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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 hospital....grandparents escorted from trying to see her...") but that with those two pieces in place, it should be an easy sell. Her immediate suggestion was some kind of press release that could be distributed to national media outlets and locally, ideally tying local stories to the issue in Boston, particularly because the Wray family has a gag order and details of their case can't be featured. E.g., If a family close to us in DC can tell their story about being denied treatment by a major medical institution (then being diagnosed/treated by another well established institution), the news features that story as a lead in to what is happening in Boston. Do we know if any media folks had been involved and/or press pieces generated prior to the gag order? My friend is already overextended and can't offer to take on this project, but did offer to review/tweak/advise on anything we might have written and/or write probono. Assuming that by now something of this sort is already in motion, any idea who might be involved that I could contact to see if they want to take up my friend on this offer? Please PM me if you know of anyone.
  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 their exact wishes are, but it does sound like getting her transfered somewhere would be preferable to keepig her at BCH. Seems like this could run parallel to the media efforts. Is there anyone close enough to this to know the family's needs/wishes, but far enough from the epicenter not to be included in the gag order or to put the family/Beth in a position where they could be accused of violating it? Any attorneys out there who understand gag orders enough to guide us through this? I was just on change.org's website and it seems to be down (though I can't imagine they are out of business), but there are other online petition sites incuding www.ipetition.com. I know that getting Elizabeth moved to another facility doesn't reunite her with her parents, but at least it is a step towards getting her the appropraite treatment.
  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. Thorughout the week she's had a lot of ups and downs, very emotional, weepy some evenings and/or early mornings, hyperactive at others, but not really too bad. She's had a few little tantrums, but we've felt like overall they were pretty age appropriate and any resemblance to a PANDAS rage/meltdown were more her testing limits, especially since we've reinstated some rules that had gone out the window when she was really at her worst. Whereas she was really clearly out of control of her own behavior during the worst of her original PANDAS flare (e.g., if the flare were over wanting extra cookies, no amount of giving in would stop the rage once it started), in this past week's tantrums it seemed she was acting out for a reaction (e.g., if we gave her the extra cookies, she'd stop). Then this morning she was just really off the wall -- wouldn't take her medicine, wouldn't eat breakfast, kicking, throwing, name calling, wild eyes, etc. We haven't seen her like this in well over three weeks (before she started at her current dose of abx. and this definitely felt more like hte rages we'd experienced before her medication was in place. She had gotten up super early this morning (thanks to her little brother) and was clearly tired. She does not seem to be sick at all though her sister has swimmer's ear (not contagious, right?) and a cold and she's in public school so of course she is exposed to stuff every day. My question for you all is this...when your kids are NOT flaring, do they have bouts of regression into PANDAS behavior related to exhaustion? How do you handle it (aside from heavily monitoring sleep which we try to do, but we also want to let her be a normal 7 year old). If not sleep related, how would you handle it given she's already on a steady dose of Augmentin and is showing no signs of other illness? It's just so crushing when you think you're making progress only to expeirence this type of setback..... Any advice?
  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: you are not alone and you will get better. She has a lot of friends with allergies and/or asthma so we have used that to try to help her feel better about the obstacles presented by PANDAS (e.g., J has asthma and that can make it really hard for him to breathe so he has to take medicine sometimes and sometimes he has to work harder at breathing than you do, but he does... you have PANDAS so sometimes it's harder to find clothes that work for you or to manage your feeling, but you have to try so that you can continue to do all the fun things you like so much). This seems to balance the expectations by making sure she knows that while medicine will help, she has work to do too and it may still be tough sometimes. As others above have said, we emphasize that there are lots of kids who have this and get better. We do try not to make promises we can't keep, but endeavor to be optimistic while balancing empahty and realistic expectations!
  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 else have this experience? If so, how often do you refill? I'm thinking of asking the pharmacy to just refill once a week instead. Alternatively, for anyone whose kids are taking chewable augmentin, do they taste bad?
  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 this before 11/1 given I've seen postings here about them not covering IVIG after that date. She said that it wouldn't be a PANDAS diagnosis for the IVIG now, but something else that I didn't quite retain in the rush of it all (Maybe Hypogammaglobulinemia -- I gather this just from googling autoimmunity and low IG levels and I think it may have been the term she used) and that it shouldn't be a problem. The dosage of the IVIG is lower in this case than if it were being administered as a straight PANDAS treatment. She is now calling dd's conditions PANS/PITAND not PANDAS. Interestingly, the current bloodwork does show raised strep titers (Anti-DNase B Strep Antibodies @ 93 versus 0-77 range). She also noted that the coxsackie titers are high (we thought that it was coxsackie that prompted the current symptoms) but "old." I'm not sure how she can tell that but I assume she knows and this would mean that it wasn't coxsackie she had back in July, but maybe sores related to the autoimmunity issue. So confused. Does this make sense to anyone? Has anyone been down this path? I know I'll have answers from her on Friday, but right now my head is spinning and that seems eons away. We had thought that IVIG was a down the road thing at most and are now overwhelmed thinking we will be doing this sooner than later.
  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 been kind of holding our breath hoping dd7 would be spared. So some questions...could dd catch strep or some bacterial throat infection while on abx? If so, would it necessarily prompt symptoms or possibly not with the abx in place? would you get her cultured? wait and see? We're new at this and I'm not sure how to proceed. Any advice on how you all handle exposure and/or impending illness when already on a full dose of abx would be most welcome! Thanks!
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