin. My 14 year old was not doing well on only daily zithromax and responded to about 40 days of Augmentin xr 1000mg BID (Saving Sammy dose). Two weeks after discontinuing the aug xr but stilll on daily zithromax, she decompensated. Today we put her back on the aug XR 1000mg BID and see what happens. We will most likely wait a week and if not good results, do a month long steroid taper. She had good results this summer when we did a five day steroid burst. On a scale from 1-10 with 10 the worst, she is an 8, which is bad for her. I am just going to give you my unsolicited advise on zithromax. I think perhaps your daugher has an active strep infection now due to only 5 days on zith and only QD augmentin. This has happened with my children. If it were me, I would get her on a daily good dose of zithromax for an extended time- at least 3-4 weeks. It can take that long, at a treatment dose, to get to the strep. If it is intracellular right now, the augmentin will not take care of it. Yo could present it to your physycican that you want to try this based on other PANDAS kid's experiences and also you want to try that before going to any neuroleptics. How much does she weigh? I ask this b/c even though the "standard" dose of zith is 250, that is not always enough depending on their weight. My daughter has responded very well in the past during a flareup when she has been exposed to strep-not sure if she had it but think so, to an increased dose of 750mg of zithromax for a week. Good luck. thinking of you. Colleen
  2. Browneyesmom- Have you tried her on zithromax? If the strep is intracellular, Augmentin may not be able to reach it. In the worst of flareups in my kids, putting them on both zithromax and augmentin has helped. Could you add zithromax in for a few weeks along with the augmentin and see if that helps? Have you tried steroids to decrease the inflammation? Can you get an EEG on her and seee if there is any seizure activity? I am sorry for what you are going through. Hang in there. Colleen
  3. My oldest had all of the scheduled vaccines until he age of 5. My next three children had only two of the polio vaccines and not until they were much older. I firmly beleive my oldest has a much more severe case of PANDAS b/c of all the vaccines, OR maybe my other three kids have a milder form b/c they did not get vaccines. Not sure, but I think it played a part in it. Colleen
  4. It is scary that these ID docs see strep and so black and white. It is what is being taught in medical and nursing schools and it is not correct. There is SO much education about strep (even minus PANDAS)that needs to happen. These docs need to be taught what we parents have figured out for ourselves. That you don't always get elevated titers. That penicillin does not aleways kill strep. That longer courses of antbiotics are needed. And that strep is not just in the throat. I honestly think there are docs out there that think you can't get strep once your tonsils are out and that a negative throat culture means the entire body is strep free. I am not doctor bashing, just venting. Colleen
  5. Just keep in mind they only test for strep A and if you get a negative result, it can still be positive on a culture. I think they are great to have if you get a positive result though. I have never bought them, but I am going to order some. My kids tend to always have negative rapid tests though. Colleen
  6. Kara- Yes. Ask them to do a rapid test and a 72 hour culture (insist they grow it for 72 hours). Make sure the nurse gets a really good sample, swabbing both tonsils. Colleen
  7. How much augmentin and zithromax was he on? How much does he weigh? Another antibiotic that seems to work well is Omnicef. If it was my child I would most likely give them the highest dose possible of zithromax for a full 2 weeks and see if they improved. Those behaviors are very suspicious of PANDAS or PITANDS. Colleen
  8. I would have them do a 72 hour culture on both children also. Is it your PANDASD son or your 11 year old that Dr. B thinks is a carrier? Colleen
  9. Yes. you absolutely can have strep with a negative throat culture, for a variety of reasons. I will list all of the reasons I can think of and if I miss any, someone else will most likely chime in. Never rely on a negative rapid throat culture. Many times the rapid test comes back negative, but the cultures returns positive. 1. The person doing the swab does not swab both tonsils. In up to 20% of the time one tonsil will test negative while the other tests positive (studies have shown this). If the nurse/dr only swabs one tonsil, yo can get a false negative. Both tonsils and the sides of the throat should be vigorously swabbed. This can be hard to do in some children. 2. The culture is not allowed to grow out for a full 72 hours. Growing it out for only 24-36 or even 48 hours is not long enough. 