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colleenrn

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Everything posted by colleenrn

  1. Thanks for everyones responses. I decided to stop giving him the Zithromax a few days ago and will restart it in a week or so. He is doing really well so far and it seems like a fairly mild case. i am more worried about the upcoming weeks as my 2 and 5 year olds get it b/c i have read that the first sibling that contracts chicken pox has a milder case and the siblings being exposed all day/everyday get a worse case. Anyone experienced that? So far I have not seen an increase in PANDAS stuff. Colleen
  2. Thank you for all your responses. I remember something about antibiotics making chicken pox worse or somehow negatively affecting someone with chickenpox. I could only find limited info, but it looks like antibiotics can increase the chances of a secondary infection when a child has chicken pox. He has been on Zithromax for about 1 1/2 months. He last week switched from 250mg/day to 125mg/day. I do not know if I should stop the antibiotics if they will indeed make the chicken pox worse. OR should I be more concerned about him getting strep in I stop the antibiotics. I am not sure what to do.
  3. My 7 yo PANDAS son was diagnosed with chicken pox this morning. I am anticipating my 2 and 5 yo will also get it. I was wondering if anyone's PANDAs child has had chicken pox, and if so, did they have a big flare up of PANDAS symptoms? My daughter had shingles two years ago when she was 10 and I did see an increase in tics, but not a huge increase. I am wondering what to expect and I am very concerned and worried about him. He is now on Zithromax 125 mg per day. I am afraid his pox will get infected with strep and the complications that could arise from that. Thanks in advance for any info or input! Colleen
  4. On the subject of different strains of strep, I earlier posted about us recently testing positive for Group B strep in respiratory culture and beta strep, non A,B,C,F, or G. This has also happened in the past where we culture positive for non A strep, but the lab reports they don't know what strain. I have always wondered if we have a certain strain of strep that doesn't register positive in our cultures. Years ago when I took my daughter to meet with Dr. Swedo at NIMH (2001)and she instructed me to always insist on 72 hr. cultures b/c it can take that long to register positive in PANDAS kids, I asked her if she thought it was b/c they got a different type of strep. She smiled and nodded her head, which I took to mean she thought so. This has always made me wonder if my kids are picking up some different strain. Colleen
  5. I have often wondered if Zithromax is best for the first few weeks at getting rid of intracellular strep, then switching to a cephalosporin or Augmentin that actually kills the strep. Not sure.
  6. I know some of us have more than one child with PANDAS. I know 3 of my four do, not sure about my toddler yet. What I was wondering is does anyones children have cousins with PANDAS? It looks like my 8 year old niece has PANDAS. Thanks, Colleen
  7. Lacie, I know exactly what you are saying. It is so overwhelming. Colleen
  8. MyRose, How old is your daughter? They only recently added the second chicken pox shot, as a booster. I think it was just last year that they changed it. This link has the current recommendations. http://www.systoc.com/newscomments/news/Ju...7/Varicella.asp My daughter received it in 1997, but I have not, nor will I, give it to my other 3 children. My daughter had a horrible case of shingles when she was ten, which I found out later can be common in kids who get the vaccine. Wish I knew then what I know now. Colleen
  9. Just wanted tho thatk everyone for all your responses! I really appreciate it! Colleen
  10. She has not begun menstruating, but is definitely developed and I expect her period anytime now. I am also going to have to consider it for my 5 and 7 year old. I knew they had strep a lot when they were young, but just finished combing over my calendars from the past 6 years and was shocked to see how many times my 5 year old had strep, beginning when he was under two years old. He is the one I am most concerned about. He became extremely hyper and labile around the same time of his strep episodes beginning and I thought it was just his personality. Even though I knew my oldest had PANDAS, I just never considerd it could be occurring in my toddler and now I figure he went the longest with untreated strep.
  11. I have read that IVIG works best if done before a child turns 10 . Does anyone have experience with an older child going through IVIG? I am wondering if it would be too late to consider IVIG for my daughter. She is 12 and has had PANDAS since age 5. Thanks, Colleen
  12. EAMom, Have you ever gotten a negative culture on your daughter when you thought she had strep? Or is it just her titers that are not elevated? I have at different times gotten positive cultures on all 4 of my kids (NEVER the rapid ones though), but more and more the past few years their cultures come back negative BUT they respond to antibiotics. They are now on day 11 of Zith and doing somewhat better. One thing (and there are many, many things) that I am worried about now is the dose for my 2 oldest kids. Everywhere I read it says 12mg/kg/day is the optimal treatment dose. That would mean my daughter should be taking 500mg and my son about 350 mg. They are both only taking 250mg. When you were giving your daughter a treatment dose was it still just 250 mg? My sister's 8 yo daughter is in the process of being diagnosed PANDAS and her dr said a treatment dose for her would be 500mg/day for 5 days. Any light you or anyone could shed on these questions would be so appreciated! Thanks, Colleen
  13. Erica, The antiDNase B may still be elevated, but if he has untreated strep, the ASO may also be up. I am so confused b/c my 5 yo is responding to Zithromax, but his culture was negative and his ASO 106, antiDNase B 1:170, but he had all his usual PANDAS symptoms.
