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Everything posted by colleenrn

  1. What antibiotic has your child been put on for the 4 positive streps? We experienced this when my daughter first started getting strep at age 4 1/2 (now she is almost 18). I thought she kept getting strep, but in hind sight, the strep was never being eradicated bc our dr kept putting her on amoxicillin/penicillin. If he has only been given amoxicillin or penicillin I would request at least 10 days of zithromax or even a cephalosporin (omnicef), then retest. The general rule is not to put a child on the same antibiotic that they have been on in the past 3 months should they get strep again, but many drs do not follow this. Colleen
  2. I would be suspicious of Lyme with those bands, even though they are indeterminate. Also, has she been tested for babesia and bartonella? They can cause those symptoms. Colleen
  3. I would try to find someone to put you on antibiotics asap. The "recommendations" for antibiotics pre-surgery, during surgery, and after tonsillectomy changed a few years ago and now a lot of ENTs are not giving them which is a bad idea. Antibiotics prior to surgery is not enough in a person with chronic strep. Antibiotics should be given IV during surgery and oral antibiotics post surgery to deal with the strep that is released during surgery. If the strep is intracellular, the penicillin and augmentin can't always reach the strep. Azithromycin(zithromax) would be a good choice. If your PCP won't prescribe them either, try a walk-in clinic with the symptoms of fever, sore throat and request zithromax. Best of luck to you. Also, to try to lessen the symptoms right now, have you tried ibuprofen every 6 hours for a few days? Colleen
  4. How did she determine it was strep? My children also do not usually have a positive culture either. One of them has terrible dental problems. How are you treating for it? TIA, Colleen
  5. I have four children. My oldest received the chickenpox vaccine at 18 months and within a week had a high fever and head to toe rash. Not sure if it was related to the vaccine, but I have always thought so. When she turned 10 she had a severe case of shingles. It was awful. My three other children did not receive the chickenpox vaccine and all three of them came down with chickenpox at the same time. They were two, five, and seven years old at the time. I did not notice any increase in their PANS symptoms while they had chickenpox. If I had it to do over again, I would not get the vaccine. I feel that we were lucky that all three of them got chickenpox at a younger age. I also feel that my husband and I and my daughter who was 12 at the time got a booster just from being around them.
  6. The treatment dose first strep with children is 12mg/ kg per day, so 150 does not sound too high to me.
  7. Three of my four children have had both tonsils and adenoids removed. Never considered just the tonsils. I think the adenoids harbor strep as much as the tonsils do. Also, whenever my children would get any type of respiratory illness, even a slight cold, they would snore and even have periods of sleep apnea. I believe it was because of their adenoids being infected. Has your dr said why he wants to leave the adenoids? Colleen
  8. I would not give the HPV vaccine to my children even if they did not have PANS. I think it is going to play out to be one of the most dangerous vacines of all time and I think (and really hope) it eventually gets pulled off the shelf. Colleen
  9. Could it be a type of neuritis? There is scalp neuritis where the nerves on your scalp are inflamed and painful. I think it can be triggered by infection.
  10. Can Dr L run an EEG on him? I think I would definitely rule out any seizure activity just to be safe. Colleen
  11. We are getting ready to do genetic testing through Courtagen on my four PANS children. It is mtDNA/mitonucleome sequencing. Has anyone done this testing and is it helpful in treating PANS? TIA! Colleen
  12. I started this thread in December when I got my children's coxsackie titers back. We just did a lot of bloodwork thru Dr T, including coxsackie A and B titers because my 10 year old PANS child is suddenly having severe anxiety related to school. He happily has gone to school since preschool and attended the first two weks of fifth grade as normal until all of a sudden he developed severe anxiety related to school. It began while he was sick with a bad cold and cough (I was suspicious of mycoplasma pneumo but labs were negative on that). He also may have had a GI virus that was going around school, but none the less physically sick for a week. Now he is terrified of school. I have eliminated anything that could be causing school anxiety (bullying, friends, work too hard). He is popular, very well liked, and a good student. Coxsackie A and B results just returned and most of the titers are higher than when I posted the results (Top of this thread) in December 2012. In Dec 2012 his Coxsackie A IgG titers were 1:1,600 (neg is <1:100) and they remain at 1:1600. However, his Coxsackie A IgM in December were 1:10 and 1:20 which is elevated (neg<1:10), BUT now the IgM titers have increased to 1:40. I have scoured the Internet for days trying to make sense of what is going on (without any luck) and have a Thurs. phone consult with Dr T, but wondering for any advice here. His ADB (anti-dNase B strep tietr) is 169 (normal is 170 and below), but I think this is significant because in Dec 2012 it was only 75, so it has more than doubled. He is curently on Biaxin and Augmentin and hoping to be put on an anti-viral soon. Does the four fold increase in Coxsackie A IgM mean active infection right now? He stilll complains of a sore throat, intermittent abdominal pain, and intermittent muscle pain- not severe but present. Another concerning symptom I have noticed is when he falls asleep his arms and legs jerk around a lot. This happens sometimes when my kids are super tired and they first fall asleep but this seems like more than that. He got in bed with me early this morning and fell back asleep. For an entire hour, almost every few seconds his body would twitch, arms and legs jerk, and it almost felt lke his muscles were twitching. When he is awke he is not having any tics at all (has had mild tics in the past with a flare up). Thank you in advance for any insight. Colleen
