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Everything posted by colleenrn

  1. The treatment dose of Omnicef for strep based on the child's body weight is 14mg/kg/day OR 7.5mg/kg twice per day. Colleen
  2. My boys get ADHD type behaviors as their main PANS symptoms. That is usually my clue they may have strep even though they are on long term antibiotics. They get fidgity , hyper, and very forgetful. Colleen
  3. When was the last time he had a throat swab done to look for strep? I would get one and make sure they grow it out for a full 72 hours. It is very possible to have strep and still have normal strep titers. A normal strep titer cannot and does not rule out strep because some people just don't get elevated titers. Have you also tested for mycoplasma pneumonia. It can cause the same PANS symptoms as with strep. They should do an IgM and IgG for mycoplasma pneumonia if you have him tested for it. When he had strep months ago and had allergic reaction to amoxicillin and azithromycin, what did you then treat him him and for how long? Have you considered trying to get your physician to just try and antibiotic trial to see if it helps at all? When you say his hands and feet got splotchy with amoz and azith, did he have any other rashes or allergic symptoms to the meds? Hang in there! Colleen
  4. My daughter responded very well when we added Augmentin to the zithromax. Colleen
  5. Did they only do a rapid strep test in the office or did they also send one out to be cultured for 72 hours? If they only did a rapid, I would definitely bring him back and have them swab him to send out for a culture. Many times the rapid will come back negative, but the culture turns positive. This way you could get antibiotics as soon as the culture showed positive. Physicians are supposed to always follow up a negative rapid test with a culture, but some do not and need to be told to do so. The strep titers should be the ASO and ADB (antiDnase . I would get a titer now and again in 4 weeks to see if there is any rise in it. Go to the helpful threads at the top of the page and read about titers. SO many physicians are practicing with misinformation when it comes to strep and how titers work. Also keep in mind, some people do not get a rise in strep titers when they do actually have strep, so a normal titer,unfortunately, does not rule out strep. Good luck! Colleen
  6. If he is allergic to penicillins and cephalosporins, but tolerates zithromax, you could try other similair antibiotics to zith. These would be clarithromycin (Biaxin), tetracycline, clindamycin. Colleen
  7. I would look for an infection that could have triggered your symptoms. I would test for strep, mycoplasma pneumoniae, and Lyme disease/co-infections. Colleen
  8. Good advice already given. I wanted to add- has she had any recent immunizations? I would not let her get any for the time being as they can exacerbate symptoms. Amoxicillin can be ineffective in treating strep in some people. Augmentin would be better- also ask about azithromycin, which can reach intracellular strep when amoxicillin cannot. Colleen
  9. I am taking 100mg of doxycycline twice a day after a CDC positive western blot. Within 15 minutes I have overwhelming nausea and fatigue. Is this herxing or a side effect? TIA. Colleen
  10. Those doctors are ignorant and uninformed. You are doing what you need to for your child. You are being a good mom. As hard as it seems right now, keep fighting for your child. There are so many compassionate and knowlegeable physicians out there that get it. These physicians are NOT them. Hang in there and don't let them discourage you!! Colleen
  11. Glad you got the swab and more blood work. If your son was positive for mycoplasma pneumo last month and was not treated with the right antibiotics/right dose and length of time, he most likely still has mycoplasma pneumonia and in my opinion and what I have learned he needs to be treated ASAP. The myco pneumo will not just resolve itself and if this is the cause of the petechiae, he really needs antibiotics. Mycoplasma pneumoniae can trigger PANDAS just like strep does. Hope you get answers soon! Colleen
  12. Hayley, Your physician is so wrong about misdiagnosing scarlet fever due to normal strep titers. Many people (especially PANDAS kids) do not get elevated strep titers with strep. I read back over your posts from last week and the rash you described sounds just like a scarlet fever rash. Did your son ever have a throat culture, if so was it a rapid one or grown out for 72 hours? What antibiotic did they put him on and for how long? Can you describe what his petechial rash looks like? I would be concerned that this could be a bacterial infection (with petechial rash) and would want them to run a lot of tests. I would ask for a throat culture and insist it be grown out for a full 72 hours. You have to be sure that the person doing the swab on his throat vigorously swabs both tonsils and the back of the throat. You can also have strep in many other areas of the body that a throat culture would not detect (perianal area, adenoids, skin, GI tract). Is the area around his anus red at all? If so, I would have them do a swab of that(both a rapid and a 72 hour culture. I would do a CBC with differential also. What was his WBC count? I would have them also check his sed rate (ESR). I am sorry you are going through this. i know how scary it can be. Just know that you are the mom and you are advocating for your son and be as assertive as needed to get the answers you need. Hang in there! Colleen
