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Everything posted by SSS

  1. Hopeny did you pulse the Hopkins Art?
  2. Hopey How are you? How is your daughter? Tried to pm you awhile ago to say Hi, think your mailbox is full here. Don't know what to say about the Claritin- strange!
  3. Hi- If you are asking: is the repetitive questions over and over again, and seemingly fixated on a topic/ and asking reassurance questions over and over is PANDAS/ PANS/ OCD, my answer is YES. Can I relate? YES. A recent addition of the antibiotic Augmentin 2x a day has made this particular OCD issue 85% gone.
  4. Yes, my PANS dd has made references about relating more to being a boy- I can't explain/ write this well, but with hindsight, I think she was so uncomfortable in her own skin, she must have thought being a boy was easier. And, as she got older with school age friends, boys carry less emotional drama in relationships- simpler, more rough and tumble. And then there is the clothing OCD- girls have more expectations, crap in their hair, etc.
  5. I'm glad he's doing okay. Sorry about the school grief. We went to homeschool online with dd9 this year. Pretty sure a few times I wrote 'I'd never do that, impossible' on this forum a few times before, but here we are- and it's going okay.
  6. For fatigue/ weakness, it made me think of needing Mitochondrial support- carnitine/ CoQ10. Dd9 had a Genova ION test about 6 months ago (similar to SpectraCell test I think) and it showed she needed Mito support.
  7. And we only tried a steriod 1x years ago, a 5 day burst, it was horrific. If there is any infection underneath, yeast, Clostrida in gut (and you may want to look into this too, gut health, soon) it will flourish under a steriod.
  8. Just thinking a few things for immediate help: What antibx have they been on besides clindamycin? When I first put my dd on Azithromycin 6 years ago (daily) it was like a miracle- całm, level, etc. Last Spring, after having been off antibx for a long time, started giving daily Biaxin, boom! immediate calming. It was unbelievable. Both are a macrolide antibiotic, perhaps it was an anti- inflammation aspect (she's never had Myco P) but never had that immediate and gratifying effect with any other antibx. Also, yesterday, my dd9 had an accident. Long story short (she is okay) we ended up taking her off antibiotics yesterday (and today) and instead gave her Naproxen (prescript anti- inflam. like Aleve, I guess, but prescription from Dr. yesterday because of her accident) 250 mg 2x a day, and I dosed dye free Motrin off shelf 2x a day in between that- Completely calmed her down. She needs to rest her back, and today she sat all day and rested, off antibiotics and on these anti- inflammatories. Benadryl didn't help us the few times we tried it. Good thoughts, hang in there, maybe you can call your Dr. ASAP and communicate your dire condition (actual hospital visit) and ask for immediate change of prescriptions to try--
  9. Things are better here, but we had a wild episode a few days ago (just started Doxy for the first time, and it is actually going well, except the scene I'm about to describe) anyway, boom! PANS kid is out of control- little sis, Dad and me cannot get through, exasperated, escalate. I'll spare you details, but it's awful, verbal, going after little sis, etc. Everyone is angry, but I find clarity and in a very gentle compassionate voice I say, I am so so sorry you're having a hard time right now. I'm so sorry it's hard for you. Then in same soft begging voice I bribe: please, please take this Advil right now, come back with me for your epsom salt bath (given in master jetted tub) and I'll give you a big marshmallow. Come on, just come with me. Please. She yells no and some other insults for just a few seconds, but she knows. I broke through. She doesn't want to be touched, but the marshmellows I never let her have, the way out, she takes. Advil, the epsom salt bath, drink with Burbur drops on the side, time alone quiet with me, deflates it. I understand man to man coverage. Hang in there- are you treating infections, and upcoming IVIG should help, too---
  10. Your son is positive for Lyme disease. IMO, you don't need a Igenex Western Blot, but your treating Lyme Dr. may want to order co- infection tests (which are hard to show up in testing, and an experienced lyme Dr. will look at clinical presentation too and assess co- infection treatment).
  11. Wow, very powerful. I'm glad he is on the mend, good thoughts---
  12. P.S. Maybe it's time to get connected with a PANDAS/ PANS specialist / Integrated Dr. who better understands- won't dismiss you without a positive strep throat culture when child is clearing flaring with symptoms.
  13. I thought Lifeway brand Kefir is the one WITHOUT strep strain? My dd9 reacts to yogurts with strep strain, I used to give her Lifeway Kefir for this reason, but it's packed with sugar, by the way. Have you tried full dose antibiotic treatment? If infection is present/ activated, Azith. 500 mg 1x a week is not going to cut it. Yeast overgrowth- could trigger stuff, too....
  14. I think if Rifampin is 'working' for PANDAS/ PANS, it's because it is either targeting imbedded strep, or, Bartonella. Bartonella being a wicked infection, with very few options available to properly treat, Rifampin being one (paired with another antibiotic).
  15. We have also been at this about 5 years, and I (me, the know it all, ha ha) can still fall into 'this is behavioral' and 'my God where is the common sense?!' I also had the child who never, ever had a behavioral problem at school, but could lose it big time with me and little sis as soon as the car door closed at pickup. I have said, more than once when completely exacerbated at being verbally abused: 'You would never, ever speak to your teacher like this, so why me? Pretend I am your teacher!' Rough stuff parenting PANS. On one hand, I do think holding her accountable, being tough, not allowing if I can, may have prevented it from getting worse. On the other hand, when the child is gone and crossed the line, fighting it can make it worse. Finding that line is sooo tiring. And sometimes impossible. Hang in there- I am 'lucky', I guess, that my husband truly gets it- we don't judge each other- it's about survival at times. Maybe he gets it, because if he has a better way, hey man help yourself, YOU handle it then, ha ha. But seriously, he has seen the ups and downs, I do the research, I explain it, see what he thinks. He lives here, he sees first hand what's working and what is not. Things are better here- I no longer try to get other people (re: family members) to try and get it. I don't have to justify to them.
