LNN

Someone on another forum I belong to posted this link http://www.2enewsletter.com/welcome%20page.htm It's a site that supports 2E (twice exceptional) kids - kids who are intelligent but have learning disabilities or learning differences that make it hard to shine in a traditional school environment. This is something I struggle with a lot - how can a kid who, at 5, asked if there was an edge to the universe, struggle so much when it comes to showing what he knows in school, especially since he inevitably gets PANDAS just before they do progress testing Anyway, in browsing, a few back issues of newsletters had helpful articles, so I pass it along...They won me over with their first quote "Labels are starting points, not destinations, and certainly not destinies." - Fernette and Brock Eide Laura

Your friends have a doc who will put a child on abx just to protect a visitor who has Pandas? Forget about visiting them - move in with them and make their pediatrician your own!!! No, we will not ever say told you so. You know your own child best and your own needs best. If this is what you have to do for balance, then never second guess yourself. None of us walks in your shoes and no stone throwing allowed. Hope you have a great trip!

We did do a 30 day pred taper prior to pex, as well as a T&A. I always felt her support of a pred taper was to give relief as much as it was for any diagnostic information. When she examined my son, she didn't see him at his worst. He was much better than he was before the taper, but our report of how things were before and after were sufficient. Our DS didn't need to be super sick for her to believe us. Even tho his tics had gotten much better after the taper and a T&A in the two months prior - the clinical picture, the health history, the Cunningham test and the physical exam all played a role in her support of pex for my son. I think her intent was to help my son find relief as quickly and as thoroughly as possible. We didn't need to keep him sick until we were able to see her. I would not hesitate to do something that got you to a better place. Besides, a positive response to the prednisone will be a confirming thing. Why would you want to do pex if a poor response to pred left a question mark.

I generally try to keep balance - you can't bubble wrap them. We are 14 days post-ivig and although we juggled jobs to keep him home for the past 2 weeks, next week he'll have to start camp. Sometimes it can't be helped. But in this case, with a confirmed infection, I have to agree with the others - it's not worth the risk of losing the IVIg benefits if it can be avoided. The one additional comment I have is to make sure you say something to your son to explain that this isn't his fault and it isn't a forever thing. That staying home is a way to protect him while he heals. That being cautious now gives him a better chance at having a "normal" reaction to strep exposure in the future. That your hope is to go to lots of celebrations once you've beaten this thing. He wouldn't go water skiing 18 days after he broke his leg. Let him know you don't want to treat his brain with any less care than a leg. You want to make sure he doesn't feel "punished" for having Pandas. I'd also try to do alternative things that make happy lasting memories. Don't just let everyone sit around. Go tubing down a river, hike, go camping in your backyard or in your basement, build a fort - things that keep him away from crowds, but make him feel involved, not isolated. Spend real quality time together. It may take some creativity, but turn it into a gift if at all possible.

An email from the autism one newsletter came today and advertised this book The Autism Cookbook: 101 Gluten-Free and Dairy-Free Recipes http://www.amazon.com/Autism-Cookbook-Glut...0985&sr=1-3 It's around $13. Have no idea if it's any good, but thought of this thread and thought I'd pass it along...

If a nurse had told me in the delivery room that I would not only understand, but gain hope from a mom who celebrated the fact that her daughter was wearing panties for a week, I never would have believed her. What a strange world we Pandas families live in. I am so glad for your family, and doing a happy dance for Julia in her panties and Caroline in her dance shoes - now THAT is as close to 100% as you can get - you must be jumping for joy!

My understanding (which could be incorrect) from Dr Cunningham's presentation at AO is that there are 12-14 strains of strep (out of more tan 100+) that can trigger neuropsych symptoms. So it makes me believe that S. thermophilis is safe. Anyone with a connection to Dr Cunningham or Kathy want to run this by them?

IVIg doesn't help Lyme. Lyme is an infection, not an autoimmune response. So rule out Lyme first. From what I understand, rage can be part of Lyme. "Cure Unknown" talks about a few patients being misdiagnosed with Alzheimers and other neurological conditions. With the limping issues, definitely pursue. That's not being OCD - that's being smart.

First, a HUGE thank you to Kelly, Vickie and others who've sacrificed so much family time to achieve so much! So here's an idea to kick around after the 1st of the month...someone mentioned a few weeks ago about a few doctors in Texas who were now willing to consider Pandas treatment because of some things they heard at Autism One. In 2 weeks, the OC Foundation hosts its annual conference and Drs. Swedo, Cunningham, Leckman, Kovacevic and Nicolaides will all be presenting in a Pandas track. Maybe one project would be to coordinate speakers and/or Pandas tracks at other upcoming conferences (which generally set speakers' lists 4-6 months ahead of time). The more Pandas tracks, the more presentations by the professionals/experts, the more it becomes "real" to the doctors in attendance, the more "main stream". Can we come up with a half dozen conferences in the next 12 months? Immunology, pediatrics, neurology? We'll know we can all retire the day they have a Pandas track at a TS conference !

You go girl!!! I hope you get to enjoy an awesome summer of "Why"s!!

