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Everything posted by amyjoy

  1. I"m right here. No changes. EXCEPT, while I was gone, over the summer, Mike my assistant was also gone. We hired a temporary person who was a friend of someone in the practice just to cover my calls and emails. And it turned out that this person was actually very nice but a total emotional basketcase and so many things fell through the cracks, it was awful and actually scary. At the exact same time 2 people went out on maternity leave and one of the nurses had to leave for personal reasons. Things are fixed now. We are still picking up the pieces and I'm so so sorry for the confusion.
  2. any immune trigger can do it if he's still vulnerable. maybe work hard to reduce the allergies with meds and herbs to get it under control. good luck, you can do it!!
  3. maybe the hives had nothing to do with the omnicef. you could go to an allergist and see, they can check it. maybe it was something consumed elsewhere, or exposed to something, or yeast or who knows what else.
  4. why do they have to fight about any of it!!?? i think its because their children do not have it, otherwise they would be singing a different tune. there is a well known documentary filmmaker who set his sights and resources onto making a documentary that fully portrays the insanity of the mire that is pandas life and treatment and insurance and hardship and controversy. he will be at the event, looking for parents to dialogue about it. i hope you can come and introduce yourself to him. and if not, don't worry, there will be plenty of parents expressing their absolute frustration and b
  5. Lydiasmum, if you would like, you can PM me your email and I will pass it on to a wonderful mom in the UK who would likely be happy to contact you. No pressure, just an offer. Its got to be lonely out there.
  6. Do you have connections where you are? I know of a mom in the UK that is actually come to the event, as well as 2 people from scotland and i believe a family from ireland
  7. I'll tell you what we test for, even though its always a little different for each person strep, myco, viruses (cmv, ebv, coxsackie, hhv6, sometimes toxoplasmosis or other depending on history) lyme, coinfections, c6 peptide - as a first stop, if money is an issue and you can't do igenix or advanced labs or something that is out of pocket for these tests, you could run them through Quest which sends them out to Focus Labs and Specialty Labs. They are not as good as igenix but they are way better than standard quest or labcorp or hospital, and insurance will cover. but remember that if they a
  8. I love that, Nancy - The Church of Whatever Works. Would you mind if I use that phrase? Here is a copy of a success post I put on a different forum last week. Sharing successes is so important to keeping hope and faith in that all this nightmare can end, and will end, I believe, our children can heal. "A DOSE OF HOPE for everyone on this forum - my son who was sick for 7 years, and didn't even have his first ivig until he was nearly 15 years old- is not only better, but just received the official letter giving him a full four-year merit scholarship to his college of choice, and he i
  9. Many of us will gather on Friday, whomever can, and we'll have dinner together. there is also a happy hour type thing included in the room rate, so we'll try to meet up there. a full breakfast is also included. The event starts at 8am, which is early, but it ended up being the only way we could cram it all into a single day. The morning is speakers, providers, kids, moms. Lunch will be something like 1230-115 pm. The breakout sessions are 115-330. Then a break. At 4pm, the Men's Group will meet, and the rest of us will discuss advocacy efforts. 445 or 5, Diana pohlman of pandasnetw
  10. 4nikki, do you mean the Men's Group with Dr. Eric Fier? That is something we are actually excited about, let me tell you why. So many families break up under this strain. Mine did, we are one of many PANDAS families whose marriage crumbled under the strain of the endless nightmare. The entire afternoon is the all the parents meeting together, sharing what's working in their child's treatment and also, emotional support for our collective PTSD. We are all traumatized. Most of the people you see on these forums are Moms. I think as a species we tend to reach out. Eric thought it
  11. ashley, if you really look on these pages, people are doing lots of testing. Once the pandas-type immune dysfunction is happening, practically anything that triggers the immune system will just keep the symptoms rolling or happening again. Going gluten free for many people, like you, can help the blood brain barrier and reduce inflammation and pandas symptoms, so that was a good call. Its important to look deeply for immune issues and immune triggers as well, and treat everything you find. You will also see people talking about detox pathway problems on this forum, that can be big as well. Peo
  12. It sounds like there is something(s) else going on that is still (or again) triggering your child's immune system, and the zithromax does not treat it, or treat it enough. Have you done additional testing for other infections, such as myco, lyme, viral etc and have him on plenty of probiotics? has he or anyone in your home been sick, or strep at school?
  13. We are adding a Newbie Parent Breakfast on Sunday morning, at 9am, in the hotel atrium. Just to give new parents a chance to process and ask questions in their own freaked out and supported space. So feel free to join us just for breakfast even, if you'd like, or send people.
  14. nickelmama, i thought about your post all night. I hope you are not totally beating yourself up. we are hearing more and more stories like yours. How is your son doing now?
  15. Gosh, at least you know now. Isn't that incredible. and you know, it doesn't have to be a tick bite - it can be mosquitos or fleas - and the tick can be so incredibly small that you just never see it.
  16. I just want to be sure that everyone knows about this upcoming event. It was really created by parents with parents' needs in mind. Its not just a lineup, however exciting, of presenters talking about however it is they treat PANDAS/PANS, although we love that information. The afternoon is three concurrent sessions - one for parents, one for health care professionals, and one for educators. The parents will have an opportunity to talk and process amongst ourselves and with Dr. Eric Fier from Atlanta, a loving and emotionally intelligent psychiatrist from Atlanta who works with alot o
  17. here is one of our favorite gf (grainfree) websites and actually one of my favorite standby recipes on the site http://www.elanaspantry.com/muesli-scones/
  18. I really like Inflamaway by Natura, it works through a number of antiinflammatory pathways. Also, the resveratrol / japanese knotweed, for the neuroinflammation.
  19. Hi KIM I can help you. We would just need to establish your son as a patient in our office, plus I should have copies of his records / labs and we probably need to meet on the phone for 1/2 (ish) once I look everything over. then i can help you with what you need while you're in this treament gap. if you'd like more info pm me or look at our office website hillparkmedicalcenter.com
  20. Dear jaco you are so brave and amazing. i am impressed that with everything you have been through, that you have not given up, you do still have hope, you believe that you can get well - you're just in the middle of a flare that makes you almost forget all that. but even in the middle of this flare, you are reaching out, you are inspiring and touching others with your story and your courage. that takes tremendous faith. you are in good hands with dr. latimer as you know. maybe with this flare, you all can consider a little prednisone burst? have you talked with dr. L about how bad
  21. i have heard a mix of things about OLE, some have been amazing. Last October I tried to use it in place of zithro just to give DS a break. It did not work for us, my son ended up with a strep throat within 6 days of being off zithro and on OLE at max dose. Once again its each person is different. There's the dilemma.
  22. We have had some requests for scholarships, and have more to give away at the moment. We can also help a few people with the hotel, if you don't mind sharing a suite. So please ask while we still have the resources to help. Where did we get this generous scholarship grant?? From Kedrion, the makers of the Gammaked (=Gammunex IVIg) that we use!! And its right that they should give back to us. Ha, its like, our own money coming back, kind of like, taxes. So - please ask before it runs out. Hope to see you amy
  23. maybe we can do something like the cd's, i will look into it. many miracles are coming together for it. what if we could help with the room and you could share it with someone? would that help you come?
  24. Please don't sit at home and wish you could pull the funds together to attend the symposium! A number of PANDAS parents and family members, plus a growing number of corporate sponsors have made funds available so that we can offer scholarships and some support to people that want to attend. None of us can make it alone. We all know how stressful and isolating it is to be in our position. Many of us are financially tapped out. Please let us support you in going - we have some funds right now. You will HAPPY you went to the Symposium...it is going to be a rich environment for us all
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