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!!!!!!!!!!!!!!

Same boat, we started our youngest on 1000mg twice a day at the begining of summer with very good results, so we switched to 500mg Augmentin twice a day thinking that would be better. He regressed in several areas, but not all. I don't know if it was because we didn't go up high enough with the Augmentin - but his doc said since it wasn't active strep 500 2x day should be enough. After a month I have just switched him back to 1000mg Amoxicillin again. It has been almost a week back and not much change. Ugh! My concern with Augmentin was that it can cause an increase in ammonia. So I am giving AKG as well. I hope switching back to Amoxicillin brings the improvement we lost while on Augmentin!

B-50 complex is always a part of our regimine. Right now we are using Thorne brand. We have never had a problems with any of the B vitamins. (knock wood!)

They most probably were giving your wrong information, unfortunetly. If you want to know for sure, you could ask for the lot number and package insert that comes with all vaccines. It is extremely disturbing to me that doctor office staff are so often wrong about this. With the vast majority (about 90%) of flu vaccines NOT mercury free, it amazes me that so many will tell their patients wrong information without concern. I most certainly hope you did indeed receive a mercury free shot, but odds are that you did not. http://www.livestrong.com/article/76622-flu-shot-ingredients/ "All FDA-approved multi-dose vials of seasonal and H1N1 vaccine contain thimerisol, a mercury-containing compound used a preservative. A flu shot dispensed from a multi-dose vial contains about 25 micrograms (0.000025 g) of mercury as thimerisol. The manufacturer's product insert will always confirm the presence and quantity of mercury for a specific product" Read more: http://www.livestrong.com/article/76622-flu-shot-ingredients/#ixzz13WGrmb2s

Wow, awesome, AWESOME job!!!!!

Here is one of the studies I remember that links mercury to autoimmune disease: http://www.umm.edu/news/releases/mercury.htm But mercury is so toxic that it can damage in so many ways. It has no business in medical products.

Mercury can cause or aggrivate autoimmune disorders, so most for most families here, mercury would be the last thing on earth they would want. Over 80% of all flu shots have the full amount of thimerosal (mercury based preservative)in them. My kids are already vaccine injured, we have given enough to the herd, no more shots for us either! That's all we need is for me to go down with a vaccine induced neurological injury! OYE!

I am so glad you were able to get a hold of information that enabled you to make an informed choice. I had no idea of the risks involved 11 years ago, and would have done things so differently had I known. I would do almost anything to go back and do things over with my babies. I wish you the very best!

There are some serious problems with the Whooping Cough vaccine: http://www.nvic.org/NVIC-Vaccine-News/July-2010/Whooping-Cough-Outbreaks-Vaccine-Failures.aspx

I don't know why the smile face was inserted below - I was typing Hepatitis B.

SarahJane, keep in mind that DTaP is three seperate diseases, MMR is three, plus the polio and Varivax brings the total up to 8, and if they did any others such as flu, you are fast approaching double digits in one day. Vaccines have devestated my family. I am always hopeful, but in all likelyhood, my 12 year old son will never have a job, never get married and have kids, never be able to live on his own. Because of a vaccine for a sexually transmitted disease (hepatitis that he got as an infant. I have spent the past 11 years pouring over ALL of the studies, reviews, books, opinion pieces, Freedom of Information files - EVERYTHING I can get my hands on about vaccine safety, and I can tell you, as God as my witness, the vaccine program in this country is absolutely corrupt. Vaccines kill and mame tens of thousands of children a year, and the vast majority go without any sort of justice. The benefits of vaccines are grossly overstated and exagerated, while side effects are swept under the rug and brushed off as coincidence. If you or your child is harmed by a vaccine, the most likely scenerio is that your doctor will turn his or her back on you. You will be told it was all a big fat coincidence. It is a huge risk to take. And most take these risks without fully realizing what the odds really are. For instance, infant mortality rates in the U.S. is extremely high - we are number 44. Babies born in 43 other countries have a better chance of surviving infancy that a child born here. We were number 3 in the mid 1950's. Autism is epidemic. Speech delays/disorders are epidemic. ADHD, autoimmune diseases rampant. We are not healthier for going crazy on the vaccines. Just the opposite.