  14. Michele, I would think that I would get a 72 hour throat culture as soon as I saw symptoms, if that was negative do titers. Do you know why they are using Erythromycin instead of Zithromax? They are both macrolides, but curious if they think E-mycin is better.
  15. I was wondering if anyone using Zithromax has seen a great improvement while using it, then stopped using it, and when you restarted the Zithromax it did not seem to work as well. I think I have seen a slight improvement in my 5 yr. old in the past two days, but when we used it last month, it was an immediate improvement. Can anyone comment on whether Beta strep, non A OR Group B strep, would cause a rise in titers? OR is it just strep A that would raise titers? Thanks, Colleen
  16. When we used Zithromax back in October, I saw results within 4 days- dark circles gone, tics about 50% gone, much less irritable. This time I am not seeing such a good response. My 7 yo has completely stopped ticcing, my 2 yo is crying less often, and my 12 yo is ticcing less, BUT my 5 yo, the one I am the most concerned about, still has the dark circles and tics. Could I have set him up for being resistant to the Zithromax b/c I gave it to him for 15 days, stopped for 12 days, and then restarted? Does anyone know if Group B strep can cause a scarlatinaform rash?? I know it is supposed to be caused by strep A, but after 2 days on the Zith, the rash was completely gone. That makes me wonder if the lab could have read the culture incorrectly and he has Beta strep and not Group B. The lab my dr's office uses is notorious for messing up. Can anyone comment on the anti DNase B in my 5 yo being 1:170? I know it is best to compare titers to previous titers and that they say 1:170 is normal in school aged children, but what if he had been only one higher and instead of 1:170 it was 1:171? Then would it be considered elevated? This is so frustrating. I am trying to figure this out on my own as my doctor does not know what to make of it and my head is spinning. Thank you to anyone who may be able to comment. Colleen
  17. Dut, Thanks for your response. What antibiotic did you use for the Group B strep and beta hemolytic, non A? We are using Zithromax, but now I'm not sure if that is what we should be on.
  18. I am sorry. I double posted and can not figure out how to delete one of the posts. Sorry! Colleen
  19. Hi All, I recently posted about my children and just got the test results. I am very confused about the results and wondered if anyone has input or has experienced any of the same results. To quickly recap our situation, I recently saw a behavior change (irritability, hyperactivity, oppositional behavior, very emotional, crying easily) as well as dark circles under the eyes of my 5 and 7 yr. old boys (not "formally" diagnosed with PANDAS, but based on the similiarity to my diagnosed PANDAS child, I know they are PANDAS also). In addition, my 12 yr. old (PANDAS)had an increase in tics and my 2 yr. old has screamed, cried and thrown fits MUCH more often than normal. On Oct. 3rd I had the 5 and 7 yr. old cultured, results came back negative. We treated only the 5 aand 7 yr. old with 15 days of Zithromax anyway based on their behaviors and within 5 days no dark circles under eyes, by day 15 behaviors almost completely gone. After about 5 days off of the Zith, the behaviors slowly returned as well as the dark circles. After 12 days on no antibiotics I had my 2, 5, and 7 year old cultured, as well as myself. I also had titers done on my 5 year old who seemed worse off than the others. (MY 12 and 7 yr. old have had their tonsils and adenoids removed and I think my 5 yr. old gets worse behaviors b/c his tonsils are huge and are probably harboring the strep. ) My 2 yr. old also had what looked like a scarlatinaform rash all over his belly. We did not culture my 12 yr. old. My doctor agreed to put the 2,5,7 yr. old on Zithromax that day based on their great previous response to it. I also started my daughter on Zithromax ON MY OWN using extra Zith that I had b/c she most definitely had an increase in tics. Today is day 4 on the Zith, dark circles gone, my daughter's tics greatly reduced, their behaviors are slightly improved, baby's rash completely gone. I asked them to do a full respiratory culture,not just for strep A. Here are the results: Colleen (the mom) Beta strep, BUT NOT A,C, G, or B 7 year old son: routine upper respiratory flora, heavy growth 5 year old son: routine respiratory , moderate growth ASO 106 Anti DNaseB 1:170 2 year old: Group B strep (I have been GBS- group beta strep positive with all 4 of my pregnancies and even though I would be treated at 34 weeks with antibiotics, I would test positive again a few weeks after being treated so maybe I am a carrier of GBS??) I am thoroughly confused, don't know what to make of it all. These are the first titers that we have ever done on my son AND he had been on 15 days of Zithromax 12 days prior. One more piece of info I got today was my 7 yr. old titers that we did in Sept. of 2007 when he had a big increase in PANDAS behaviors. The ASO was 366. To my knowledge, the nurse at the dr's office had reported the titer to me as negative, but is an ASO of 366 negative?? So sorry for such a long post, but I am hoping someone can help me make some sense of this. Thanks!! Colleen