3. When the swab arrrives at the lab they are supposed to pierce the agar with it. If this is not done you could get a false negative. Alllabs should be doing this, but it is something worth verifying. 4. Strep is elsewhere in the body. It can be in the nose, sinuses, ears, gut, perianal area, skin. A thoat culture would not detect this. A stool test cn be done to check for strep in the gut. Ct scans or xrays are sometimes done to look for strep in the sinuses. There have beeen several times over the past 10 years that y children had strep yet had a negative culture. They had scarltinaform rashes with huge flareups in PANDAS symptoms that resovled with antibiotics. I think the % of people who do not have increased strep titers is 37%, so negative strep titers mean nothing. Only one of my four children have had any elevated strep titers. There is a blood test done by Dr. Madeleine Cunninghaam that may be something you should consider. It tests for special antibodies in the brain that indicates PANDAS. Another thing you may try is to have yopur physician give you a 30 day trial of antibiotics and observe for changes. Colleen
  10. Yes it could be strep, but it would most likely errupt if it were. I guess though b/c he is on antibiotics, that it may not errupt. I have not seen impetigo that looks like a hive. To test it they take a swab (same as the one for throat swab) and rub it on the affected area. They then culture it out. Colleen
  11. Hi Warrior Mom, My children do not have autism, but all four of them have PANDAS. All four of my children have experienced all of the same symptoms as your son, minus seizures. The difficulty falling alseep and sleeping alone, frequent urination, multiple strep infections, ADHD behaviors,deep voice, and constiption have occured in all of my children. Have you ever posted on the PANDAS forum. There are a few children that have autism and PANDAS. The really bad reactions to the vaccines is also common in children with PANDAS. Has your child ever been on antibiotics for an extended time and you have seen any improvements in his behavior? I am just trying to help and I don't have all the answers, but it sounds extremely supicious to me that there could be some infectious process going on that could be playing anywhere from a small part in his autism to a huge part in it. When was the laasrt time of a known strep infection in him? And the tricky part with knowing when they have strep infections is that so many times the child has strep, but does not have "typical" strep symptoms so they don't get tested. Colleen Colleen
  12. Can you describe what the rash looks like and where it is in his groin? Is it really red aroung his anus? Do you see little triny red spots or it is just red all over? Yes, my children have had scarlet fever rashes and perianal strep with no fevr whatsoever. Colleen
  13. I would think that the mucosal thickening was caused by an infection and if that infection was strep, then i would think that could cause ther PANDAS symptoms for sure. Colleen
  14. Yes, yes, yes! All of my four children get dilated pupils, sometimes so large yo can barely see their iris. My understanding is that it indicates brain inflamation. Ibuprofen and steroids can help decrease inflammation, as well as some antibiotics. Colleen
  15. Yes, it is possible,just like it is possible to get strep on antibiotics. What antibiotic is your child on and what dose? Maybe the antibiotic needs to be switched to a different antibiotic. Colleen
  16. Have you had a throat culture or strep titers on you? My experience is that if you have cryptic tonsils, the tonsils are most likely harboring strep and you could be a carrier. It is extremely hard for a lot of antibiotics to erradicate strep in cryptic tonsils. When did you have strep last and what antibiotic were you on? Based onthe strep titers and Lyme, if it were one of my children, i would most likely go with the LLMD and start vanco. OR have you tried zithromax? Colleen
  17. I have not seen any changes in my 14 yo daughter that I can pinpoint to when she got her braces. She has had them for 2 years and will most likely have them another 2 years. I do see changes after dental cleanings, so I either increase her antibiotics the day before cleanings or I add another antibiotic for 2 days. Colleen
