Sylvia

I have two children with autism and PANDAS symptoms, a mother with Parkinsons, and I have CFS. My youngest and most severely effected son has always had WBC on the lowest end of normal, and recently definitely below normal. Anyone else here have low WBC?

Thanks, this is my youngest son for sure!

Thanks, I would love to see your food blog!

I don't have PANDAS, but Phenergan has the same effect on me - the skin crawling heebe-jeebies. AWFUL stuff for me. It DOES take your mind off of being nauseous though because the rest of you feels so rotten!

I am very new to this forum, but not to biomedical issues in autism. I have two boys ages 15 and 12 that have autism, and I suspect PANDAS in both. My youngest is responding incredibly well to Amoxicillin. We have an appointement with a Lyme specialist who also is familiar with PANDAS, so I am hoping to get more answers very soon. And ofcourse this forum is a GOD SEND! But my question is: how many other kids here go bezerk on dyes, especially red dye? My oldest is fine with it, he shows no change in behavior at all. He doesn't get much, but if by chance he gets a red Gatorade or a red candy every once in a while, there is no problem. My youngest son on the other hand, will go completely bonkers. I might as well hand him a crack pipe and a bottle of beer! I can't imagine those two effecting him worse. I have noticed a few posts mentioning dyes, and I know most parents avoid them because of the link to health problems, but does anyone else have a kid like mine that absolutely goes crazy on the stuff? He also reacts this way to to foods naturally red/high phenol foods, all sugars but especially High Fructose Corn Syrup, fruits, vinegars, casein and many more. But Red Dye is on the top of the list of offenders. I wonder how this ties into PANDAS and if these reactions might get better with treating PANDAS. He had a few mild food enfractions recently when he was about a month into a course of Amoxicillin. He had no reaction at all! A few days later he finished his prescription and had another food infraction - this time he raged and was very violent. I had never, ever seen him that bad. After that I convinced his doctor to refill his prescription for Amox. So I hestitate to even dream that these food reactions might lessen with treatment, but oh how wonderful would that be???

Not Stephanie, but I buy Kirkman's brand AKG at ourkidsasd: http://www.ourkidsasd.com/products/105%7CAlpha-Ketoglutaric%20Acid-Kirkman%20Labs I like ourkidsasd because they have many different brands of supplements in one place and give free shipping for orders of 40 dollars or more. I believe the code is FREE or FREESHIP. Kirkman's is one of the oldest companies that specialize in supplements for kids with autism. They have worked with the Autism Research Institute for many years. Many of Kirkman's products are available in trial size, which is great since you don't have to waste a lot of money on a whole bottle of something your child won't take or doesn't do well on. Sylvia That's my thinking - I believe they all the recent acronym conditions of our kids are on a spectrum of neuro-inflammation induced by some type of autoimmunity taking place. Mercury, vax, microbes, etc, all just add to the inflammation burden until the immune system is overwhelmed & unable to cope with it all. Stephanie 2, which brand of AKG did you use? It has been hard for me to find outside of the body building industry & I don't know which of those mfr's I can trust. ~Grace

No flu shots for us either. I would say "over my dead body", but when it comes to vaccines, my dead body would surely spring to life and I would open the biggest can of whoop-a** the world has ever seen if someone tried to give one of my kids another vaccine.

Awesome news!

Thanks PhillyPA, I think you are right. I don't want to insult anyone, but for us, autism would be a walk in the park compared to the psychosis/bipolar or whatever these flares are. When he was on the Amox, he was still mostly non-verbal, had sensory issues, and liked order, but there wasn't any of the bizarre and extreme behaviors. Last night he got a hold of some mustard which is one of his many problem foods. He has a long list of food sensitivities, which were also reduced while on the amox. We have re-started amox, but I guess it hasn't fully kicked in, because John Belushi in Animal House was better behaved. Nick was a wild man, just doing crazy dangerous things, laughing all the while. That is not autism. This is something far worse. To see him slide back to this state after seeing him calm and happy just a week ago breaks my heart, BUT also gives me a clear message that antibiotics change him for the better and that I need to pursue this aggressively. I got some great info from another mom here in a private message. She lives close to me and has given me a doctors name and number that could probably get me in right away. So I will be calling this morning. I am stressed and freaking out, but also very excited that after all of these years I may finally be getting the right picture of what exactly is going on. Thank you everybody!!!!!!!!!!

