amyjoy

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. We also just hired a second person to work with only PANDAS families, and she is fantastic. Her name is Allison and you will love her. I'm very sorry this happened, it won't happen again, I promise. Sometimes things do go to the phone tree during the day if everyone is on the phone. Mike or Allison will get back to you promptly. There is also an internal email that if you send something to will go directly into the electronic medical record. You are free to use it to reach out, its a little weird but here it is: amysmithprint@gmail.com Here is my email, you are always welcome to contact me directly: amyjoysmithnp@gmail.com Many people do facebook me, in a pinch you can always do that. Sorry again, it was a transient issue and you fell into that weird moment, i'm so sorry. LOVE amy

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!!

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.

DONE

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 beyond.

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.

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

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 are negative, it doesn't mean lyme may not be a problem. we always say, due to the low sensitivity of the testing, that a positive is a positive but a negative is a maybe. mold - c4a we send out to national jewish labs in denver, through quest. sensitive indicator of mold-induced neuroinflammaton. cd-57 if you're having to use labcorp, which helps with lyme testing. cyrex gluten testing panel#3, at the minimum. if you can't get that test through your provider, try a sincere gluten free diet for 2 months and see if it helps. of course you're already doing immunoglobulin levels. then there are the basics - chemistry, hematology, ferritin, vit d, b12 and folate, zinc, copper sometimes a toxic screen, or heavy metals we always do a functional stool analysis, because the gut IS the immune system. often there are major imbalances and infections that are under the radar and must be treated to get the immune load down. GI problems can create allergies or make them worse. test for allergy specifics - foods, pets, bedbugs, mold, resp. reduce all exposures. use a air filter if he has any resp allergies, and an anti-histamine of some kind, med or herbal, to get that trigger down. these are just ideas. good luck with everything!!!

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 is going. He is going off, by himself, because he's better now. There was no way to anticipate this. There was no possible way of knowing one year ago, or even 6 months ago, for certainty, that he could just go off to college like a normal kid. Please, no matter how awful it is, how sick your child is, how much you go into debt, how much you feel like dying at any given moment - please do not give up on your child or on yourself."

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 pandasnetwork will talk about their advocacy and agenda, we'll have another PANDAS child share their journey, and then we'll adjourn. Many of us are staying for dinner - I highly invite you to consider!! I tried to post the the agenda for you but this program wouldn't let me. but if you send your email, I will try to get you info you can open. It would be incredible if you could make it. A number of people are coming from so-cal. Do you have parent connections where you are?

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 would be a great idea to give the men some additional time, to talk about their own struggles within their own selves, after the large parent dialogue. The purpose is to keep everyone engaged and supported around the unique challenges that men do face. This in no way takes away from the larger group processing, its extra, and I hope, that while you may be an extraordinary exception, that you may see the value. The goal is keeping our families together, and strong. DD's mom would receive incredible support if she comes to the event, i'm certain.

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. People are doing the genetic testing to figure that out, and also, functional stool testing to look at that huge aspect of the immune system. PANDAS is complicated, i think of it like a cluster-f***, so many things overwhelming that kids immune system.

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?

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.

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?

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.

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 of PANDAS families in breakdown and crisis - well, of course!! We are all PTSD ridden. Also, Dr. Margo Thienemann, an early proponent for PANDAS, will teach some specific skills around dealing with OCD flaring kids. She created and ran the pediatric OCD clinic at Stanford. There will also be a Men's group with Eric Fier where they will probably sit around and drink beer and talk about the difficulties that men and marriages undergo in our stressed out families, trying to keep our families strong. The health providers will meet with Dr. Susan Swedo and other treating MDs for a 2-hour workshop in recognizing, diagnosing and treating (or referring for) PANDAS. Yay. and the educators will have a 2-hour workshop with Dr. Jamie Candelaria-Greene on recognizing PANDAS signs in the classroom and working with kids with PANDAS - wouldn't that have saved years of destruction in our house if only one person or teacher had on their radar - oh this kid was perfectly fine until he got sick and then he came back to school a different person - maybe i should suggest to his parents that they look into PANDAS.....what kind of world would THAT be??? We will have a great discussion on advocacy efforts around the country, moving PANDAS into more of a sustainable dialogue.... We will hear from some kids recovering from PANDAS/PANS... Have a wonderful dinner together.... Please think about coming - and inviting your child's health care providers and teachers and school principals. Here is the website: http://pandasparentsymposium.blogspot.com/ Please let me know if you have questions. AND if you cannot make it and would like your child to be represented in the photo collage we are creating to use as a screen saver for the event, please email your child's photo to amyjoysmithnp@gmail.com Hope to see you.

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/

I really like Inflamaway by Natura, it works through a number of antiinflammatory pathways. Also, the resveratrol / japanese knotweed, for the neuroinflammation.