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SSS

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Everything posted by SSS

  1. Well, what I should do is make sure she's off antibiotics for the next 4 weeks before LLMD appt., and fork out the money to finally get her the Advanced Lab test. Thanks--
  2. Hopeny, have you heard anything on this yet? I booked an appt. with my dd's LLMD for her, about 4 weeks out, and it's been at least a year since we've been there, going to have Myco P test done, wondering about this test, I like the price. Thanks--
  3. Just a few things that popped out at me, my personal .02 cents: She is getting steroids? (IV solumedrol) This can be very detrimental to someone with an active infection, as a steroid shuts down the immune system and therefore allowing infection(s) to flourish. I didn't understand the WB results how you posted it: ** meant positive or nothing there? Regardless, my gut says tick borne infections based on what you wrote. When I was on Doxy, I actually got my hands sunburned through the car windows, and my face burned from briefly outside. It is not a typical sunburn, more like a chemical sunburn, and was miserable! Took weeks to go away, face looked like a clown, then peeled for 1 month. The hands hurt for a good while. You say dairy free, what about gluten free 100%? That can ease inflammation. Again, my .02 cents, a good LLMD to start over again, get on a combo of antibiotics (off Doxy for summer) concentrate on gut health, slow the rest down- too many cooks in the kitchen? Hang in there---- you have done amazing getting her to the specialists you have. P.S. My LLMD believed once bacterial infections were under control, the body could then take care of/ handle viral infections the body may carry.
  4. Are they identical twins? I guess the whole DNA comment throws me a bit, as I get defensive when these childhood epidemics are labeled genetic. The difference between my PANS dd (who I was told had ODD, incidentally) and my other 2 non- PANS healthy children is literally night and day. Can you do a trial of antibiotic and Motrin, recording any changes? This helped us 'see' in the beginning (Treatment dose Azithromycin for a month, Motrin 2x a day, I think) And ironically, helping me 'see' PANS again 4 years later on Biaxin. For us personally with my beautiful PANS child, it has been a mixture of diagnosis and treatments in an earnest attempt to help. I used to think: I fix the PANS, everything is 'normal.' It's up to me. I have to find the magic treatment choice. And for some, thank God, that is true. For us, there really does seem to be some overlap of whatever you would like to call it: spectrum disorder, ODD, bipolar, ADD, 'something'. But we trail a path forward the best we can.
  5. I will never forget when I first found this forum (after being on biomedical healing autism forums for a few years) I read back pages here literally all night, and thought: My people! From my planet! One great thing I've noticed this last year with my husband and I: We've gained acceptance. More so me, which in turn makes his life easier ;-) More than a merry-go-round, I find more peaks and valleys. The valleys are not nearly as dark as they were, though, and I've learned to not try and figure out the future, and take it day by day.
  6. My opinion (just me) I don't see Enhansa as an immune regulating supplement. I use it everyday, I use it as an anti- inflammatory, anti- yeast. I did a protocol with it some years back w/ dd, ramped up to a higher dose w/ vitamin C, and it pushed out some viral issues for her.
  7. Things have gotten a lot better as far as products now be labeled in the tiny print on the back- if it doesn't actually say 'gluten free' I usually don't buy it, or look it up on the Internet. I bake items from the website 'Elana's Pantry' and own a few of her cookbooks- I find her recipes kid friendly and easy/ not a ton of ingredients. She uses a lot of coconut oil, almond flour- Also, Udi's bread products from the grocery store for dd.
  8. I have, I originally started my dd, now 9, to 100% gluten free, dairy free, and then quickly soy free (when she started demanding and begging for soy yogurts and soy cheese 4 weeks after removal of gluten and dairy) when she was 4 years old. In the past 5 years, we went off the restrictions twice. We are now back fully to 100% GF/CF and soy protein free, so that should tell you how it went ;-) Dairy leaves the body fully in 3 days, so dairy you should know fairly soon if it's an issue. Gluten is more insidious - can take months- 3-4 months, and, it's sneaky in products- when you think you are totally gluten free, you'll realize the Heinz ketchup your kids been using every day isn't really gluten free... The last time we re-introduced dairy and gluten, I did it with Trienza enzymes, which have DDPV enzyme which is suppose to help digest the dairy and gluten proteins. It seemed 'okay' for awhile... we went some months--- but we noticed school work was brain fogged. Then, she really was getting to eat crap. Back to 100% we went (and no fight from her! She agreed) And we saw clearer thinking, and the diet is so much healthier now. Ridiculously expensive to eat well, but better nourishing for her this way.
  9. Thank you-- We've been through so much treatment over the years (preaching to the choir, I know) But I am shocked with this improvement with Biaxin as mono therapy. Maybe it's because there was so much bacteria floating around? :-( It reminds me of the very first time she did Azithromycin, at age 5, huge WOW, but then regressed on it at 4 weeks. That started our whole PANS then Lyme journey. She's had so much Azith., she now seems immune to it/ not helpful. I prepared my DH (who obviously also sees the improvement) we may be heading back to the LLMD for her... it's hard to know the right thing to do, but with this advancement (fingers crossed to hold) I guess the answer is in front of me. But she is famous for regressions/ things no longer working or holding. But to see her content: is gold. Thanks again.
