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Everything posted by nicklemama

  1. My son has PANS/lyme. How long did you treat the lyme disease? It sounds like it was not eradicated. I think you need to see an LLMD and test for coinfections and resume lyme treatment if you are no longer treating for lyme. Lyme treatment has significantly helped my son but its a long road of treatment. 30 days of abx for lyme is not going to cut it.
  2. As the mother of a son who has no history of tick bite and also had completely normal titers every single time it was tested and never positive for strep throat culture, I highly advise you to find someone has qualifications to diagnose lyme disease and have him tested by a specialty lab for lyme and also for the coinfections of lyme......ehrlichia, anaplasma, bartonella, babesia. My son was treated for PANDAS for two years, even though he never had strep titers and had high dose IVIG twice but it was not lasting. When I finally took him to see an LLMD, he came back positive for lyme through Igenex and positive for ehrlichia and anaplasma through Quest. He has bartonella but he has never tested positive for it. Treatment for lyme and coinfections has made all the difference. He still has the PANS portion of it, though and has small flares in behavior when he is sick or loses a tooth. He is now 12 and just lost the last baby tooth. I celebrated.
  3. How would they test his eyes? My son had the skin prick testing at an allergists office that showed allergies to dust/mites, feathers, outdoor mold, tree pollen. My son had tics too, but they were not related to his eye/allergies.
  4. Look at the pm I just sent you. You can read it by clicking in the upper top right hand corner of this page.
  5. Are they red and itchy? My son started getting red eyes before PANS. Allergy testing found him to be allergic to some things. Now that he takes Claritin daily, no more red eyes. I mean so red they almost looked bloody and he was constantly being sent home for pink eye, despite the fact that he never had goopy eyes.
  6. My son never had strep. Titers always normal. Turns out he had Lyme and coinfections. Throw a wide net to figure what infections are causing this so you can choose the right treatment.
  7. You just described my sons behavior when he was five. Hit, kicked, spit, scratched, bit, whatever he could. Threw things. Totally out of character. Never did it at school. We are six years down the road. You would never guess he ever did any of that. Hat is totally a PANS behavior. My son turned out to have Lyme and coinfections, specifically bartonella, which causes rage.
  8. Test for every thing. My son had classic PANDAS presentation but we never found him to have strep or be positive on blood tests for strep. Two years of treating for PANDAS brought him some relief but he was still struggling. Changed doctors, who tested him for Lyme and coinfections and there was our answer. Test for everything and don't limit yourself to a narrow focus on one infection. It will save you time, money and most importantly get your child well in a shorter period of time.
  9. I sent you a pm. To check your messages, go up to the right hand corner of the page.
  10. There is a correlation between POTS and lyme.
  11. Haven't used cholestyramine. DS's doc uses Welchol on kids. I did not notice terrible ramping symptoms and we saw slow and steady improvement over a few weeks time. You might consider lowering the dosage and slowly building up. DS has an HLA gene for mold too, but not the dreaded one. We installed a high efficiency dehumidifier in our basement. Put a sealed cap on the sump pump. Installed a return air vent in the basement. Placed a high quality air purifier in DS's room. Mold testing showed mold within normal limits in our house but we went ahead and did the things that we could without a professional. The return air vent was installed when we got a new a/c. Once we got the basement drier and started the Welchol, activated charcoal and Medi Clay, the last remaining symptoms went away. And his C4a dropped back into normal range.
  12. They are contagious. My friend's son had them for over a year and then they spread to her daughter. The derm used a blistering agent on some of them but there were too many. My friend tried a homeopathic cream called Zymaderm and that got rid of them.
  13. My son's lyme and coinfections were dormant too, until FluMist. The most significant treatment that was a game changer was adding a second antibiotic and treating for his lyme and coinfections. We messed around treating PANDAS, even though he never had strep, for far too long and it just didn't work. Augmentin and IVIG just didn't do the trick. My son has never had a known tick bite, although we have camped many times in lyme endemic areas of our state, where in a few counties, upwards of 80% of ticks tested are carrying lyme. Lyme was not on my radar then.
