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hugs2day

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  1. I know some of you have mentioned this disorder on the forum and it has been on my mind for awhile. Seriously thinking this might be my youngest son's problem. Do I ask regular dr. for test or should I pay consult to pandas dr. to order test? Is it run by Quest or specialty lab?
  2. We had the same cycle early on with my youngest son. It was a two week cycle then a weekly cycle (Thursdays). The cycle finally stopped after adding flagyl for 21 days and repeating for 3 months. It was the treatment that put my son over the hump. The cycles are gone and he has made greater strides in healing. He had a lump behind his right ear at the onset of PANdAS diagnosis and after the 3 months of flagyl the lump is gone and so much of the ocd went away (the worst of the ocd went away). Some improvement on anxiety and no more rages. It took a lot of antibiotics. daily zith, oc
  3. We had the ping pong problem with impetigo and strep for years (2 boys 2 years apart and they used to share a room). Both would be on abx and it was still a problem. I had to go hard core to try to eliminate the source. Keep kids apart (separate bedrooms, separate tooth brushes, separate toothpaste, etc.) Replace toothbrushes and toothpastes frequently. HEPA filtiers with blue light in bedrooms. Replace utensils strep is very hard to kill. A doctor at the minute clinic suggested I clean silverware well in Clorox I threw it out instead and bought new. I also took a step furthe
  4. FYI- Webinar tomorrow 9/24/2013 sponsored by TACA for those of you who have kids with autism and pandas. You have to register.
  5. Aside from Quercetin, Vitc and Zinc. We have our son use Xclear Xylitol nasal spray, shower to wash off allergens, he has Oreck Hepa cleaner in his room and we run an Ecoquest machine in the house for a little while each day. These machines seem to have helped tremendously. When things are bad I use allegra it does seem to help but I have not given to him in a long time and he is doing great on just the above.
  6. My oldest son is a ticcer with pandas and ofcourse ocd but for a year we tried first augmentin and then azitrho neither touched the symptoms enough to say that we were convinced it would ever be relieved but when the neuro swtiched him to PennVK as a last ditch chance before we tried clonodine --- PennVk was the answer --it worked. He had dramatic improvement in all symptoms within days and then weeks and then a year and half later he is off all antibiotics. So sometimes the treatment just calls for another antibiotic or sometimes two at once. My oldest son responds well to Penn VK
  7. my youngest developed impetigo on his hairline at forehead at the start of the year and now my oldest has impetigo on scalp at back of head. The problem for my youngest started several months ago around Februrary and has been cycling. He will get well with 7 days of Keflex and then be well for 4 to 5 days off the keflex and then the impetigo is back. He has a huge yeast issue now so that has thrown gasoline into the fire. The impetigo is clearly a trigger for Pandas he will get intrusive thoughts and cry and scream with terror. Never a friggin break from strep. First years of strep throa
  8. trintiybella, Has she ever had Flagyl? When my son was in crisis and we also suspected BART Flagyl was a saving grace. I can't tell you what a miracle drug it was for my son. This was after years of doing well on just Azithro. He had a swollen lymph node behind his right ear for 2 and half years and then when he took flagyl for 21 days with one week break in between and then a second go around the lymph node disappeared in addition to the suffering from neuro psych symptoms. I still have too use the flagyl on him occasionally because he will relapse somewhat but at least it give
  9. My son presents with the same GI issues you describe since Pandas derailed his life. Krigsmen treats with steroids for about 6 months with both prednisone and entecort . Then rotates flagyl and diflucan and then cipro . I have contacted a lot of families that he helped the children but I can't come up with money to see him . He will want to scope your child and the total cost to get treatment started is close to 20k. Dr. Buie will take insurance if you can travel to MA.
  10. Does this doctor treat Pandas? Or does he do spinal tap for NMDA receptor? I have been curious since reading the book Brain of Fire. My son was born with a Tetratoma that had to be removed at 9 months of age. it had teeth, bone, skin, etc. So I am very interested to hear more about this dr. Sorry not trying to hijack this thread just very curious to hear more about this dr. I was not aware families were getting into see him for PANDAS diagnosis.
  11. Amy, I will share my childs story incase it can help you. My 5 year old had chronic pharyngitis (strep sometimes) for about a year. He got T&A and the throat thing resolved but then it turned to impetigo cycling every 4 to 5 weeks. Teeth are also a trigger for him when getting in permanents. Tooth decay is made of streptococcus mutans so it is likely that was the source of your childs flare unless she also gets strep throat. For my son I would definitely say the T&A was beneficial his tonsils were touching and he was chronic with throat infections. But I would highly recomme
  12. I dabbled in homeopathy but found I prefered the big guns so I am not too much help with homeopathy. Although I did find that phosphorous 30cc helped my oldest tremendously when in a flare. Sorry your DH is feeling deflated I know the feeling as timing is always bad for us on vacation as well. This might sound kooky but Alka Seltzer Gold calms down our youngest son ( the most difficult) when we are on the road we give with ice chips and it changes his mood. We know it changes the pH in the body and the ice chips keep him occupied probably helping with digestion too. Some forums say
  13. Some of the doctors on the list will do a phone consult and fax in the abx same day. I had to do that the first time because my son couldn't even leave the house. Thank You Dr. *** in CA ! he saved our lives. At first we tried Augmentin for my son and I saw slight improvement. My son was bad off when PAndas hit and it was literally overnight exorcism. Then I called the dr. back after 9 days with mild improvement and he said lets switch to Zithro. I saw immediate improvement in my son that day very dramatic. He has been on zithro since and sometimes even off zithro for long perio
  14. I would recommend this website for monolaurin. www.ourkidsasd.com its the lee silsby compounding pharmacy. I trust the products on this website and you can search under yeast management for all the products that will help including monolaurin capsules. Also my son also can have the drunk look when yeast is flaring and an extra dose of sach B in the evening helps. Good luck.
  15. I started using melatonin on my then 5 year old 3 year ago. only .05 mg even though the doc told me to use 1mg and I could go as high as 3mg. .05 mg always worked. Sometimes when he passes the sweet spot where the melatonin would have worked to put him to sleep I have no choice but to add .05ml of dye free benadryl. he drifts right off. The sleep is so important to reducing inflammation and healing and my sanity. I think all drugs will have warnings and precautions to protect companies from people who over use or over dose. IF you are uncomfortable with melatonin you can try Ca
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