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Everything posted by colleenrn

  1. For those of you that your doctor gave either an antibiotic shot or IV antibiotics during surgery, did your doctor give you a reason why? Did they say they do it for all of their patients? Did they say the consequences of not giving it? Did you specifically ask for it to be given? My son is having his T&A on Monday and his ENT refuses to do antibiotics- inject or IV. She plans to give his a scrip for amoxicillin..... Luckily, Dr. T gave me about 2 1/2 weks worth of Augmentin, but I still feel a shot of penicillin or something IV is Not overboard. Any thoughts? I am afraid he will vomit the Augmentin. My older two kids vomited on and off for 1-2 days. If that is the case, he would not be covered by antibiotics. I will continue the zithromax up until the day before surgery and restart it as soon as he can swallow the pill, which hopefully will be after 3-4 days. Colleen
  2. Yes, 600mg/day of Omnicef is the adult dose. Colleen
  3. None of my children or my husband or I will be geeting a flu shot or mist. I am worried about flu season, really, really worried b/c last Oct. my 9 year old son with PANDAS got the swine flu and 2 weeks later got the seasonal flu. He was very sick (not hospiitalized but very ill), but I am still more afraid of what the vaccine could/would do to him. I have used with great success oscillococcinum. Like someone mentioned earlier, take it at the very first sign of the flu. I also start giving it to my other children once one child has shown signs of the flu. It can be taken by any age, even in pregnancy (check with your physician first if you are pregnant), but my OB had me take it when I was pregnant and had the flu. I am the most leary about the live flu mist vaccine. I don't think it is safe for any child with PANDAS. I do not like my kids around anyone who has just received it either. One good sneeze and how many kids are getting ther flu mist? It is a hard decision!! Colleen
  4. I am so sorry for what you are going through. Given how sick your child has been, I would really ask/beg/out right insist on changing his antibiotics to something much more effective than amoxicillin. Amoxicillin and penicillin can have up to a 25% failure rate with strep. I am surprised they would even put him on amoxicillin after he has been so sick. Zithromax or a high dose of Augmentin would be much better. Even a cephalosporin (keflex or omnicef) would be better than amox. Colleen
  5. I had another thought about meds, just short term. I had mentioned valium and benadryl, but another option is xanax. Children take it preoperatively for anxiety. My dentist even offers it to her pediatric patients before having a cavity filled or tooth extracted. One more thought is for you, your husband, or any family member to obtain antibiotics and give it to her (hope I don't get in trouble for posting that), but if it is strep or any bacteria causing these symptoms, that is what she needs even if your physician is not of that belief. Do any of you have any symptoms that a physician would treat with antibiotics? (sore throat, ear ache, even acne). Ask around who knows of a physician who is liberal with antibiotics. They are out there for sure. Colleen
  6. I am so sorry for what you are going through. Have you done a throat culture yet? If it were my child, I would somehow obtain antibiotics for her today. Maybe a culture would be positive and they would put her on antibiotics today. Maybe you could present it this way to your physician. Tell them that you really want to try antibiotics today b/c you strongly feel it is PANDAS. Present it to them that a course of antibiotics (get one course now and deal with gettting more later) is far safer for a child than risperdal. I am a nurse and have given risperdal to adults and older teens, but I would be scared to give it to my child. With your daughter having the possibility of harming herself, I know you need help today, but if i were in your situation, I would be opposed to any psychiatric admission. I would feel more comfortable giving benadryl and valium short term than risperdal. I don't know if this was of any help, but I am thinking of you. Colleen
  7. I hope to do a month long steroid taper with my 14 year old daughter. She did a 5 day burst this summer and started to improve on the 5th day, then started to backslide. I know 5 days was not enough. She weighs 130 lb. For those who have done a month taper do you think this dose is a good dose for her weight? week #1 40mg/day week #2 30mg/day week #3 20mg/day week #4 10mg/day TIA! Colleen
  8. Has your son been on zithromax? If the strep is intracellular, the zithromax would reach it where the Augmentin may not. Colleen
  9. I just wanted to add not to rule out PANDAS based on normal titers. My children most definitely have PANDAS, but have normal titers (ASO, ADB). Colleen
  10. Is it a biopsy that I ask them to do post surgery? I asked the ent if she could culture them and she said " if the pandas specialist tells me what to culture for" and that she only sends them to pathology to make sure there is no tumor.