  18. EAmom- That is my biggest fear and has been all along. My oldest was diagnosed by Dr.Swedo 9 1/2 years ago. I emailed Dr. Swedo almost two years ago and asked her WHEN the NIMH was going to update their website as to the need for antibiotics. I told her docs were handing out psych meds like candy, but refusing antibiotics. She agreed and said that they were "in the process" of updating the NIMH site and I got the impression that the need for antibiotics would be included. IF this white paper comes out discouraging antibiotic use, I feel we are going to suffer. Everytime I get really excited about a new PANDAS article that I can print and show to physicians (including the recent Leckman/Murphy article) I find that they all discourage the use of antibiotics. I want to know from all of these physicians, how would they treat their own child if that child had a history of rheumatic fever. How they would treat their own child, not a patient, is most likely with longterm antibiotics. It has been proven for a long time that you do not just wait to see if a child with rheumatic fever happens to contract strep. It seems so simple. I think the push to minimize any use of antibiotics to prevent "super bugs" needs to be closely watched. I fear we will get to the point where it will be near impossible to get them if it continues the way it has been, not just with PANDAS, but with Lyme, etc... I just don't want to panic every few months, trying to figure out how I will get antibiotics for all of my children. All four have proven over and over that they regress without them. Colleen
  19. That stinks. How much Augmentin was she on? I have one child on Augmentin right now, but I am geting suspiciuous that he may have strep b/c of his behavior. He is only 4 so it is really hard to figure out. Colleen
  20. Yes, sounds like PANDAS. There are many places where strep can hide (sinuses, ears, nose, gut, perianal area) that would not show up on a throat culture. Colleen
  21. Thanking you for sharing what Dr. K had to say! I have been waiting and wondering when we will see the white paper and praying it calls for antibiotics. I know all children are different and none of my children have had IVIG, but they need antibiotics and it scares me to my core to think of what would happen without them. I have done the wait and see with my oldest and it was not good. She had a major excacerbation when she was 11 (6 years into her PANDAS)b/c we decided to stop antibiotics and see what happened. It is 3 1/2 years later and she has never returned to her baseline. I am never willing to do it again and will find antibiotics from someone. I know Dr. K is a wonderful and skilled physician, but I honestly have never understood his stance on antibiotics. I am not saying he is wrong, but it does not make sense to me. PANDAS is rheumatic fever of the brain and requires the prevention of strep in that person. It seems like other PANDAS physicians (Dr. T, Dr. L, Dr. Murphy) are all more aggressive with antibiotics and I wish they had input into the white paper. I just feel like it this white paper comes out and discourages the use of antibiotics, we may have an even harder time getting them. Colleen
  22. It absolutely sounds like it could be PANDAS. Has she been on any antibiotics? If not, I would strongly suggest that somehow she gets on antibiotics. Only one of my 4 kids has ever had an elevated strep titer and they have had strep many times. Hopefully Dr. T will get back to you b/c he can call in a Rx for antibiotics for you. Colleen
  23. Good luck today. I am thinking of you. Try to get the antibiotics in yor boys today (all doese if possible) b/c I would be concerned about them waiting until the next day to begin in case there was any strep released. Let us know how it goes. Colleen
  24. I am going to tell you what I would do in your situation, but I am only giving my opinion. Is your PANDAS son currently on antibiotics (if so what antibiotic and dose)? Given his strep titers, I would treat with a full strength course of antibiotics for an extended time, then eventually switch to a prophylactic dose. Are your two sons getting the T&A on antibiotics now? I would not do a T&A without them being on full strength antibiotics for at least a week prior to surgery. Both of their titers are elevated and the risk is that strep is in the tonsils and/or adenoids and will be released during surgery. The goal is to erradicate the strep as much as possible before surgery and to continue on antibiotics after surgery, if only for 7-10 days. My ENT does not use IV antibiotics or a shot of antibiotics during surgery, but many ENT's do and insist it is very necesary. My nephew's ENT gave him a shot of bacillin during surgery. I also, in your situation, do not think it is overkill at all for you and your husband to take a course of antibiotics IF you can get yor physician to go along with it. Your ASO, IMO, is a little elevated and the ADB too. Some people's titers do not rise with strep, so you cannot rule out that your husband doesn't carry strep. I know surgery is so stressful and trying to figure out this very tricky disorder makes it even more stressful. My two older children had a T&A several years ago, but my 7 year old son just had one a few weeks ago. As far as what to culture/biopsy/test in the tonsils and adenoids post surgery, my nephew's ENT did a bacterial smear and also a culture. My ENT gave me such a hard time about it and she never received a letter from a PANDAS dr I have been working with instructing her to test post surgery, that I gave up. Hang in there! Colleen
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