  10. Hello- I don't want to make this long- My dd has never had a Myco titer pulled- never coughed in her life really, either, although dx'd w/ 'lung infection' at age 3 via a chest x-ray at an ER visit for a bladder infection. She's been off all antibiotics and treating herbs for a long while now- no prophylactic. Younger dd, non- PANS, gets lung infection/ wicked cough 3 1/2 weeks ago. 5 day Z-pack did not clear it, now younger non- PANS dd on treatment dose Ceftin for 2 weeks to try and clear her lungs/ low grade fever. Meanwhile, my PANS dd flared- increase OCD, cannot settle, and we've had brain fog type going on for awhile....but don't know if that's her 'normal'. She has no outward illness symptoms and no pain. So, I had leftover Biaxin script of hers from LLMD treatment, (not expired) and start PANS dd on Biaxin at treatment dose, and, Wow! Improvement in 1 day- happier, engaged, calmer, more content- no herx really- a Wow (it is day 3-4) Sooooo--- why? Could it be Lyme killing, putting it in cyst form? Strep killing, Bartonella, Myco P? Can you be infected with Myco P and never cough or have runny nose? I welcome any input, and thank you.
  11. Thanks Hopeny, looking forward to hearing your take on it.
  12. Her son shows probability for celiac. I'd say 100% gluten free is pretty important. Right up there with taking meds. I pack my gluten free daughter's lunch. Udi's makes a great GF/CF/SF sandwich bread that you can eat fresh- I keep 1/2 the loaf frozen, other 1/2 thawed on top of fridge, keeping it fresh. They also make bagels, muffins, etc.
  13. Totally get how hard it is. Totally. For my dd and myself, bloated tummy means yeast. And constipation.
  14. LOL on the boyfriend. Cannot wrap my head around that one yet! My youngest, NON PANS, healthy and neuro typical, came down w/ a bacterial cough. Z-pack didn't clear it, now have to go back and ask for something different. Great. Wish me luck, it's like asking for crack, stresses me out. My point: my PANS dd is totally reacting/ flare- and yet zero outward symptoms of being sick. No cough, sniffle, nada. But she is ramped up. So, yes, crazy, but that's the wild PANS deal :-( My PANS dd has been off antibiotics for awhile, but just put her on Biaxin to hopefully pull her out. (And when we first got PANDAS dx, I had every member in this house get strep titers pulled, too.)
  15. Sorry- but he's not gluten free :-( It HAS to be 100%.
  16. Thank you for sharing, and I am very interested on how the Bravo proceeds for you-would love to hear updates. I also have gut issues (and my dd) and it has been a long process, special diets, parasite and yeast treatments, etc. Good thoughts to you---
  17. Who has the magic perfect poo? The supermodels with the incredible flat stomachs? You can exercise day and night, but for those perfect board stomachs, it reads young clean flora to me. How is the new sample tested, and what for? Because something so dirty, has to be immaculate. That would be my pressing point.
  18. One thing I liked about the book 'The Explosive Child' was it asked the parent to break down the few things you will NOT accept no matter what- what few things are you willing to 'die on the cross' for? Has to be only a few big ticket items. When my dd was much younger and things were darker, it was going to school. If that meant you had to wear your same OCD shirt every day, okay, but you are going to school, I will not bend on that one. It sounds harsh, but I'm glad I did that early, as she now has this instilled. Hitting or hurting another, no way, no how. That's about it, the rest I can't always control, and the book has further suggestions.
  19. I would get my phone. That's a line crossed. I know what you are writing about. I know the absolute dread when you start disciplining, or make an ultimatum, and there is another part of me that knows the child is 'too far gone', and they couldn't be rational at the time no matter what I say. Fortunately (I guess) our time periods for this are very short now. Sometimes, I just choose to be quiet- and when asked why I'm not responding, I simply say: I cannot when you're speaking to me like this, and then I stay quiet or it escalates further. I just won't participate. Literally I stop speaking and looking. This can pull her out. Or, changing the subject rapidly sometimes will still work.
  20. I hate to say this, and certainly my perspective may be tainted, but when I first read this and saw vasculitis, I thought: Bartonella. Then you wrote it happened day 7 on Omnicef, maybe that is bringing it out? Here is a link saying Bartonella skin issues often misdiagnosed as vasculitis: https://sites.google.com/site/drjoneskids/tick-borne-diseases/ba Just wanted to mention the possibility...
  21. Well, sounds like you already have a great diet in place :-) And an excellent new Dr. What did he say about doing homeopathy at the same time? We tried constitutional homeopathy with one of the best, it wasn't our ticket and didn't work out. Also tried CEASE homeopathy, no go. However, it was before we found PANS and Lyme, too. Hang in there!
  22. Oy vey :-) Great info. you got, now to cut out sugar and carbs... Much easier said than done, I know.
  23. Hi- Red ring around the area you are describing indicates yeast, from our former bio med Dr. and others. Just wanted to chime in on that part--
  24. Yep, it's a wild ride, only folks here know how wild. I'm sorry you are declining- anything we can do to help? Sending good thoughts to you. I have some sort of flu right now, and you don't know how good you really feel until you really feel bad. Ugh. Then the lovely paranoia when you know too much rumbles around. Please don't beat yourself up. Especially about the past. Which is quite rich coming from me, as purging resentment, letting go, mindful grateful thinking is a daily strive here for myself. But that woulda, coulda, shoulda is no good. Lastly, my famous story when someone here first gently suggested Lyme: Well I thought they were crazy! My completely sheltered, never been camping, never owned a pet, CA little girl? Huh? I'd never even seen a tick (no memory of one.) Hang in there Nicklemama.
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