  16. We tried 2 different ADD meds while on a 'break' from tx'ing PANS and lyme last year: First med seemed to shock her system for a day or 2, then nothing. Psychiatrist Dr. said go up in dose (we had started low) tried upping dose 2 more times, same thing happened, I said forget it. 2nd ADD drug: immediately put OCD into nonfunctional. Very scary. Did not work for us. Back in treatment for lyme and co- infections with antibiotics, and ADD symptoms are very manageable- no more pacing around the house, finishes homework, sits down and watches movies, etc.
  17. Glad you are seeing Dr. B on Tuesday, hold on- It is possible to sign up online with Labcorp and Quest (most states) and receive copies of all tests online, sent to your email. Even old tests. I would see if you could do that, find his CBC drawn in August to print and bring to Dr. B. Unfortunately, it's not unusual to backslide when removing antibiotics for a PANS/ Lyme kid. Hang in there--
  18. Not sure what you mean by 'more toxic' I am assuming a CBC and liver panel has been done and all checks out. From what I have heard your lyme Dr. is very good, but I'm in N. CA. I did see an excellent PANDAS/ PANS specialist here (need a follow up) but we are also seeing a local LLMD, who doesn't normally treat children, so not sure I have referrals for you- I didn't want to seem like I was giving advice on next treatment step, not my place, just a guess from what you wrote.
  19. Uh, I don't really know, but here is a guess: Maybe you were treating the Bart (great the improvements) upped the art herb too high, it blew him out :-( Off all antibx, and detoxing, but the lyme Borrelia infection itself is now center stage. I dunno, but brain fog, word confusion, makes me think of lyme, which I am not sure you've really treated? Maybe add back in a lyme antibx one at a time, see if improvement starts for these symptoms.
  20. No real suggestions, empathy and good thoughts--- and, if she's sick (and agree with LLM, viral) why feel guilty or the need to push her to go to extra curricular activities? Maybe let her know she's got a viral infection, it's not making her feel well/ not herself, it's okay and just temporary, let her rest and not pass it to others. My dd9 caught a cold a few weeks ago (she's also on antibx) and it did 'ramp her up' not to rages (thank God) but yes, return of mean and verbal lash outs. I increased vit C capsules, Zinc, and bought Sambuca/ Elderberry they make Sambuca/ Elderberry gummys (wholefoods, they taste good) and Echinacea drops (didn't actually use, but now have them). Hang in there---
  21. Oh Smarty. In my blunt manner: please do more than the 2 weeks of Doxy! Please do at least 4-6 weeks. You say things are getting better (except residual fallout) do you think it's from Doxy? Do you think this is a brand new tick bite? Be very, very careful in the sun on Doxy. Easy to get a chemical sunburn from it. Sunscreen or stay out of sun if possible. You also want a hefty dose of the Doxy 2x a day. The Lyme rash is absolutely definitive: infected with Lyme disease. If it's brand new, that's the best news if you have to have it, but drown it out NOW with enough Doxy and duration. As far as school, my dd9 is now doing homeschool online through our district, w/ a very small class meet 7 other kids w/ teacher for 2 hours 2x a week. Astonishing, it's going much better than I thought possible. Although we are re- treating Bart, God help us. But I couldn't take the stress, flaring from others, bad friend choices, possible/ past bullying, etc. we will finish out the year/ 4th grade this year and go from there. Of course I don't have an outside paying job, either. So it was possible. Hang in there-- S
  22. An old post of mine here^. We learned we had tried to go off the risperadone too fast that weekend. This is my fear with these drugs- they take over part of the brain functioning, and waiting for it to 'relearn' how on it's own after removal.
  23. This is a serious case (from what you are saying here) of CLOSTRIDIA / c. diff extremely high bacteria growth (not fungi) and you said diarrhea for 2 months. Flagyl or Vancomycin (there is a 3 week protocol) Flora Star (sacc B probiotic) Needs a Dr. to see this test- help--
  24. Yes, my dd would say the same thing at that age (while she had untreated PANDAS/PANS) It went with major OCD issues around clothes (I thought it was sensory). I wondered at the time if she was just so uncomfortable in her body w/ anxiety, etc. that she thought being a boy must somehow be easier. And no, I wasn't forcing frilly lace dresses. Not wearing the exact same thing over and over and over again, just a different clean shirt, was what I was going for- we had very wicked OCD on clothing. Now, at age 9/ 4th grade and in a new flare, and while off treatment last year in 3rd grade, she friends the troubled ADD boys. I don't know how else to put it. Public school has flared her after a wonderful summer back on treatment, and she is OCD about a boy in her class (they are friends) and he has his own set of issues- so we are switching to homeschool online while continuing treatment. This new flare also has new odd body movements. Is your daughter on antibiotics? Mine is again (for the last 6 months) but still flared/ regressed with PANS. So we are pulling her out of the public school. She was also bullied a few times last year, this unhealthy relationship with this boy, the flare/ regression= done. And I believe I just claimed recently I'd never homeschool. Ah, gotta love PANDAS/ PANS.
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