Negative on mycoplasma. Normal Igg and Igm levels. For us, rages came with severe exacerbations. Haven't seen any major ones since pex last summer. A few 30 second flairs under stressful conditions, but extremely well controlled by DS. I credit pex and CBT (and maturity). But I do understand that certain infections, including Lyme (and maybe mycoP?) can trigger rages. So it could be the cause for some. Just not for DS.

According to Pfizer's website: ZITHROMAX tablets and oral suspension can be taken with or without food. There is no mention of avoiding dairy. I couldn't come up with anything else by googling either. Since it was a new pharmacist, it might be worth checking with your regular pharmacist or calling pfizer. It would seem odd that there's no label on the script bottle or that none of us have ever been told this. Worth double-checking before nixing that morning glass of milk.

I'm very confused by this train of thought. If your child has a broken leg, give her morphine. If that makes the pain go away, keep giving morphine. If it doesn't help, then you can have surgery to fix the leg. IVIg is used to treat an immune issue. These supplements are bandaids and at best, treat symptoms without fixing the underlying cause. I'm not knocking anyone who uses supplements. We used inositol to get us through a bad winter. But it was to help us cope while we tried to find a doctor who'd help my son get better. Not an end to itself. (and btw - it can take 6 weeks for inositol to work, not 3, and even then, you have to be at a high enough dose, which is trial and error). He should not be withholding IVIg and telling you to try supplements first. Is it just me, or is this crazy?

You mentioned seeing Dr T at one point. Ask him to be the ordering doctor for an IGENEX lyme test. The western blot is inconclusive. I also highly recommend "Cure Unknown", which describes the Lyme war in a way that is so close to what's going on with Pandas. It exlpains a lot about Lyme in a way that's way to understand. Lyme could be behind the rages. Like Pandas, you want to get to an expert. Time is not on your side with Lyme.

I was going to say the same thing, but DC mom beat me to it. You absolutely need to make 100% sure the lyme is gone or you will never beat this. Treat this first and agressively, then see what's left. go to www.ilads.org to the contact us tab and send them an email asking for a lyme literate doctor in your area. They got back to me within hours.

Lots of people in my family are bid facebookers (I'm rather illiterate). But no one talks about problems there. Just happy stuff. So I appeal to everyone in my personal email address book. That way it's private and I can share personal updates. We all know that EVERYONE has mental illness somewhere in their families. But most people are still stuck on the stigma. WE all know how much time and energy you've put into this. But your own family may never "get it". Maybe try private email requests. I get lots of replies saying "yep, still voting every day". Hang it there Vickie - we appreciate you!! (and Kelly and Jill and others).

Obviously, in cyber space, we can't know your mom or understand the situation. I know that outsiders tell me what a "wonderful" advocate I am for my son, how lucky he is to have me as his mother etc. But if you asked my son, he'd have no trouble telling you about all my faults and shortcomings. Not in a cruel way, but he lives with me. He sees me at my best and my worst. He has plenty of examples of when I fell short of his needs or expectations. What you see on this forum is us parents "at our best" - we edit out the parts we don't want others to see. The times we yell instead of being compassionate, the times we allude to how much money we're willing to spend on doctors but fail to mention how we told our kids no, we couldn't go to mini-golf or six flags or eat out tonight because we were spending tons on medical bills. So in defense of your mom, you are only seeing the sides of us we want the public to see. I agree with all the other posts and do wish you felt more supported. Teen years are rough and even the most well-adjusted, beautiful, smart, "popular" kids feel isolated and lonely on the inside - it's part of growing up unfortunately. But even adults feel this way, and it's possible your mom's reluctance to learn more could be coming from fear, not a lack of caring. Some people are afraid of learning about things they can't control. They want authorities to treat and make it go away. Or maybe trying to read something medical makes her feel stupid or incompetent. Maybe it makes her feel like she's failing you. Who knows. Just try not to interpret the fact that she doesn't respond the way you want her to as "not caring". Maybe she's doing the best she can, tho that may not be good enough (and maybe that's her worst fear come true). My son too struggles with "cognitive fog" and it brings him to tears at homework time. It's taken me two years to learn to ask "are you giving me your best?' If the answer is yes, then that's all I ask, even if he's falling short by outsiders' standards. Try to ask your mom to give you her best, but realize that that may not mean she can give you everything the parents here "appear" to give our kids. Remember, for every minute we're on here, typing and reading, we're not paying attention to our own families : )

Wait a minute - you have a T&A scheduled for Fri. You've been struggling without abx for 3 months because of possible abx allergies. Both suggest a possibility your son has an untreated infection. You don't have the support of your pediatrician (from what I gather on your T&A post). Now you have another doctor throwing something at you this week. Take a deep breath and take one step at a time. Since you've decided to do the T&A, focus on that. Discuss with your most reasonable doctor what the plan should be for post-op - is there any abx you can use? If not, are there natural products that may help (someone mentioned oil of oregano?). Do you have a way to seclude him for two weeks? You have a lot to manage in the coming weeks. Put any other diagnosis or treatment plan on the back burner. Get thru the T&A and give it 4 weeks to see how things play out. Then see what's left and make a plan from there. You're asking yourself to deal with too much at once. One day, one step toward good physical and mental health, at a time.

