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Everything posted by Sirena

  1. Motrin helps us too--also Tagamet for antihistamine action, NAC or liposomal glutathione for liver support. Activated charcoal... alkaseltzer gold
  2. So now DH and DD also have Lyme & Co diagnoses to go along with PANSLyme/Babesia DS. DD also ASD...I would really like a little vacation from this craziness. Dog getting tested next--and I'm willing to bet she'll turn up positive too. Ughhh
  3. Way to familiar...our journey started with strep and negative "standard" it/Tim Lyme tests and lots of treatments over a year until we finally found and started treatment for Babesia duncani, bartonella and Lyme. Babesia ca lead to nasty horrible PANS. Cunningham and full igenix panel was well worth it for us.
  4. Way to familiar...our journey started with strep and negative "standard" it/Tim Lyme tests and lots of treatments over a year until we finally found and started treatment for Babesia duncani, bartonella and Lyme. Babesia ca lead to nasty horrible PANS. Cunningham and full igenix panel was well worth it for us.
  5. Hi Jan251, Thanks for your reply. IVIG has helped, but we are still not out of the woods. Fortunately we haven't had issues with florastor. It's been interesting that everyone in our household got the flu this winter except our PANDA/PANS kiddo.
  6. DS8 is 19 months in since the sudden onset. We've had multiple abx treatments, tonsils removed, IVIG, high dose pulse steroids, 10 weeks of partial hospitalization for ERP therapy, another round of diagnostic testing. Positive for D1 antibodies on Cunningham panel, positive for Babesia duncani, and lyme. Some indication of bartonella. Treatment for lyme & co-infections. Another HD IVIG...more Babesia/Lyme/Bart treatment. Added LDN...switching out abx for Lyme&Co. Overall better than last year but aggression and liability issues still. Still getting one or two red hot ears without explanation (maybe lyme?) frequently. Still dealing with enuresis. Currently on minocycline, cefuroxime, mepron, ibuprophen, LDN, glutathione, probiotics (visbiome & florastor), loratidine (antihistimine), vit D, BLT drops, phosphotidylcholine, multi-vitamin. So the question is...do you think it is time for plasmapheresis? Thanks!
  7. Hi Newbie, I have a couple thoughts on getting the compliance/participation. It seems that often our kiddos' "fight or flight" reaction is hypersensitive-hyperactive and beyond their physiological control, so anything that might trigger it is going to get you into the battle zone rapidly and unwittingly. So, preparing ahead by thinking about how to keep kiddo soothed will help. So, if you've had to resort to calling the police, your going to have to prepare in the future on how you can make the experience 5x more fun/positive than however "bad" it seems to him. So, while in a normal situation being over the top accommodating would be looked at as encouraging bad behavior, here you are dealing with a brain on fire that doesn't work normally and can't be expected to handle even minor stress well. With our kiddo, when we started this mess, I took him to buy a small lego set after getting his blood drawn. He's Lego crazy, so this helped. Little did I know how many blood draws were to follow!!! But we have kept up this tradition and he earned larger Lego sets (or playmobile) when he had other procedures like IViG, MRI, EEG, etc, etc. Often he will pick out the gift ahead of time so that you can use the anticipation of something good happening immediately after he does what you want him to do. I hate to think how much we have spent on Lego, but it has REALLY helped him cope and find an "upside" to the whole mess. One other thought, these kids often secretly blame themselves for being ill/behaving badly and it's very important for their psyche to externalize the illness. So, you might want to share that you know it was the PANS itself doing a number on his brain that made it so hard to get into the car to go to the doctor, but that you understad that it was not "him" misbehaving. So, you are going to devise a plan to help fight the PANS/Bad antibodies/or whatever you call "it." You can get his input or surprise him. For example, I'm imagining a colorful gift bag with balloons attached and perhaps some small (dollar store?) gifts and kiddo gets to open the first one when he is buckled in the car. I'm sure you'll know what your kid is likely to respond to positively. Lastly, giving kids lots of opportunities to feel "in control" in this crazy situation if helpful to them and the situation. So, choices like, "Do you want to wear or not wear your coat in the car?" Would you like the radio on or off? Do you want to take the ipad or not? They need empowering in this difficult situation...Hugs, hope something in this helps...
  8. Another lab to consider for testing is MDL. Our LLMD uses and likes their quality and it is covered by our insurance (and maybe yours?). Definately get those co-infections tested. Don't forget mycoplasma too.
  9. We are seeing Dr Braccia in Harleysville PA at Haverford Wellness. Very patient and compassionate. Get pandas/pans. Seems middle of the road in that uses abx, supplements and herbs. Very good staff.
  10. Hi all, Sorry I missed those of u that went-I tried! My take away on icing was as contributed above 2mg/kg administered over two days. Usually also with support media. There is a FB pandas pans ivig page with a good following--fyi
  11. I imagine you've already tried this but how about an iPad and headphones with games to go? Might help him cope. And maybe a massage therapist before leaving to help soothe and reduce the threshold for triggering full on fight or flight...just trying to think outside of the box.
  12. annn251, Did Igenex lyme wb tests have indeterminate bands? Did you do any other coinfection tests through igenex? Like the babesia panel?
  13. Can we start a Babesia subgroup???? Our DS is in the 3rd month of Babs treatment and going for IVIG tomorrow as his encephalitis is bad (CAMKII was 231%). He is on mepron and clindamycin, plus glutathione and probiotics. Sirena
  14. One more thought, you might also look or an ilads.org trained llmd. The lyme docs seem familiar with pans/pandas/autoimmune encephalitis--at least more than most...
  15. I agree about the ibuprophen. Perhaps if u do end up going, request an inflamatory marker panel (including C reactive ptein and sed rate, etal). If these come back elevated it helps docs "see" that the problem is due to the infection/inflammation...
  16. I came across some good sources on this and discussed with ent who said it was a good idea...we've used "Great oral Health" brand oral probiotics for kids dental formulation. I like this one bc it has more strains than this Now version. That being said, u should check w your doc bc there are some "good" strains of strep in the mix which might not be good for particular cases. Kids like taste too...
  17. I'm just wondering again if anyone is going or if I'm the only one! Sirena
  18. Okay...adding pet check to my list..guess ill have to screen for lyme too
  19. For what it's worth, we did do tonsillectomy and got kiddo 85% back--until next infection kicked things up again... igenix testing very helpful and I hope you got full set of them...
  20. Could be neuro Lyme, Babesia, or anti-neuronal antibodies...we've had all kinds of weird neuro stuff. Are you using any anti-inflammatories? They might help... Which Babesia are u dealing with?
  21. Jhu has taken over all children's hospital in St Pete and I have heard they are not pandas friendly. I was also not pleased with Rothman bc we traveled far and ended up with a fellow instead of the experienced doctor --we switched. Another friend ended up switching to a Dr B in Florida. Good luck, getting the team is a hard and $$$ challenge.
  22. With our doctors okay, we do ibuprofen 3x a day daily for over a year now...DS does get frequent blood work and I worry about risks, but then again, if its helping protect his brain-which it sure seems like, then we will use and continue to monitor. We have also added liposomal glutathione from llmd, opc chews, vit d and phopha tidy choline.
  23. Air hunger feeling is associated with Babesia infection-maybe thats a clue. There are multiple strains so you need to test for for more than one--such as the lyme co-infection testing from Igenex...Babesia is treated with antimalarials and antibiotics. I hope you feel better soon.
  24. Biologically, this doesnt make much sense to me (a biologist) because red blood cells stop using the Krebs cycle for much of their existence and many of the other helpful and needed gut flora dont use the Krebs cycle. So, more specific information is needed...
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