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Found 6 results

  1. Does anyone know any ENTs who will remove tonsils and adenoids in Washington state or British Columbia, Canada for kids affected with PANDAS
  2. Hello all! This particular topic is worrying me and I would welcome any thoughts, ideas, experiences you may have. My ND feels strongly that DS10 should have his tonsils out (although that is probably a very slim possibility as we do not have an MD or an ENT on board). She believes his tonsils are harboring a lot of infection and this is preventing him from progressing in treatment. DS is positive for lyme, tested negative for co-infections, exhibits severe motor and vocal tics, slight OCD, no "typical" lyme symptoms like joint pain, brain fog, etc. A quick background - DS has never had strep throat. After tic onset in September 2013, he was positive on a throat swab for strep in October 2013, but no other symptoms. He was put on amoxicillin for 6 months. He had flares of symptoms over the winter, subsequent throat swabs were always negative. He did have the ASO and antiDNAse tested but I don't know the numbers. Because he didn't test positive for strep again, PANDAS was ruled out by the neurologist. Instead, he was diagnosed with a 'movement disorder' - i.e. tourettes or something. In May 2013 he tested positive for Lyme. Put on Augmentin for 6 weeks, no real changes in symptoms. Then clarithromycin was added, great improvement for a week, then back to previous levels. Did that combo for Sept/Oct/Nov 2014 (+ nystatin in Nov). Dec 2014 started azithromycin (in place of the clarithromycin), very slow improvement over 3 weeks. Tried tiny dose of grapefruit seed extract for yeast over the holidays - immense exacerbation and we stopped everything. He developed a horrendous screaming/swearing vocal tic and became hypersensitive to everything, panic attacks, aversions/phobias. He's better now, still some sensitivities (tics triggered by his sister's noises) and motor/vocal tics (screaming, a little bit of swearing) still there. Have been treating for yeast with nystatin and we are on a half dose of azith while we start the Cowden protocol for Lyme. Now if you've read this far, does it sound like we should consider tonsillectomy? His tonsils appear fine, but I know they can look okay but still not be. What could explain his lack of progress? Yeast? wrong abx? maybe abx don't work for him? (Don't get me wrong, I really like our ND, she's very experienced in treating Lyme and has studied with Dr. J. She's basing some of her recommendation on Dr Klinghardt's treatment of PANDAS. I'm just worried things may not go well with it for DS, but also worried that we're missing something by not doing it....) Thanks for reading
  3. For the past 2 months my tonsils and throat have been a wreck. Backtracking a bit, it started after my trial on valtrex (went very badly). Pain in ears, then nose, then tonsils. They concluded my tonsils were infected b/c of their size (different sizes too), pus, and very inflamed. I was put on azith for a few weeks which helped for 3 days, then omnicef which gave me c-diff, uti, and yeast infection (still battling c-diff, still on flagyl). Anyways, my throat, mainly vocal chords, are in horrendous pain. I can't sing. And that is really messing me up. Hard to talk, to do anything and I've never had it this bad in my entire life. I am a singer-songwriter, so not being able to do the one thing that can stop the ocd and brings joy has been heartbreaking and I fear the worse. The doctor I saw wants to take out tonsils b/c they are so inflamed BUT he said first we'll try acid reflex treatment. I've been on prilosec for a few weeks, 2x's a day, and I am getting side effects from it plus has not helped. It increases benzodiazepines in blood stream and I've been a complete zombie stuck on the couch. We tried nasal spray for constant post nasal drip (it's an antihistamine) and over time it was drugging me really badly as well so I had to quit. I am insanely sensitive to everything medicinal or supplemental, it most certainly must be a clue as to what is wrong with me, I can't tolerate much of anything. Other things tried: manuka honey, gargling salt water.......... Nothing is helping and the post nasal drip seems to be getting worse along with my throat. Still scheduled for tonsillectomy if things don't improve. I'm only worried about getting my singing voice back. Some mornings I wake up and can't speak. Very hoarse. Any thoughts?? P.S. Last night the diarrhea returned and it looks like c-diff so I'm back on flagyl and started probiotics that were recommended here on this forum. I don't know what is going on with my body.
  4. Hello, We just had a T&A for both daughters 4 days ago. We have a 7yoDD with PANDAS and a 6yo DD strep carrier. Both girls still get strep while on abx. I've been reading through the posts on tonsils and see that some of you have used steroids after the procedure, some clindamycin, and others did other routes. Can people chime in with what changes you made to meds after the T&A procedure and how you thought that change worked? I hadn't thought about steroids although they have always been helpful to my DD as well. We did not do IV abx and I am now wishing we had. Since the surgery, PANDAS DD has been a sleeping machine and I'm wondering if she also had sleep apnea as others have indicated. We had not done a sleep study. Our DD has had PANDAS for 5 years. Thanks, FA
  5. Ok, I was browsing some stuff about Tonsils and why Strep was so hard to get rid of and came across a bunch of videos on Youtube. One Doctor was removing a huge stone through surgery and was saying many have Tonsils all wrong. That the purpose of the Tonsils he said is to help filter toxins, bacteria and viruses. He said that stones can hold bacteria. He said that stones in the tonsils can hide the bacteria from swabs. He also said that only the stones should be removed and not the tonsils. Here is a DIY Video:
  6. Hello, My 5 yr old b/g twins have struggled with strep since last summer. It caused my son to be in the PICU with a collapsed lung and strep pneumonia. Since then his twin sister has had it a few times. They both have had positive throat cultures taken in February. His behavior is fine, while her's has changed. My dd behavior has gotten out of control over the past several months and I came across PANDAS when researching strep and problems in school. She can’t remember things, she is irritable, unreasonable and angry. Large pupils- is that a symptoms too? My dd is having a T & A on Monday. She is on a 26 days regimen of Azithromycin. Do I need to ask for a biopsy of her tonsils (large and cystic)? What do I need to be doing to help her get better? Does she need to be on anything else? Should I have her tested for allergies too? I am waiting for a referral to a PANDAS dr at Stanford (we live in CA) Any advice is welcome, this is all overwhelming…
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