  20. Hi All, I recently posted about my children and just got the test results. I am very confused about the results and wondered if anyone has input or has experienced any of the same results. To quickly recap our situation, I recently saw a behavior change (irritability, hyperactivity, oppositional behavior, very emotional, crying easily) as well as dark circles under the eyes of my 5 and 7 yr. old boys (not "formally" diagnosed with PANDAS, but based on the similiarity to my diagnosed PANDAS child, I know they are PANDAS also). In addition, my 12 yr. old (PANDAS)had an increase in tics and my 2 yr. old has screamed, cried and thrown fits MUCH more often than normal. On Oct. 3rd I had the 5 and 7 yr. old cultured, results came back negative. We treated only the 5 aand 7 yr. old with 15 days of Zithromax anyway based on their behaviors and within 5 days no dark circles under eyes, by day 15 behaviors almost completely gone. After about 5 days off of the Zith, the behaviors slowly returned as well as the dark circles. After 12 days on no antibiotics I had my 2, 5, and 7 year old cultured, as well as myself. I also had titers done on my 5 year old who seemed worse off than the others. (MY 12 and 7 yr. old have had their tonsils and adenoids removed and I think my 5 yr. old gets worse behaviors b/c his tonsils are huge and are probably harboring the strep. ) My 2 yr. old also had what looked like a scarlatinaform rash all over his belly. We did not culture my 12 yr. old. My doctor agreed to put the 2,5,7 yr. old on Zithromax that day based on their great previous response to it. I also started my daughter on Zithromax ON MY OWN using extra Zith that I had b/c she most definitely had an increase in tics. Today is day 4 on the Zith, dark circles gone, my daughter's tics greatly reduced, their behaviors are slightly improved, baby's rash completely gone. I asked them to do a full respiratory culture,not just for strep A. Here are the results: Colleen (the mom) Beta strep, BUT NOT A,C, G, or B 7 year old son: routine upper respiratory flora, heavy growth 5 year old son: routine respiratory , moderate growth ASO 106 Anti DNaseB 1:170 2 year old: Group B strep (I have been GBS- group beta strep positive with all 4 of my pregnancies and even though I would be treated at 34 weeks with antibiotics, I would test positive again a few weeks after being treated so maybe I am a carrier of GBS??) I am thoroughly confused, don't know what to make of it all. These are the first titers that we have ever done on my son AND he had been on 15 days of Zithromax 12 days prior. One more piece of info I got today was my 7 yr. old titers that we did in Sept. of 2007 when he had a big increase in PANDAS behaviors. The ASO was 366. To my knowledge, the nurse at the dr's office had reported the titer to me as negative, but is an ASO of 366 negative?? So sorry for such a long post, but I am hoping someone can help me make some sense of this. Thanks!! Colleen
  21. Erica, I have been dealing with PANDAS for over 7 years and have never had my kids rage, however, they have experienced ALL the other symptoms/behaviors that you describe in your child. They also "keep it together" at school. When my daughter's tics were at her worst, she still was able to not do them that much at school, but would let loose the second she got home. Colleen
  22. Thank you for your replies! I think what may be happening is the same thing that occured with my two older children prior to having their tonsils and adenoids removed. When he is on antibiotics, the antibiotics kill enough of the strep to make his behavioral symptoms decrease and eventually go away, BUT as soon as he is not on antibiotics, the "left over" strep, hiding in his very large and probably cryptic tonsils, recolonize within days of stopping the antibiotics and all his behaviors return. Does that make sense to anyone or am I heading in the wrong direction? In light of my "theory", I would think his titers would be high, but I am afraid if they are "normal" it will be one more reason for my doc to say he does not have strep. He had a positive culture on July 7th., so about 4 months ago. His beginning of Oct. culture was negative, but I know he must have had strep based on how well he responded to the Zithromax. Colleen
  23. My son finished 15 days of Zithromax a week ago. We treated him even though his culture was negative b/c of behaviors I saw. Now I am KICKING myself that I did not do titers on him to prove to my slightly skeptical doctor that he definitely had strep. Is it too late to do the titers now? His behaviors have returned as well as his dark circles and slight rash on cheeks and I am considering taking him in this afternoon or at the latest Monday morning. I know you can have strep and still show low or normal titers, but if he does have strep again will the Zith he was on make it look like he does not have strep? Thanks. I am so confused... Colleen
  24. Char, My kids never get fevers with strep, in fact they rarely even have a sore throat. Given the history of a sore thoat and swollen glands, you may want to get him cultured. Also, my kids do react when they have illnesses other than strep, but a sore throat makes me suspicious of strep, especially during tris time of year. Colleen
  25. Every state has exemptions, but some states don't have a philosophical exemption, just medical and religious. Everyone, including daycare, preschool, and public/private schools, have to accept your exemption. I live in Virginia and we only have medical and religious, so I have always done a religious exemption. It has been really easy and no one has ever questioned me. Make sure you read what is required b/c to my knowledge, no one is allowed to question what religion you are. They just have to accept the exemption. This link talks about the presidential candidate's positions on vaccination. Very interesting. http://www.ageofautism.com/2008/09/obama-i-am-not.html Colleen
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