  11. I did a five day burst last month with my seven year old son, prescribed by Dr. T. He took prednisolone 15 mg for 5 days.
  12. Melatonin (the sublingual kind) works well for us with sleep disturbance. You may want to try a dose of benadryl to see if that helps, short term. Colleen
  13. My ENT said that she puts all of her patients on oral amoxicillin post surgery. She said she does not use IV antibiotics or antibiotic injections (shot of penicillin). When I questioned her about the fact that many ENT's use IV or injects of antibiotics with surgery, including my nephew's ENT who recently told my sister he gives all his patients a penicillin shot during surgery, she told me that she was a "hold out", meaning that she is one of the very few doctors in this area who even give antibiotics post T & A. He is on daily zithromax, so I will probably increase his Zithromax a week prior to surgery. I am not thrilled about amoxicillin and may ask her to at least make it Augmentin. OR, should I push and insist on a penicillin shot? I also asked her if she could culture the tonsils post surgery to see what was in them and she said she would IF my "pandas specialist" called her and told her specifically what to culture for. She said she always sends the tonsils to pathology, but they merely tell her it is free of any tumor and do not look for pathogens. When I told her my nephew had been on months of Augmentin and Zithromax and still had numerous bactria show up in his post surgery culture, she said that she would expect that b/c we have lots of germs in our mouths. This was what my nephew had culture out of his tonsils post surgery. Smear Result (Anaerobe Cult/Stain) 4+ WBCs 3+ Gram positive cocci in pairs and chains 2+ Gram positive dipththeroid-like bacilli Culture: 4+ Mixed anaerobes, unable to isolate for identification Any thoughts? I do not think that after being on months of Aug and Zith that it is normal to still have all of this bacteria. Does anyone know what terminology to use with my ENT to explain what to do with the tonsils post surgery? Is it a "smear" and culture that i ask for? Seems like she should know. I have had really bad luck even getting in touch with Dr. T to interpret my lab results he ordered, I am afraid I will never be able to get him to call her. Anyway, surgery is 3 weeks from tomorrow and even though I have been through it twice before with my older children, I am already getting so nervous and worried. Colleen
  14. My 7 year old son is having his pre-op appointment with our ENT today for his T & A scheduled for Oct. 25th. My oldest two children had their tonsils and adenoids removed several years ago, but with a different ENT. He is currently on Zithromax 250mg daily and has been on this for 23 months. After several exposures to strep over the past 2 months, I am SO SO worried about his "strep status" going into surgery in a few weeks. I seriously doubt any culture would come back positive at this point, so I am wondering what I should do about possible "left over" strep in his body. My nephew recently had a T & A and even though he was on Augmentin for 3 months and zithromax prior to Augmentin, his tonsils after removal still cultured out for WBC +4, mixed anaerobes +2, and a few more that I forget. His ENT gave him an injection of penicillin during surgery (bacillin). Has anyone had either IV antibiotics or antibiotic injections prior to or during their tonsillectomy? When I first took him to this ENT and she saw that he was on daily antibiotics, I thought she was going to faint on the floor. She just kept saying, "UGH.. antibiotics..UGH". Gee, wonder if she would have her child on antibiotics if they had PANDAS... Anyway, I feel a battle coming on. She had better not flat out refuse to do it. It is standard protocol for prophylaxis with rheumatic fever. TIA. Colleen
  15. It sounds like impetigo, especially since all your kids have it. It is very contagious. It could be from staph, strep, or both. Regardless, it needs to be treated with oral and topical antibiotics.
