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EmilyK

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Everything posted by EmilyK

  1. My DH had two weeks of them at the start of school. Then we learned coxsackie virus was going around school.
  2. Any of the crystal or thai deodorants stones/sprays work well for odor. They are not antiperspirants, but you won't stink.
  3. That LypSyl sounds lovely. We use coconut oil on the lips but that product sounds much more convenient. I found the Aquaphor to be neither natural nor healing. My DS is often apologizing just like that. I feel awful for him and like you marvel at how much he manages everyday. I agree we need to step back at times, and I find I have to be very deliberate about doing so. But that space allows me to see a lot of success I might have otherwise missed. Emily
  4. Will they check for other infections like mycoplasma and lyme? We're waiting on our son's results for those. I'm not sure of MN resources but there is a thread on here for doctors all over the place. Beth Maloney also has one on her website - google Saving Sammy. Good luck with everything -
  5. Definitely. One of my sibs was thought to be bipolar but only ever had 2 mania episodes in an 18 month period subsequent to having had lyme and meningitis a few years before. He never had further episodes and my dad and are now convinced it must have been PANDAS. And then my dad and I were talking about how I constantly had strep throat until I got my tonsils out age 6. I distinctly remember at 4 1/2 going through a period of weeks where I was a hysterical nutcase over even ONE wrinkle in my tights or socks - falling down crazy screaming tantrums, those tights had to be perfectly smooth. And my dad and mom always used to marvel that their loud mouth little girl suddenly clammed up and got amazingly shy, quiet, and became a worry wort. I think my saving grace is that I was one sick kiddo with chronic infections and allergies and needing antibiotic for bronchitis, psnuemonia, sinus infections, ear infections at least 6 x a year. (I've managed to reduce it to 1-2x a year now with lots of diet care and supplements along with my allergy meds). Now go figure that I adopt my children and one has PANDAS - small world!
  6. Seems to fit if you ask me. My son's first tic was that type of cough. I'm glad your doc is sympathetic, and I'm sorry you're going through this. There's a ton of knowledge posted on this forum. I spent my first few visits reading and reading and reading. Good luck with everything.
  7. We're not getting them at this point. At times like this, I'm grateful for my egg allergy - no one dares inject me with a vaccine.
  8. I love your sibling story idea. DS 2 could also use that - same thing, best buddy got really bizarre and mean and they're only 10 months apart so typically close.
  9. He doesn't get running nose, sneezing, or swollen eyes; so he doesn't seem to have allergies in the traditional sense. He's been quite prone to off and on rashes of varying types since April. The allergist I took him to here in RI wouldn't test for more than a few suspicious foods since he doesn't present with more allergic symptoms. But I will add it to my list for Dr. B next week casue anything is possible. I like the hotel to avoid animal exposure idea. Funny, cause hotels for me are usually an allergic nightmare what with all that upholsterly and dustmites and various cleaning products/air fresheners. But if it's better for him, then I can up my allergy meds.
  10. I really empathize - been struggling this week watching my DS flare up again. Makes you want to stomp your feet and yell about it not being fair just like his little brother does!
  11. He's great about handwashing but really refuses the nasal sprays. One of his tics is picking at his teeth and gums which sure doesn't help the hygiene. I hope the Augmentin helps this be short-lived and we also started ibuprofin again. In 15 years I've never experienced fleas at the in laws but the last two visits have been not so savory as far as cleaning goes. I was freaked out and my DH went on a cleaning spree. I'm sure we offended everyone, but my kid's health is my kid's health.
  12. I sit writing this wishing to goodness we'd stayed home this weekend rather than the visit to grandma and cousins for AppleFest. DS was doing so well with the Augmentin and of course has a nasty flare up that started Sunday. Does everyone just stay home? DS adores visits to grandma's and who knows what on the farm or in the big crowds that caused this flare up. I'll be floored if we find he has no coinfections with strep when we see Dr. B again. No one was obviously ill but the family does have cats, dogs, a parrot, alpacas, chickens, and this time for the first time in my visit experience - fleas! Or perhaps it was nothing about the farm and everything about the crowds at the festival. Suffice it to say I am completely annoyed - poor kid should be able to visit with his family. What do you guys do? Emily
  13. My DS age 7 enjoyed this: strepmonster on storybird
  14. We had improvement in many areas but tics and rash and fever were cropping up the first two weeks. Now four weeks in, we're doing great.
