Sylvia

Any more info on this? I have not re-ordered yet, but everything I have read points to xylitol being good at keeping strep at bay. My mom (who is 77 today!) has had lifelong, untreated sinsus problems. They got much worse later in life, so I am concerned for the rest of us not to go down that road. Thanks!

My doctor recommends 10 mg per kilo per day. and start to taper after 4 weeks with no improvement. Thank you!!!

We have used Xlear off and on for years: http://www.xlear.com/nasal-spray.aspx It is supposed to be great for clearing the sinuses of strep. I now realize it has been a while since we have used it, this thread is a great reminder to re-order!

This is a very timely thread for me. My 13 year old with severe autism made great improvements on Amoxicillin, but now a year later, we have slid backwards quite a bit. We tried Augmentin, but things are still bad. Not horrible, but we are going backwards. I am thinking we need to pull out the big guns; azith. What dose is high dose? Is Azith very expensive? Thanks for the valuable input!

Its been my experience that many doctors believe their job will be in danger if they do help us. I've had a few that flat out told me they were not going to "risk their career" to help me. And I know our pediatrician has caught more than a little flack from the other doctors in his practice for helping us. Yes, you are absolutely right. In the autism community it is known as "the Wakefield effect". Some of the only few mainstream docs that were actually helping families totally did an about face after the Wakefield witch hunt. It is very discouraging, and I can't really blame many of them. To risk a medical career is asking A LOT. Which is why, ofcourse Dr. Wakefield is such an amazing man. I always think of Josh when I think of Dr. Wakefield: http://www.ageofautism.com/2010/04/i-am-josh-a-boy-after-his-mmr.html Kids are suffering. And the system is set up to let them keep on suffering. The rare few will say "no way, I am helping no matter the risk to myself!" Most will look the other way. But one way we can support doctors that support us, is to band together. PANDAS famalies, autism famalies, ADHD, Chronic Fatigue, etc. are joining Canary Party: http://www.canaryparty.org/ which is a new political platform that will be demanding health freedoms and health care choices. And hopefully give doctors some support and encouragement to help families like ours. I am state rep for California, so please feel free to ask me any questions about Canary Party at Sylvia.Pimentel@canaryparty.org

Sorry to hear, but not surprised. Isn't it incredible that someone who doesn't have any answers, can't provide you with any help, and is rude on top it - she gets to collect an enormous paycheck?! In most other fields, if you completely suck at what you do, it would mean you couldn't make a living. But for many of these doctors, they can fail us in every possible way, and it doesn't matter. They are secure in their jobs forever! What a racket!

That is a relief that everything seems alright now. I will keep my fingers crossed for you guys!

Oh, this makes me so infuriated! Vaccines work by tricking/stimulating the immune system. This is very risky for kids with PANDAS. As SarahJane pointed out, those were seven vaccines given in ONE day! MMR is three, DTaP is three and chicken pox = 7. The fact that this doctor bullied you into something you were not comfortable with is inexusable! My two boys are vaccine injured resulting in autism and PANDAS. My youngest had textbook-example symptoms of encephalopathy; high pitched screaming with arched back, projectile vomiting and fever. His doc said this was a normal vaccine reaction and that he would be fine. He is most definitnely NOT FINE. He is 13 years old now, non-verbal, and unable to be left unsupervised for a moment. His doctor who said everything was fine is no where in sight. He has not helped pay his enoromous medical bills, never helped change a diaper through grade school, never got beat up when he was in a violent PANDAS rage. The parents are always left holding the bag for vaccine injuries. My biggest regret is ignoring my instincts and going along with "doctor's orders". Sorry if I sound bitter. That is only because I am. Vaccines hurt a lot of kids. I am hopeful and optimistic, but angry that doctors are so irresponsible with our childrens lives.