  13. Just received IgG WB results. I am positive for IgG band 18 (already knew I was positive for IgM bands 23 and 39.
  14. Can anyone help me interpret my WB results please? I am positive for IgM bands 23 and 39 (which is CDC positive). I am only positive for IgG band 18. Could this mean it is an early infection or am I being to hopeful? TIA! Colleen
  15. I just tested positive for babesia duncani (WA1) just like my son. I also just tested CDC positive for Lyme. Had bands 23 and 39 IgM positive. Two weeks later lab Corp says IgG on WB still pending. Not sure what is going on, but IgG should be back by now. I contacted the health commissioner for my state who is telling me the babesai duncani is a false positve that cross reacted b/c it only occurs on the west coast of the US...surprised to hear her say that? Not at all. Anyway, she said I can have my dr submit my blood to the CDC Parasitic Branch for laboratory confirmation. Has anyone done this? I am going to do it to prove that Babesai duncani is across the US and may not show the same tell tale symptoms as babesia microtti. The Health Commissioner said that for years commercial laboratories have been reporting positive babesia duncani results, but because the people don't have the typical babesiosis symptoms, they are told that it is a false positive. My questions if anyone can help are: 1. what treatment are people taking for babesiosis? 2. has anyone submitted blood work to the CDC to prove they are positive? 3. has anyone had to wait a long time for their IgG western blot results? Thanks so much! Colleen
  16. The liquid is supposed to last for 10 days, but sometimes it turns yellow before the ten days. I also think it is not as potent once it turns yellow. Keep it in the back of your fridge also, not on the door to try to keep it consistently cold. Colleen
  17. Thanks for all the info! MDMom- When you say the babesia has not cleared after 19 months, does the IgM or the IgG remain high or both? SFMom- When you say it is good he converted so fast, what does that mean? Does it indicate the 3 weeks of Alinia started to work? We have been treating for Lyme since Feb., but his WBC and CD57 remain low. His liver enzymes are no longer elevated though. I have been reading that there are other tests for babesia besides the antibody tests. Has anyone done any of these? TIA! Colleen
  18. We did the babesia microtti Antibody Panel which tests the IgM and IgG and also babesia duncani (WA1) antibody, IFA through Lab Corp. The babesia duncani only gave us the IgG which was positive. I now am trying (with difficulty) to figure out how to test IgM for babesia duncani. Does anyone know? Given that he was IgG positive for a babeisa that most drs around here say does not exist on the East Coast, I want to test further. Does a positive IgG for babesai duncani mean he has an acute infection? Colleen
  19. MDMom- I am not sure why an IgM was not run on it. I have my phone consult with Debbie McCabe next week so I will ask to run it. I reluctantly did the 3 weeks of Alinia last month b/c I was not so sure he had babesia. Debbie said if he did it would most likely show up as positive after the Alinia and it did. My son's liver enzymes have been on and off elevated throughout all of this. He has been on zithromax since May so I am thinking she will want to add mepron to the mix. His IgG is low as well as the four IgG subclassses, as well as his IgM, so this babesia scares me more than the Lyme did as I am reading about how DIC can be a complication, especially in immunocompromised people. Did you ever use Alinia with zithromax or just Mepron with zith? Do you periodically checks labs for babesia and your son continues to test positive after 19 months of treatment or are you basing it on his elevated liver enzymes, low WBC, and low CD57? TIA. Colleen
  20. My 6 year old son was negative for babesia microtii and babesia duncani when we tested him for it in April. Even though he tested negative, our LLMD felt he could have it based on his other labs (low WBC and very lowCD57). We decided in August to treat him for babesia with 3 weeks of Alinia, in addition to the daily zithromax he has been taking for months now. Our LLMD said that once we were treating the babesia, he may show up positive in his bloodwork. Bingo- she was spot on. Just got labs back. He still tests negative for babesia microtii, but he is IgG positive for babesia duncani. The lab reads as : WA1 IgG Antibody, IFA 1:256 HIGH Interpretive Criteria: <1:256 antibody not detected > or = 1:256 antibody detected Can a IgM be run on babesqai duncani? His CD57 remioans low at 24 (was 23 in March). His WBC remains low also. Any help would be so appreciated! I was not expecting this to be positive. Colleen
  21. I did 28 days of doxycycline with my 5 year old son after researching the heck out of it for more than a month. He had over a month of horrible, different types of rashes. None of the first physicians tested for it even though we made several trips to 3 different drs locally and had 35 days of bad rashes. It was when we went to an LLMD that we were told he needed to take a course of doxy to cover for a rickettsial infection just in case and b/c of the persisitant rashes. I was too afraid to give it to him b/c I was taught that doxy could never be used in kids under 8. We then did titers and he was IgG positive for it. I will try to post some links later, but if a child has any rickettsial infection, doxycycline is the treatment regardless of the age of the child. He was on day 40 of rashes when I gave it to him. Within days the rashes were alsmost gone. Unfortuantely, SO many health care professionals do not know this. It is the fear of teeth staining that keeps physicians from prescribing it, which is so dangerous when you have a rickettsial infection. Colleen
  22. Besides the double dose of tindamax and the doxycycline, I have been told to immediately soak the site of the tick bite with echinacea tincture. I also put rubbing alcohol and/or peroxide on the site, then neosporin. Maybe overkill, but I will try anything at this point. Colleen
  23. Strep could be elsewhere in the body. It could also be they just did not get a good swab. With an ASO of 656 I would definitely treat for strep, so the clindamycin will be good. Colleen
  24. Just had phone consult with LLMD. Our LLMD thinks he could have babesia. She said there are over 300 strains and she can only test for two. She said that the Institute of Medicine says if all tests for co-infections are negative, BUT you have low WBC and elevated liver function, then it IS a co-infection. She said the IgG on the parvovirus B19 (Fifth's disease)is really high. That virus was going around his school all spring. He did not have any symptoms of it at all though. She feels his IgG is so high b/c his immune system is so taxed it is not getting rid of it. She said we may possibly want to try low dose naltrexone (LDN) to boost his immune system. His IgM is very low. I have seen LDN talked about a lot on here- will have to go back and read up. Colleen
  25. Three of my four children have had a T&A. It helped them a lot. My oldest went into complete remession for 18 months. She was not on any antibiotics for the 18 months after the T&A (we did not know at the time to keep her on antibiotics) and had a flare up when she got strep. My second and third children went into remission also, but not for as long. They remained on antibiotics though. My youngest was supposed to have a T&A in the spring, but then was diagnosed with Lyme...he will still get it done, just waiting. My opinion is that is is helpful even in kids who have "normal" looking tonsils. I would just caution to make sure they get antibiotics before, during, and afterwards. I think that is crucial. Colleen
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