We had exactly the opposite experience. We did the T&A during an exacerbation and afterward, DS started to finally heal and the PANDAS symptoms lessened. (BTW - his tonsils looked ok - it was his adenoids that were enlarged, which you can't tell until after they're out). So I guess it depends on where the infection is residing. I worried about surgery, but I worried about continued Pandas symptoms even more.

You can see Dr Cunningham's presentation (and I assume Dr Swedo's, since they co-presented?) by ordering an individual DVD for $23 http://www.autismone.org/conference_dvds Dr T's and Dr B's presentations are also available. (Unless you're a newbie, you won't learn much by ordering the Latimer/Matheos dvd, as it's just me, not Dr Latimer). Dr Cunningham didn't present anything new - mostly the information covered in her Nature paper. And she missed the think tank due to a flight delay. So to answer your question, no time frame on any new publication was discussed.

She tried steroids and they were horribly scary, her rages got far worse.........does that mean she will respond similarly to ivig? Have you tested for mycoplasma? This apparently comes with big-time rages and prednisone taken during an active infection could make it worse (just as it would make Lyme worse). If she took it after the infection were eradicated, maybe it would bring a different response?

I have to chose my words carefully, as I don't want to jinx it. In the year since pex, we have not had to deal with tics, despite two moderate episodes (had severe tics pre-pex). At the start of H1N1 and the start of episode #2, I freaked because there was one hum. Nothing anyone would give any attention to, expect a PTSD mom. I held my breath. But nothing more ever came of it. Oddly, DS developed tardive dyskinesia after one dose of tamiflu for H1N1, with leg spasms/twitches, as well as piano playing, but it resolved with 24 hrs of discontinuing the tamiflu. he also developed piano playing after taking zicam for a cold a few months ago. This happened the same week there was a news story about denture wearers developing neurological problems from one of the denture adhesive products that contained high levels of zinc. So my guess is that it was the zinc in zicam. He appears to be hyper-sensitive to stuff. yet he can go in the pool without any adverse reaction (thank goodness!). Not to say we couldn't see something pop-up now that we're 5 days post-ivig. But pex definitely helped with the tics - and rages - so far. (tho I'll warn you - without the tics, the OCD becomes more obvious).

Have you had a Cam K test from Dr Cunningham? If you're sure your daughter has Pandas, then only treating with psych meds does not make sense to me. In fact, they could be pat of the problem. Were her titers ever high? I'm not sure they're the measurement to be using for decision making. Like measuring how many tissues you use to decide how bad a cold is. Lots of tissues probably means a bad cold. But not using lots of them doesn't mean there's no cold. My son was functional when we opted for IVIG. But that wasn't good enough. I have seen him at 100% and then had him slip away because someone coughed in his direction. We did it so that he could get to 100% and enjoy being there for more than a few months at a time.

It took me a very long time to come to terms with my own fears vs. deciding what treatments to give my son. I over-analyze what soap to buy. You can imagine the conversations I had in my head about IVIG. I would never tell you to just ignore your concerns. But it's a scale, with risks of doing IVIG on one side and the risks of doing something else - or doing nothing - on the other side. After a T&A, a year of antibiotics, pex and 3 week bursts of prednisone to stop two episodes, the scales tipped for us. IVIG was the only thing left to try. I could not in clear conscience nurture my own fear of small risk if it meant letting my son struggle through another winter with this disease. Maybe spend a few hours alone on a walk or in a peaceful place and try to sort it all out. I hope you can come to a decision that brings you peace of mind.

I understand CIGNA covers plasmapheresis but not IVIG, so you never know. May be worth another try with your insurance to see if they'll cover plasmapheresis. You can also try this link if you feel up to arguing your case... http://www.advocacyforpatients.org/ivig.php IVIg PATIENT RESOURCE CENTER Advocacy for Patients is creating this IVIg Patient Resource Center to assist patients whose physicians prescribe intravenous immune globulin (IVIg) to treat a wide range of illnesses, for which insurance companies may deny coverage. Our goal is to empower you by teaching you how to file a winning appeal to convince your insurer to cover IVIg for your medical needs. Most often, when an insurance company denies coverage of IVIg, it is on the ground that the treatment is "experimental or investigational." Insurers may take this position when IVIg - indeed, any treatment - is prescribed for what's called an "off-label use." An "off-label use" is a use that is not listed in the labeling approved by the Food and Drug Administration (FDA). As a general rule, when an insurer denies coverage of an off-label use, it is very hard to convince them to make an exception. However, we have had good success with getting coverage for off-label uses of IVIg largely because there is a wealth of medical literature supporting these uses. Indeed, in a 1982 policy guidance, the FDA itself explained that: Once a product has been approved for marketing, a physician may prescribe it for uses or in treatment regimens or patient populations that are not included in approved labeling. Such "unapproved" or, more precisely, "unlabeled" uses may be appropriate and rational in certain circumstances, and may, in fact, reflect approaches to drug therapy that have been extensively reported in medical literature. have not used them, but have had this link pop up several times in my googling adventures.