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Hayley

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Everything posted by Hayley

  1. So happy to hear your good news. Would you mind posting what your treatment was to get you to this point (and how long it took to see results). I know each child's story/response is different, but I do love the encouraging stories! Hope all remains on an upward swing for your family!
  2. Is anyone else baffled by the fact that this isn't getting any media attention? I really don't understand it.....
  3. I sent a private message to the FB page admins and they are exploring whether anything was in progress or if this is something they'd like to pursue. Wondering if we could appeal to the OCD foundation or another established organization that relates to our cause to be a point of contact for this. Has the media covered any of this? It seems hard to believe that they would not have picked it up by now locally at least? Anyone in Boston know?
  4. I talked earlier today to a friend who is a former journalist and PR professional. She's been very involved in the Lyme awareness movement (she has chronic lyme that was undiagnosed for 18 years) and she and her husband run a PR agency. She (as I) was surprised that the local media hasn't been all over this with cameras at the hospital, etc. already. Her feeling was that there needs to be a hook and that the headlines should focus on the jaw dropping headlines we hear/see in the ads for the 11:00 news (e.g., "child with Autoimmune Disorder denied proper treatment and taken from parents at hosp
  5. Wonderful to see that the community is keeping the momentum going even with Beth and the family under gag order. There was a suggestion in the comments on the Boston Children's Hospital FB page about setting up a petition through change.org to get Elizabeth released to another facility of the parent's choosing. I know the suggestion was by someone initially defending the hospital -- but who seems to be increasingly sympathetic with the family/cause if not fully "getting it" -- but I still think idea has merit. Since they are under gag order, I know we don't really know for sure what
  6. My DD7 has always been a kid who has needed a lot of sleep and we know her behavior (even pre-PANDAS) always slides when she is tired. After doing really well the past three weeks on a treatment dose of augmentin, we've had a rough week and we're trying to figure out how much of it is sleep and/or if she could be flaring. Last Sunday evening she had a wild day (her birthday party) and a late night (friends stayed late after the party). We suspected we might pay the price, but figured we'd take the chance given she was doing so well and she was really looking forward to the party. Thorugho
  7. We were told by the pharmacist that the liquid augmentin should be rifilled every 9th day to avoid it losing potency. In fact, we find that we really need a fresh bottle (even refrigerated) more like every 8 days. Just now switching to picking up the script refil once a week.
  8. We're still pretty new at this, but we have kept it simple with my DD7 and said that she had an infection and it gets in her head and can make her really act and feel not herself. We tell her that we're working with great doctors who work with lots of kids who have this and that they are going to help us get better (she feels the difference -- about a week after going on full strength abx, her words were: "I feel less fighty") and that we're all going to make sure we keep fighting the PANDAS together until we figure it out. Dr. L was really wonderful with her and really reinforced this message
  9. This story is just heartbreaking. I cannot stop thinking about this poor girl and her family. Just curious (and certainly not asking to breach any confidentiality if that's an issue), does anyone know how old this child is? I don't think I've seen her age written anywhere.
  10. So glad you are getting some answers and have a plan! I felt like a huge weight was lifted once we had a solid diagnosis and protocol in place! On the subject of frequent urination, my understanding from dr. L (and I hope I'm not butchering this with my limited science knowledge) is that there is a dopamine response that impacts the urge/need to urinate. My daughter wet the bed for the first time in her life (she was dry at night before she was out of diapers!) since presenting with PANDAS. It's definitely related.
  11. Glad to see I wasn't imagining this! Thanks! Sticking with liquid, but going to see about getting more frequent refills.
  12. I don't think I know anyone directly who can help, but I'm in the DC area and am happy to help brainstorm and will keep thinking if I know of anyone who might be a good resource for this. Please PM me if you all convene to discuss....
  13. My DD is on augmentin and responding well. She takes the liquid becuase she can't yet swallow pills (and doesn't mind the taste) so, at the pharmacy's recommendation, we refill every nine days due to the compound losing potency at about 10 days. Each time we cycle through a bottle, we feel like the last day or so of doses, she is definitely a little off and this last time, on the 8th day, I noticed that the augmenin (refrigerated) had yellowed a bit (it's usually stark white) and that evening she was really off. We are thinking that maybe the liquid is losing potency sooner than later. Anyone
  14. P. Mom, That's so strange. How old is your child? Is this low IgG, low IgA thing related to what Dr. T had called being a low strep responder? I keep reading about kids who have this getting sick all the time, but my daughter really rarely presents with illness. She literally did not miss a single day of school last year. Is she sick, but not showing signs because her antibodies are low or have we just been lucky (e.g., she's vulnerable, but somehow escaping catching stuff)?
  15. Thanks for the explanation, Peggy. PowPow, Dr. T had initially recommended some labwork (we had a phone consult while we were waiting for Dr. L) but then our Dr. L appt was moved up so we waited until we could see her to draw the blood. I think those were on Dr. T's original script, but she was in agreement with his recommended tests and added to them.
