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Everything posted by colleenrn

  1. What antibiotic is he on now and at what dose? This is really important right now b/c it sounds very likely to me that you are dealing with PANDAS and you have to treat strep infections aggressively. That is good that you are having some immunology bloodwork done. If you do bloodwork, you may want to add in a test for mycoplasma pneumonia and do strep titers to get a baseline (ASO, ADB). Colleen
  2. A little vent here. If anyone should be knowlegable about PANDAS it is a pediatric ENT. I mean, who is in a position to diagnose PANDAS? Who sees a lot of children with undiagnosed PANDAS? Probably psychiatrists and pediatric ENT's have a lot of PANDAS children come to them for help, so would it not be critical for those physicians to know what they are talking about in regards to it? I feel our ENT is a good surgeon and that is very important, but I am sorely disappointed with what she knows about PANDAS. She likes to lecture about how controversial it is, but I am so glad to know that we are done with antibiotics (very snark comment). When I explained to her that now the goal is to prevent any further strep, she looked at me like I was a space alien. She replied with a very annoyed look, "well, that is not how we (meaning all ENT's, not just her) treat these children, but if you are working with some PANDAS doctor who does it that way, well..." I told her it was very similiar to rheumatic fever and in the future it will be, she cut me off and stood to leave. Glad that part is over, but unfortunately my 4 year old is going to need a T&A in the near future. I will go with her b/c she is an excellent surgeon, but I plan on dropping off a load of PANDAS articles for her to hopefully read. Colleen
  3. Sarahjane- There was an MD named Kyle who worked with Dr. Leckman. Wonder if that is him (PANDAS article author- Kyle Williams). Does anyone have any idea when the white paper is coming out and any idea if it will call for antibiotics? I hope so. Colleen
  4. Can you call your dr's office and ask for the specific results- what are the ASO and the ADB values? Some labs set the upper limit on ASO at 200 and some set it at 400. Years ago during an exacerbation, my dr told me my son's titers were "normal", but when I showed them to my current dr, she said "OH, his strep titers were high". His ASO was 396, but the nurse said it was "normal" b/c it was below 400. An ASO of 396 is not normal in a child. So, he went untreated for a while and al of my kids got worse. Even if all of yout titers are zero, your child could most definitely still have PANDAS. When she was a "diferenent child" on zithromax, how long was she on it? Maybe it was working, but she was not on it long enough. Putting someone, anyone, on only 5 days of zithromax is usually not long enough for most infections. Colleen
  5. 1. I would say it depends on which antibiotic and dose and weight of child. If it is amoxicillin or penicillin, I would say 4 weeks + on those antibiotics and your child could still have a strep infection. Four weeks on a high enough dose of zithromax or possibly something like Omnicef and it may have erradicated the infection, but the antibodies are still in play causing symptoms. Two of my children are on full strength zithromax AND augmentin right now and they are still no where near their baseline. In their cases, I think it is that the antboidies are still causing their symptoms and/or they keep getting exposed to strep at school. I have been told that pupil dilation is indicative of inflammation in the brain. My 4 children have dilated pupilis that come and go, but they are extremely dilated when they are. None of my children have had IVIG yet, so I cannot help there. Hope this made sense. Colleen
  6. I think it could mean that you are a carrier. My ASO was 396 and my streptozyme was 400, (but ADB was normal) this summer and I treated myself with a month of zithromax. With your ASO being 800, you may want to use a high dose of Augmentin or a longer course of zithromax, then wait and retest. I am going to have mine retested soon. I have not had a sore throat or any symptoms. I wonder if my kids exposing me to so many years of strep has made me a carrier. Not sure. Colleen
  7. Was your son tested for c-diff? Clostridium difficile can be caused by antibiotics and has similiar symptoms. It is treated with flagyl. How long are they thinking he would need antibiotics? Can you try giving them through just a peripheral line that is not a central line? That would be much less invasive. Colleen
  8. I also have been very confused about band 41. I did a western blot through Quest labs this summer on all four of my children. All results appeared normal except for my 9 year old son. His band 41 was "reactive". Dr. Trifiletti (who ordered the tests) admittted he is not a LLMD at all, but tells me not to worry about band 41 being reactive. Of course, i am worried as we live in a tick area and 3 of our neighbors have Lyme disease. I have read all the posts on here and tend to lean towards more testing. I am confused though... Colleen
  9. Chances are he is a carrier b/c his tonsils and/or adenoids are harboring strep. My son just had a T and A 5 days ago. he had been on zithromax for 2 years and our ENT said they did not look bad when she examined him, but agreed to remove them based on PANDAS, based on that it helped his brother and sister when they had theirs out, and I said he snored (does not that often, but I knew that would help to make my case). After surgery, our ENT said they were very scarred and she coulod tell they had been infected repeatedly. This is common- the dr says they don't look bad until they get them out. Some ENT's are more apt to remove them and some ENT's insist on a certain # of infections. If you are working with Dr. T, tell them your PANDAS dr suggests removing them or have him contact your ENT. Good luck. I think most children with PANDAS would benefit from a T and A. Colleen
  10. My son had a T & A on Monday, so today is day #3. He woke up with 102.2 temp and I just talked to his ENT who is not at all concerned. He was tic free for the first two days, now they are back, plus the fever and labile behavior. He has been on daily zithromax for a long time prior to surgery, but has had no zithromax since Sunday. He is on Augmentin 400mg/ twic per day and the ENT thinks that is enough. She is aware of PANDAS, but really cluless about it. She said right before the surgery on Monday, "won't it be great that he will never need antibiotics after his tonsils are out?" IF, oh IF, it were that simple. Did anyone's child run a higher fever? A low grade fever is normal, but I do not think it should be above 101.5. Anyone? TIA. Colleen