  14. I don't know much about the epitope test. If he has ehrlichia, there is a very good chance he also has lyme. It has been very difficult to rid my son of ehrlichia, which makes his LLMD think he was congenitally infected (he is adopted). He was also treated for clinical symptoms of lyme and bartonella. He was bart negative and lyme negative with not enough positive bands and many indeterminate ones that were lyme specific. When we added the bart treatment, it really upped the game and made him very well. After nearly 3 years, he still has very high ehrlichia titers that fluctuate up and down but never into negative status.
  15. My son has ehrlichia. He first tested positive almost three years ago. His PANS symptoms(neuropsychiatric) were the only symptoms of it and lyme, outside of the fact that he was fatigued and the bottoms of his feet hurt (bartonella). It has been very difficult to rid him of it. He still has high titers to ehrlichia that stay elevated and go up and down but never back to normal. We are still working to rid him of it. That said, he is doing very well now. We treated him for lyme, although he was CDC/Igenex negative but he had many indeterminate, lyme specific bands and a couple of positive lyme specific bands. He has also been treated for bartonella, though he only had symptoms, no positive tests. Bartonella testing is not very accurate. He has an IgA deficiency that makes it difficult for him to kick infections. My son has had IVIG twice. I doubt the IVIG was the source. Besides being symptomatic before the IVIG, which is the reason he had IVIG, the filters that remove the Ig would separate out bacteria from the blood as well, since Ig is smaller than bacteria. Ig is made by running blood through filters to sort out the Ig. Viruses are smaller than Ig, so they may ride along with the Ig.
  16. I would try and get the pediatrician to fill a script for Augmentin. My son took Augmentin, prophylactic dose for about 1.5 yrs. He took Augmentin, treatment dose, for 2.5 years. Dr. K will prescribe a prophylactic dose after the IVIG. I would move mountains to get a script for the three weeks.
  17. Dr. K does not deal with lyme. My son is a former patient of his. My advice is to the seek the help of an LLMD. My son did not get better until I took him to an LLMD. I wasted 2.5 years on PANDAS treatment, including the cost of IVIG twice.
  18. If your child doesn't have strep, I would cast the net far and wide for other infections. My son never had strep that I knew of. Never tested positive on culture for strep and never had titers. We messed around treating PANDAS as if he had strep. He just couldn't get completely better. I took him to see another doctor and he was tested for lyme and found to be positive for lyme and coinfections. Please know that strep is not the only infection that will trigger PANS. Lyme, coinfections of lyme, mycoplasma, flu, pneumonia, HHV6, EBV and other infections are all capable of triggering PANS. I lost two years treating PANDAS when we should have been looking for and treating what turned out to be lyme.
  19. I agree with Nancy. I know some will disagree with me but I never had strep notices sent home to me. I assumed there was strep. My son is on abx year around. He is in middle school this year so I'm hoping there is less illness but its probably just wishful thinking. He has a cold right now.
  20. I found the study interesting. My son was classic sudden onset. He had IVIG twice in Chicago, 19 months apart. It did not keep him from becoming symptomatic again. I'm happy it worked out for these 12 but it is not representative for every child. I would like to know the overall percentage of children helped by IVIG. Dr. K follows up at 3, 6 and 12 months and then no more. It's been three years, to this day, since his last IVIG.
  21. I hate to be an echo but......move on. I was told by a neurologist that my son's sudden, dramatic change was due to my lack of firm and consistent parenting. I took him there because he was so suddenly not himself in such a dramatic way, I thought he might have a brain tumor. It was the first of my many disappointments with doctors.
  22. That is a curious thing to say about probiotics, given antibiotics kill off beneficial gut bacteria and set you up for gut issues and possible C Diff. The standard for long term antibiotic use is a good quality probiotic a minimum of two hours before or two hours after antibiotics.
  23. I don't know if she is on here very often but I am in contact with her on another board. Her daughter sees Dr. Doctor and is doing well. I will let her know you are inquiring.
  24. I loved reading this update. So happy for your son. Gives me hope that mine can go off to college and have a normal college experience like others. My son has also reached another educational milestone. He went off to middle school last week. He reports he loves it. We were holding our breath. He was placed in the academically talented program and that required him to go to a different middle school,away from all his friends and the kids in our neighborhood. He has been able to deal with all the bumps that go along with middle school, so far. He came home laughing yesterday and telling me he accidentally went into the girls bathroom, lol. Hooray for your son. There is a light at the end of the tunnel.
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