  15. That's the one! Are there ones already printed that can be purchased or can I take that pdf and have some made? I will also check Beth's site for more materials. Thanks! Emily
  16. Something that really helped my DS with the bloodwork was when Dr B's tech put the elastic cord on his sleeve rather than his skin. He would get so worked up about that elastic pinching his skin! and liberal use of bribery....fries, ice cream, etc. One of his very first symptoms was frequent urination to the point of accidents at school when he'd been completely accident free since the age of 3.5 Well-meaning school staff kept reassuring me that it was no big deal for a K student, but I kept thinking it was highly unusual for him and something was wrong. That and the sleep issues, anxiety, and hypermotoric racing and bouncing all came on together. We checked for UTI but nothing of course.
  17. no - they had pictures of children and quick symptom details - lots of color and about 5x7" but that download you shared is also useful! thanks, Emily
  18. When we visited Dr. B I noticed nice large postcard size "flyers" on PANDAS that served to spread awareness and get the word out. Since I work for an education department and my boss has been attentively listening to my DS' case, we would love to get something like that to share with parents and with school departments. Does anyone know where those are available? I can also make something but I did want to see what was already out there ready to be used. thanks, Emily
  19. We hear the same from DS but a little less if we get the writing done on the computer rather than by hand. Part of his difficulty is sustaining attention plus slower processing speed when in a flare up. He does best in his room with quiet and good lighting and keeping his brother quiet and away. I keep trying to remind myself of how my brain just doesn't work when I have bad allergies or a severe sinus infection which is hardly a full comparison but the closest experience I have to empathize with what he's feeling. He resists using any bookmark or paper window to help himself focus on a section at a time, but I think it would help if he did. All students in his class keep a daily homework notebook that the teacher helps them fill out - it's got a premade M-F outline and they fill in next to math and reading following her model. That's a life-saver for us and I like how it teaches all the students to keep daily notes of what they need to do at home. They also have predictable homework reading routines each week, so he knows what to expect. I love LLM's office hours idea. Good luck!
  20. Oh we ran from Children's - thank goodness we're not Mass residents. We will not go back. Couldn't one get them on malpractice given that they took the - "keep doing what you're doing and see how he is in 6 months" approach? For a child who had a multitude of symptoms and was still sick despite the treatments we were doing? I've never had a dr and staff piss me off as bad as that one. 60 days to get strep titer results and I believe I only got them because the on call doctor taking messages actually called me back and gave me them over the phone. They never did mail them as promised and neither GP nor Dr. B has received written copy. I'm so sorry for those parents going to court but I'm not shocked.
  21. My DH was prescribed Mirapex which we were warned causes OCD symptoms. Watching his experience, I wouldn't recommend it especially for a child with PANDAS. He does better when he takes his magnesium and calcium.
  22. I haven't read the whole article yet but there are links to virtually everything that has been discussed on this board: methylation, taurine, sleep issues, NMDA receptor, narcolepsy, eating issues, anxiety, etc. And I think Dr. T's theory is not necessarily in conflict with what other PANS researchers are finding, just that the basal ganglia is affected via the tuberomamillary nucleus of the posterior hypothalamus. That is a fascinating piece of research. Look how connected histamine is to all the symptoms! And we do hear of some kids benefitting from the use of Vistaril. Thanks for posting, Emily
  23. Watching that knowledge regression is absolutely painful. Just finished homework with my son followed by online academic games - it's so depressing to see things he used to know that he can't do anymore. No wonder they tantrum. It must be so frustrating for them.
  24. That was my hunch/worry and Dr. B did a thorough set of tests on Sept 11th. So we see him again in October and we're waiting to hear. GP did a lyme test that was no good. I spent from April to Sept trying to get someone to test him thoroughly for Lyme and other tick borne diseases, and we lived in the woods in RI - should've been a no-brainer!
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