  11. Two of my children had their tonsils and adenoids out and it did help their PANDAS. My oldest was completely symptom free for 1 1/2 years. My third child is having his removed tomorrow and I am so worried. I think I have picked the worst time in two years to do surgery b/c he has recently developed tics that he has never had before. I should have done it this summer when his exposure to strep was lower b/c everyone (it seems) has strep at his school. He is currently on zithromax and augmentin. I will post results on how it helps him. I pray his tics disappear. He also woke up this morning with really dark circles under his eyes. I am so afraid that even on the two antibiotics that the surgery will cause an flareup, or worse, release strep into his bloodstream. OK, yes, I am freaking out. I hate having my children undergo surgery, but I know he needs it. Colleen
  12. Zithromax is a good antibiotic to treat mycoplasma pneumonia, but that dose was low and only for 5 days. I think she should have had a larger dose for a longer time, so still having mycoplasma is very possible I think. The Augmentin she was on later in the summer would not have treated the mycoplasma. Dr. T definitely knows all about treating mycoplasma pneumo in PANDAS kids and would most likely call you in (after a phone consult with him) zithromax or Biaxin (very similiar to zith but more anti-inflammatory properties). You can do titers for mycoplasma pneumonia- I think IgA and IgG to see if it is a current infection or an old. Colleen
  13. That actually sounds like it could be impetigo, which is caused by strep or staph. Colleen
  14. The initial episode is usually from strep, but so many children have "illnessses" that are really strep, but either they are not tested, or they just have a negative culture (sometimes culture not done properly, or not run for long enough OR the strep is elsewhere in the body such as sinuses, gut, perianal area). Subsequent episodes can be from strep or any bacteria and also viruses. The rash on his bottom was most likely a perianal strep rash. Can you descibe what it looked like? Some children respond well to amoxicillin, but others do not respond at all (like my kids). Colleen
  15. It is very possible for a person to have strep, but still get a negative throat culture. Strep can be in other places (sinuses, gut, perianal area, ear). Colleen
  16. Hi. I just wanted to make sure that you are aware of PANDAS and have ruled that out as a cause of your child's tics. Unfortunately, many many physicians are not aware of PANDAS so they do not treat for it. My daughter developed tics at age 5 and we thought it may be Tourette's, BUT it was not. It was PANDAS, triggered by a strep infection. Has your child had any illnesses that correspoind with developing tics? Colleen
  17. My oldest child had all the vaccines except for the last DTP that was due at age 5. She has the most severe PANDAS by far as compared to her 3 siblings. My 3 yongest have only had IPV (polio) and I strongly believe that is why their PANDAS is less severe (at this point) than my daughter. I know that there are some deaths with pertussis, but if you really look into who the children are who have died, they usually have other complex health problems. My 3 youngest all had pertussis and chicken pox a few years ago. Yes, I was scared to death when they were sick, but they made it through fine. I am still more afraid of vaccines. It is intersting that Dr. C says yes to flu shot and Dr. T and Dr. K say No. Colleen
  18. My son's T & A is this Monday and he has developed an eye blinking tic that has gotten worse all week. He is 7 and started showing signs of PANDAS around age 3-4, but he has never had tics until about 2 months ago when he developed a tic where he rubs his hand on his nose and mouth (thus rubbing in any and every germ that is in his school...). This week the eye blinking started. he has been on daily zithromax for TWO years and we added Augmentin 400mg/ twice per day last week. I am scared enough to have to go through surgery for him, but now I am terrrified that he has strep somethere and it will be released in his blood stream during surgery. My ENT will not give IV or injects of antibiotics. I guess my question is, did anyone's child develop tics right before surgery and were they OK after surgery. TIA. Colleen
  19. Yes, that is a pretty low dose for her weight. Our pediatric dentist offered my 8 year old xanax .25 mg prior to a tooth extraction and he only weighed 70 #. Colleen
  20. Blessed- Do you know how long they let the throat culture grow out? That is one reason why tests come back negative. Some labs only run it for 24-48 hours and it needs to be run for 72 hours. I have even known labs to read it at only 24 hrs. and throw it in the trash. IF that is the case, maybe they can reculture and allow it to grow out 72 hours. My kids have had strep based on their PANDAS symptoms with a unmistakable strep rash and still tested negative on the throat culture. There are so many other places that strep can reside besides the throat (sinuses, gut, perianal area). We did a phone consult with Dr. T and he has been helping us. We have not consulted with other PANDAS drs yet, but will if we need to. Good luck and hang in there. Colleen
  21. I would LOVE to have his contact info!!!! Thanks so much! I will clear my box so you can send. His T & A is this Monday, so I would have to act fast. Colleen
  22. Can you post your daughter's weight and the dose of xanax? Colleen
  23. None of my 4 children experienced that. Colleen
  24. Eljomom- I did a phone consult in June with Dr. T and we did a lot of blood work. If you don't want to wait until Dec. to see Dr. L, you could do a phone consult with him almost immediately. He is a pediatric neurologist in NJ. I have heard wonderful things about Dr. L too. I would just be concerned to not have antibiotics for that long. Colleen
  25. My 9 yo son came home today saying his right eye has been twitching all day long. He just went to the dentist yesterday and his lips bled a lot when they were cleaning his teeth. I am just wondering if anyone's child has exerienced eye spasms as a PANDAS symptom or when they have strep. We had have bad luck after dentist visits. TIA. Colleen
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