My oldest son has had the mousey smelling hair for years. Even right after a bath or shower, his hair does not smell fresh. I have noticed this since at least 7 years old, and he is now 15. Since hitting puberty a few years ago, the problem is worse. He has a diagnosis of PDD, but we are treating for PANDAS and looking into Lyme. His little brother who has severe autism (non-verbal), severe PANDAS symptoms and possible Lyme, does NOT have the mousey hair problem. He smells fresh as a daisy after a shower. So I am always intrigued by the hair issue.

I am sorry you are going through this, I can imagine what a sensitive subject this can be for a mother of a teen boy. I don't have any helpful advise except to say that intense sexual thoughts are pretty common in teenage boys, but for many of our kids they have lost the filter that allows them to make good choices/judgements. In the autism world, high testosterone is discussed a lot. I don't know if you have looked at any of the Geier's work: http://autismmedia.org/media4.html Outside of that, perhaps one of the mild meds such as Tenex, which is a blood pressure med used for impulsivity might be worth exploring? I understand your fears - boys can quickly be labled predators or worse for expressing sexual thoughts. I will be praying you get some good ideas from the others here today!

I wanted to chime in that any type of calcium supplement will cause my youngest son to rage. It was one of the first triggers I found. He also reacts to many other things such dyes, sugars, HFCS, MSG, but calcium is the worst. I am on a lot of the autism groups, and there is a small subset of kids that react badly to calcium. I started him on the GFCF diet when he was 1, and I desperately tried every type of calcium supp on the market since he wasn't eating any dairy, but they all sent him bezerk. Finally I gave up, and he gets no supplemental calcium. But he still tests normal to high on blood tests for calcium, so whatever he gets through veggies stays with him I guess. And just yesterday he had a short bout of aggression. He hadn't had any aggression at all in months since being on long-term antibiotics. I double checked his muffin (he now eats gluten no problem), and sure enough, it had 10% of the RDA for calcium added to it! Just that small amount sent him charging at me. No, we haven't had tests for PANDAS or Lyme yet. I did manage to get ASO and DNase-B titers, but that's all anyone has been willing to run for us. We're definitely going to check on Lyme disease and co-infections. I tried to get Dr. I in San Antonio to run these for me, but he said no. We asked the neurologist back on Sept. 3rd for an MRI, but he said no because his diagnosis was "psychiatric" issues. I wanted one because ds11 had a very hard fall on concrete (fell backwards off a step stool in our garage at age 8), so I was wondering about post-concussion syndrome since he had a very small outer lump afterward. I think half the battle is finding a good doctor. Can't do as much without one. Thanks again to all for your support and suggestions. I'll post updates as they happen. Luckily, today was supposed to be a good day, and it was. No rages! Preparing for tomorrow.... Angela (SearchingMom)

Great tip about borrowing from TACA, they are awesome! I bought them last month, but have only watched the Cunningham/Swedo presentations so far. I won't have time this week, but I will definitely be watching them all next week!

I can't even imagine how traumatic this was for everyone involved! I am sending positive thoughts to your family tonight!

Thanks Norcalmom! My son has so much in common with the kids in that thread!

Wow, VERY interesting thread! I have two boys with autism/PANDAS, and I usually post comments and quesitons about my youngest and most severely effected son. But my oldest son made huge improvements on handwriting recently since starting Augementin 500mg two times a day. I hadn't really seen any big improvements, then it hit me - his handwritng was PERFECT! Beautiful really! That just blew me away since he has always had problems with tracing over and over certain letters or words, making his periods the size of bowling balls, not spacing his senteneces correctly, etc. I had been hoping to see some improvement in his obsessions, such as he refuses to put a shirt on if his hair is wet, he rufuses to wear long sleeve shirts (although he will wear a jacket if it is very cold or raining), and many other little rules he must live by. None of those really changed, but suddenly his handwriting is a site to behold! This gives me great hope that we are ON TO SOMETHING HERE! Thanks everyone!!!!!!!!!!!!!!