  16. After thinking we are seeing good progress on a high dose of augmentin, I got a call from Dr. L today saying that prelminary bloodwork came in on my dd and her IgG and IgA are very low and "she needs IVIG." We are meeting with her on Friday to review the labs and discuss IVIG, next steps, etc. When she called I was in a therapists office waiting room with dd (for a cognitive behavioral therapy consultation) and couldn't talk long or really absorb so needless to say I have about a million questions. One thing that struck me...I mentioned that we have United Healthcare and asked if we need to do
  17. Wednesday we had the good fortune to see Dr. L who (finally!) gave my dd (7) a difinitive PANDAS diagnosis and prescribed 500 mg 2x daily of augmentin. We are seeing some improvement, but trying not to get our hopes up too much -- cautious optimism! Tonight just before bedtime dd began complaining of a sore throat. Incidentally, she is not one to complain of a sore throat and, in fact, has NO positive strep test in her history (though Dr. L and Dr. T both have indicated that doesn't mean she hasn't had it). My older daughter (non PANDAS) has had an awful cough the last few nights so we've
  18. My daughter has been displaying PANDAS/PANS behavior since July 8 and was diagnosed with coxsackie virus the week following onset. Her initial bloodwork drawn August 8 shows no bacterial infections (strep, microplasma, lyme, etc. all normal). We talked to Dr. T about a little over a week ago and he said that he sees coxsackie as a trigger often. (interestingly, my daughter has NO history of diagnosed strep, but several cases of coxsackie -- always with sores only in her mouth). He also suggested that my dd might be a low strep responder so there certainly could be strep there somewhere that w
  19. So we met with a new psychiatrist today who has seen a number of PANDAS patients and generally seems very knowledgable. Three things have come out of it that leave us looking for feedback: 1) she does recommend starting a "microscopic dose" of zoloft to help lower DD's anxiety. We are nervous about this given all the negative things we've heard about SSRI's and PANS kids, but certainly woudl like to alleviate the anxiety level for DD if possible. For those who are using Zoloft, what is your dosage and woudl you recommend trying it? 2) she questions the possibility of a "Megavirus" given w
  20. We had a phone consult re: my dd yesterday with Dr. T. He was wonderfully supportive and thoughtful and overall very helpful. He does feel she has PANS and is trying to help us figure out what the trigger is so hoping to get some answers! She had been on Azithromycin on and off since August 8 (5 days on, five off, five on, two off before I got the doc to raise her to 7ML from 6 and make it ongoing), but only on her 8th dose today straight and her progress has been up and down (we had a good up phase before going off the last time and she's still not as bad as she was at her worst, but is
  21. We have a homeopath who did CRT on my oldest daughter (not PANDAS) for ear infections several years ago and I also just recently heard about the positive effects of neurofeedback. Trying to figure out if either is worth pursuing at this time for my dd who will be 7 next month. We're still pretty new with this all, not even dx'd difinitively due to normal bloodwork/no documented strep. First symptoms started 7/8 and while we started Azith 8/8, we were on again off again due to a neuro who didn't know her stuff. We are just now (thanks to my pediatrician!) getting her daughter on a stable c
  22. FWIW, NIH wouldn't take my daughter for the study becuase she did not have documented history of strep I do have to say, as I'm looking back on old emails (I haven't been able to copy and review her medical records so I'm going by old emails wehre I mentioned my kids being sick), I can't help but wonder if some of her past coxsackie diagnoses may have actually been strep. She only ever had sores in her mouth (never hands or feet or even outside her mouth) and they never did a strep culture when diagnosing coxsackie. In any event, coxsackie seems to be a trigger, but can't help but wonder what
  23. what dose was your dd getting on the "on" days, and how much does she weigh? She weighs 54 lbs. She was initially on 6.25 ML @ 200MG/5ML so I guess that's around 250? When she just got bumped up (starting THursday night) we increased to 7ML at the same concentration. Thanks all for the thoughts and feedback. I'm scheduled to talk to my pediatrician on Monday and hoping to get her to adjust the rx until I can get to Latimer. Worst case scenario, I have a phone appt. with Dr. T. on Thursday and am hopeful that he can either rx or advise my pediatrician to do so. I'm hoping that there will
  24. PR40- What PANDAS doctors have you seen that turned you away? They think it's not PANDAS/PANS? Has she been on antibiotics?
  25. As some may recall, we had a doctor put my daughter on five day off, five on Azithromycin. We got her back on (only with a five day dose though we are working to get our pediatrician to extend it) Thursday night (so she was off for about 60 hours). She was pretty good friday and yesterday morning, but then went to a party where she had some anxiety and it set her off for the rest of the afternoon/evening. We felt very discouraged because we really thought she was making progress (we hadn't had emotional lability/rage since the prior Sunday and even that was mild. She had an awful evening and w
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