  13. I would increase your pen vk dose to four times a day ( 500 mg every six hours) to begin with and if you think it could be glomerulonephritis consider adding another antibiotic from another class ( azithromycin or cefdinir). I agree with once a day penicillin not being enough bc of the short half life. Twice a day would be much better. Colleen
  14. I am praying for a great out come for your son. Colleen
  15. Can you say more about the testing you did that ruled out PANDAS? It is not always so easy to rule out PANDAS and IMO if the tics began with a strep infection, I would remain suspicious it could be PANDAS. Did you test for Lyme through igenex? What "markers" came up positive in your Lyme testing? Did Dr Trifiletti test for mycoplasma pneumonia, viruses, strep titers? I am not pushing the use of antibiotics, but have you tried a course of 2-3 weeks of a treatment dose? Colleen
  16. Given his behavioral symptoms and urinary/sleep symptoms, could he have strep? Can you get him cultured? I would tend to treat him with a course of a different antibiotic (a cephalosporin like omnicef or a penicillin like Augmentin) while maintaining the zithromax weekly. Another alternative is to increase the zithromax to a treatment dose (12mg/kg/day). As far as a weekely diose of zithromax- this was never enough for any of my children. They require it daily. Colleen
  17. I really agree with Dedee's post. If it were me, knowing what I know now, I would give her the first dose of amoxicillin right now and go from there. Based on what you have described, it certainly could be PANS. Amoxicillin is not the optimal antibiotic if she has strep anywhere in her body, but it is the antibiotic you have and could start her on. The first few times my daughter had strep, she responded well to amoxicillin, after that she did not. I would not wait and see. You can figure out how to proceed with testing, PANS drs, etc... in the days to come, but you have the chance right now of starting to kill the strep if you give the amox. Make sure it is a good treatment dose for her weight. Colleen
  18. When you have mono and take amoxicillin or ampicillin (Augmentin too b/c it is amoxicillin) it can cause a measle-like rash and/or hives. A lot of times people discover they have mono b/c they are put on amoxicillin for strep or ear infection and then break out in a rash, which causes some drs to test for mono. A good anti-viral that may help is lauricidin (monolaurin). Colleen
  19. I would not go with amoxicillin, but you could try Augmentin. Make sure they give an adequate dose though b/c some drs dose it too low. If the strep is intracellular, amoxicillin cannot reach it. Sometimes Augmentin or a cephalosporin (omnicef, keflex, ceftin) will reach it, but not always. Azithromycin can reach the intracellular strep, but depending on where you live, it is a possibility that it could be a strain that is resistant to azith. Colleen
  20. The dosing for children by body weight for Augmentin is 20mg/kg/day- 40mg/kg/day. If you weigh 42 kg(92.4 lb.)then you are currently only getting the lowest dose (20mg/kg/day). If you dropped it to only 500mg/day, you would be getting only 12mg/kg/day which is a tiny dose. I would actually be taking more than that now. You could take 500mg three times a day (which would work out to be about 35mg/kg/day). See what your dr says.
  21. Are you taking a total of 750mg of Augmentin per day or are you taking 750mg three times each day??
  22. For strep: ASO, ABD titers and streptozyme titer. Mycoplasma pneumoniae: make sure they run an IgM and IgG Coxsackie A and coxsackie B panels. After years of PANDAS we checked coxsackie levels through Dr T and they are through the roof. Starting anti-viral treatment with fingers crossed. This link has been posted recently, but here it is. Apparently the strep and coxsackie infection together can be very dangerous. In light of this, I think that coxsackie should be checked in all children with PANDAS/PANS. Vitamin D level, EBV Tick borne illnesses: IgG and IgM western blot. Skip over the ELISA. Other tick illnesses to check for: babesia, bartonella, erlichia, anaplasma CBC with differential, IgG, IgA, IgE, IgM, IgG subclasses 1-4 Colleen
  23. If physicians have any problems with PANDAS children being on prophylactic antibiotics, I would ask them how they would treat the child with rheumatic fever. Guidelines for RF are prophylactic antibiotics into adulthood. Here are the AHA RF guidelines. http://www.aafp.org/afp/2010/0201/p346.html Colleen
  24. I have read all of the threads on coxsackie I can find, but am still confused. Can anyone comment on this please? Three of my kids just tested High for all coxsackie B titers and most coxsackie A. Coxsackie B 1:256 HIGH (normal is <1:8) Coxackie A IgG all were 1:1600 (normal is <1:100) Daughter was IgM negative for coxsackie A, yet two sons are both IgM positive. I have a phone consult with Dr T this morning. Are these viral loads high or very high? None of my kids have ever had any of the typical coxsackie symptoms. TIA. Colleen
  25. I have read all of the threads on coxsackie I can find, but am still confused. Can anyone comment on this please? Three of my kids just tested High for all coxsackie B titers and most coxsackie A. Coxsackie B 1:256 HIGH (normal is <1:8) Coxackie A IgG all were 1:1600 (normal is <1:100) Daughter was IgM negative for coxsackie A, yet two sons are both IgM positive. I have a phone consult with Dr T this morning. Are these viral loads high or very high? None of my kids have ever had any of the typical coxsackie symptoms. TIA. Colleen
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