  16. I was wondering what is the best way to get in touch with Dr. T if you have already done a phone consult with him. TIA. Colleen
  17. Pseudomonas is responsible for a lot of nosocomial (hospital aquired) infections. For a healthy person with a good immune system, it can not cause many problems, but in a immune compromised person, it can cause problems. What did your physician say about treating it? I would definitley treat it in any of my children and reculture to be sure it is totally erradicated. Two of the antibiotics used are gentamycin and cipro. There are others also. http://emedicine.medscape.com/article/226748-overview Colleen
  18. I feel exactly the same way. Last year I struggled as to whether to pull them out of school on the day and day after the vaccine was given, but it turned out they only used the injections. Yes, if a child gets the flumist and sneezes near your child, it IMO, is exposing them to the live vaccine. For this reason and b/c lots of children in schools are immunocompromised, I think it is neglegent for any school to give the flu mist during school hours. Can you keep him home that day? Will they only be giving it on that one day? Colleen
  19. It does not matter where the strep is in the body, it just needs to be there to exacerbate PANDAS. It can be one small patch of impetigo caused by strep on the skin and cause PANDAS symptoms. In my nephew, he can sometimes have one red eye and my sister sees a big flareup in symptoms. That is very intersting that the dr said pink eye is a sign of untreated strep. Looking back, my now 14 year old got pink eye all the time when she was much younger and I never connected it to PANDAS. If we could only know then what we know now... Colleen
  20. Finland’s National Institute for Health and Welfare (THL) has suspended the use of the H1N1 vaccine over fears that the shot is linked with a 300 per cent increase in cases of the neurological disorder narcolepsy among children and young people over the last six months. http://www.examiner.com/family-in-seattle/seattle-h1n1-flu-vaccine-recalled-for-seizures-kids-europe-how-safe-is-it-for-your-kids Colleen
  21. Since he already tested postive for band 41, can I just have the other "crucial" bands tested? The western blot was through Quest lab. He has been on daily zithromax for 23 months (21 months at time of test). That makes me feel a little better, but theis fever is very concerning. He, once again, got 101 temp last night, but was fine in the morning. He is home from school and I plan on taking it every hour b/c the past several days it has been right around 5-6 pm that he spikes the temp. Also, when he gets the temp his legs feel achy and he feels nauseated. Colleen
  22. I recently had a Lyme disease Western blot done on my four children. Everyone had normal results except for my 9 year old son, who had Band 41 reactive. (BTW, he also had an elevated streptozyme even though he has been on 23 months of daily zithromax. my other kids titers were normal) Whenever this child gets a virus, cold, ear infection, influenza, etc.. he gets FAR worse and more sick than my other 3 kids. Last week he ran 102 temp on and off for days, vomiting, achy when my other 3 kids were only sick for 48 hours (definitely an intestinal virus that was going through their school). I am worried about him b/c he had been fever free for almost 2 days and spiked 101 temp, again. Could he have Lyme disease and that is why he always gets sicker? Do your children with Lyme get sicker than their siblings who don't have Lyme? More questions, more frustration, more worrying... TIA. Colleen
  23. I have read all of the old posts I can find on mycoplasma pneumonia and can't find the answer I am looking for. I posted this summer about doing comprehensive lab work on my 4 children and myself. My ASO was 396 and my streptozyme 400. I took 21 days of zithromax 750mg in July and have not had my levels restested yet. BUT, this morning I was looking at all our labs again in attemptiong to compose an email to Dr. T (he ordered our labs after a phone consult in June and we still have not discussed the results or any plan of action, so I am trying to figure it out by myself). I don't know how I overlooked this, but my M.pneumoniae is 2.27 which is high (the normal is <.90 and the positive is anything over 1.1. I had not been sick, no cough, no symptoms whatsoever. Can anyone advise me or help me figure this out. TIA. Colleen
  24. My positive mycoplasma pneumoniae was for IgG. That is all we tested for. Should I have done IgM also? TIA. Colleen
  25. You are so right. It does hit home and it hits it hard,and it is disgraceful, IMO. I can't get past the suffering I have seen, heard, and experienced with PANDAS over the past nine years, and in anyway, reconcile spending close to a million dollars on HIV teaching to African citizens rather than figuring out PANDAS for our families. How may IVIG's would $800,00 pay for? Would it pay for your child's IVIG? Would it pay for my four children to have IVIG? Guess we won't know. I admit. I am mad. I am disgusted. This is wrong. Colleen
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