fuelforall

You misinterpret. US did not mean my family and my kid, It meant US the Pans community. As for laser light therapy, you need to read the book. It is used in some chiropractor offices to correct rotator cuff injuries. But the place in the book does much more.

http://www.livescience.com/49942-seasonal-obsessive-compulsive-disorder-cured.html I didn't think there would be anything here for us but it turns out otherwise. Drugs didn't work for OCD, light therapy did. Please look at Norman Doidge's new book "The Brains' Way of Healing." Second book on neuroplasticity of the brain. In one chapter, Dr Doidge talks about laser light therapy treating numerous auto immune conditions. Yes, I did call the Toronto clinic mentioned in the book about PANS. They said they couldn't help... unless someone in Toronto wanted to be a guinea pig and then they might consider it. Anyone used The Learning Program on their children for various disabilities? Sound therapy? That's in the book too and I think it would benefit my youngest.

I can only say this, if you are seeing progress with abx, then you can expect to have long term abx prescribed prophylactically. Any arguments here? Who gets better, who gets well? We are all individuals and treatments may have partial success and make us complacent. I speak from experience there. You just have to be vigilant.

Hi, folks, We saw a lot of OCD relief when my ds14 went on ibuprofen. Many others report the same. We are beginning to try pterostilbene supplements. There are a few companies out there who have them. VERY powerful bioavailable natural anti=inflammatory. I don't use this company with the link below, full disclosure. But this is a nice summary. http://www.pteropure.com/ptero/index.html I would also call attention to the work of Harvard's David Sinclair and NAD as possibly helpful. Much of the work on the cells that age and reducing this aging process can have applications in our own lives, and our children's. Reverse the aging process, reverse aging of the brain that comes with our children's condition. https://www.yahoo.com/health/researcher-hunting-the-key-to-aging-believes-95193101362.html We will let you know how this goes. Celebrex, with all its side effects, has had some good success with a couple of people's children here. Why not a more natural more powerful version?

If she can handle the beer like taste, Grainfields USA has the best product. Not cheap though.

Ibuprofen tried, CM Brannen and Michelle B? God, this is just so awful. Makes my ds14 seem almost normal, cursing in his room at his video games. Not sure IVIG will help right off, as you probably know. Monthly would be needed. Dr L didn't think PEX was right for him?

Off topic... why are guys always the ones who are so clueless? I'm the Pans savvy one in the house and my wife fights it all the time. Unfortunately, there is no good news for you. Yes, PANS can run in the house, in the family and even if they are not blood related. My younger son has a case of his own with tantrums that last 45 minutes and historically high strep titers (never gets strep though). Lots of throat clearing tics. Better run tests. He's young, maybe it can be checked quickly.

This is a good piece but you will notice the word VACCINES does not appear in it! Probably the writer was under strict orders. The commenters, on the other hand...... GREAT! They weren't shy about it. http://truth-out.org/news/item/29216-what-are-we-doing-to-our-children-s-brains#

It's hard to say. Most of the PANS MD say better safe than sorry. Not sure what the right thing to do is, esp as you don't have a kid with strep. Same as me. We did it but his numbers did not change years later when we re tested. The suspicion is that my son is a carrier and it's way back in his sinuses (he has struggled a lot with sinusitis in the past, changes of diet seemed to have helped that). So if the strep is in the sinuses then I don't think removing tonsils and adenoids is going to be much of a help. It would be nice if all of us knew exactly where the infection was lingering.....

ssfkat, what provided relief, since you said "those first few days."? Any particular med, abc, etc?

Dr T has made a case for the hypothalamus, not the basal ganglia. Given my son's sensory oCD right now, I tend to agree.

How are things going here, Cara?

Have you not seen improvements yet? There are several posts out there about Rituxan, ck them. Some success but I'm sure parent will weigh in. Did he have anti-lysogangliosides in his Cunningham? Are you using prophylactic antibiotics still? You mentioned augmentin..... Are they on any diets? I have a ds14 and I am tired of the nightmare, I am sure you are too! My condolences!

If you can cut to the chase, I would find a place that can supervise this (see link), then he does it for an hour at home. I am planning to do the same with my younger son who has milder PANS than my elder. http://integratedlistening.com You can read more about it in The Brain That Heals Itself, an excellent book just out by Norman Doidge, MD.

Also, you might want to get ahold of some high quality pterostilbene, supposed to be very anti inflammatory.

I'm sorry for your struggles, people here know all about them. This is really not a whacky suggestion. Please go out, buy a bottle of bleach, pour a cup in your bath and sit there for 20 minutes. The bleach leeches out the toxins from your body. You should feel a little better after, though perhaps you will not have a very pleasant smell to you.....

FWIW, Dr. T now has two assistants in his office, Paul and Mary, and you usually can call and get an answer. They are very nice. I asked if bloodwork had come in, Paul said he would call Quest. He called me back in three minutes and said yes, they were faxing it over. Did I want a consult with Dr T about them? So I scheduled one for early next week when the second round of bloodwork should be back. Given I went to see him five years ago when he had no support, this is a definite improvement. Apparently, an improvement over last year

In the meantime, get ibuprofen down her ASAP. My son had really bad attack last week and the ibuprofen really did settle him down on obsessive thoughts, etc.

Get ibuprofen down him if you can. If it really is PANS, it should help.

Grainfields liquid. Tastes like beer. Live probiotics. Most probiotics, by the time they get to you, the cultures are dead. This stuff works on the biofilm.

Bravo!

So we put my son in a special ed program and he can't stand being in a school full of PANDAS kids. I jest, but you can guess what I mean. His classroom is full of kids he says are in worse shape than he. He can't learn, he can't behave himself because he finds it so distracting. We are examining options. Please post any thoughts, ideas, etc. My son is beginning to heal slowly now and this is an important time to consider what to do. We have a possible school for next fall but that is next fall, not now. Michael

Re Paleo: I have. I like it, I feel better overall. My 11 year old son... eh, he won't do it. But he knows his food allergies dictate his behavior. One day I hope. Please look for GAPS diet posts from ozmum for additional info. It's essentially Paleo. It's also close to the Strict Carbohydrate Diet of Elaine Gottschall. Dr. Bock mentions paleo and SCD in the same breath in his book. Remember that most carbs are bad for sick kids like ours because they crave them and because of the sugar and because grains and legumes are so genetically engineered (nothing is safe from cross pollination) and hybridized. It can be very restrictive. It means fresh food, nothing processed. Robb Wolf's book is great. In fact, a chapter was run on Tim Ferris' blog, got a lot of comments. http://www.fourhourworkweek.com/blog/2010/09/19/paleo-diet-solution/ Good luck. The sweet potato and yucca are your friends here. Lots of saturated fat and grass fed beef (more healthy than chicken). I just had ostrich, it was yummy!

It's just that anger tends to be what all of us see. This is a columnist/teacher who is probably unfamiliar with PANS. You are spot on that there needs to be a fourth category. I think the writer was using a metaphor of Pearl Harbor because it was Dec 7 and it is a little sloppy. But he is saying children are attacking teachers and such. These teachers have no clue what happens in the home. Many children can hold it in, then let it out at home. What he is saying opens doors for the ignorant. And maybe more teachers will chime in that this is what they are seeing too. Michael

http://tucsoncitizen.com/tired-tucson-teacher/2011/12/10/where-have-all-the-angry-children-come-from/