That is great info for me Nancy. And very exciting that he is doing so well on Augmentin. And thanks LLM for reminding me about the Hornig study. VERY interesting! I'm new enough here that I don't recall this initial post, Sylvia, but a couple of things resonate for me. Our DS (now 13) had raging ear infections, one after another, from the time I stopped nursing him (around 14 months) until we finally consented to having the ear tube surgery when he was three. He, too, was put on antibiotics time and time again . . . usually liquid amoxicillin for a 10-day stretch. I have some recollection of moving on to a stronger abx now and again when we couldn't get him clear for any length of time. Anyway, a couple of months ago, someone here on the forum posted a French research paper about otitis medea and how fluid taken from infected ear canals often contain Strep A. And that got me thinking about whether or not our PANDAS journey actually started way back then, with those ear infections, rather than around school age when strep throat would course through the elementary school like wildfire. So, was it the infection, the shot or the antibiotic that contributed to the autism diagnosis? Or a combination of 2 or more of those, perhaps? Our DS also has autism spectrum disorder traits; socially, Aspberger's has been at least on the fringe, and his IEP testing last year revealed some visual processing differences that placed him potentially on the very high functioning end of the autism spectrum. Like a lot of PANDAS kids, though, the stronger the exacerbation, the more intrusive and obvious the autism spectrum behaviors become, as well. Experientially, I can tell you that we've had DS on Augmentin for 11 months now, and he's only gotten better with respect to classic PANDAS symptoms, and the Aspberger traits have similarly abated to a large degree. His processing I would still say is "different" from an "average kid's," but he is doing well academically in spite of that, though most assignments (both classwork and homework) take him longer to accomplish than his classmates generally.

Thanks T.Mom, I seem to remember that opposing opinion too, but it has been a few years. I will see if I can find it too.

Hi Laure, I am new to this forum, but have been dealing with extreme behaviors with my youngest for over 10 years. When I tell people he used to swing from the chandelier, I am NOT using a metaphor, he REALLY did swing from the chandelier. And those were on the good days. But it is amazing how parents can survive such unusual circumstances. For so many years keeping my son safe has been my main objective. And it can wear you down. So I feel no guilt in taking time for myself when I can. I go on Girls weekends a couple of times a year. I get together with friends when possible, and my husband and I are able to get away for an evening once in a while too. And shopping for shoes and make-up on the internet also helps me At this point, I am giddy with excitement to have hit upon something that makes him calm and happy (Amoxicillin). So I am focusing on a brighter future, and that helps too. But do you what you need to get yourself through this. For some reason, so many mothers feel guilty for taking care of themselves. But do some thngs that make you happy whenever possible. I know that is easier said than done because who has any time anymore? But squeezing in some pleasures should be every moms rule, and especially to us moms dealing with such stress situations. And whatever medical or nutritonal needs you may have, definitely address those. You will best be able to help your son when you are in tip top shape. I came down with CFS in 2005 after a viral illness. I couldn't believe it. I believe being exhausted contributed to me coming down with this. What really helped me was the Mito Cocktail of supplements; CoQ10, Acetyl L-Carnitine, B Complex and vitamins C and E. It has really helped to get some of my endurance back.

I also wanted to add that I am a bit afraid of Augmentin because of the link to autism via increased ammonia levels: http://www.ncbi.nlm.nih.gov/pubmed/15607562 Anyone here have any thought on this? Nicholas regressed into autism as an infant. After each round of vaccinations he would always react very badly - actually text book vaccine adverse reactions, but pediatricians never aknowledge that vaccines can ever do harm, so I was always told these things were nothing to worry about and were either normal or coincidental. He had projectile vomiting, fever, high pitched screaming with arched back (which is the sign of brain inflammation, but I was never told this at the time),couldn't nurse or take a bottle, and extreme aggitation. I would take him in to the ped and he would always be diagnosed with an ear infection and put on antibiotics. Things got worse and worse untill his last shot and antibiotic when he stopped screaming and got that blank look on his face. An autism diagnosis followed. So I have always been afraid of antibotics untill just recently with the life changing effects of Amoxicillin. The Augmentin is intriguing to me, but I am also a bit terrified. Sylvia

Hi, my name is Sylvia, and this is my first post here. I have two boys with autism. Nicholas is my youngest, who is 12 and I suspect has PANDAS. He has had numerous regressions over the years, and each regression is worse than the one before. He actually becomes pyschotic. Wild eyed, drunken laughter, and recently aggressive towards my husband and myself. He does strange and dangerous things when having an episode, such as putting things he can choke on in his mouth and laughing, leaning off of balconies ready to jump, the list goes on and on. He is a danger to himself and others. He has been under the care of numerous DAN docotrs for over 10 years. (I acutally own and moderate the biomdedical group in my area) So he has been tested for practically everything under the sun (usually everything is negative) and we have done many different diets and therapies. He seems to be making good improvements, then tanks. At the begining of summer, his behaviors and health took a severe crash again. He has been itching himself untill he bleeds, and was covered in scabs - including his face. He started attacking us with great force, intent on doing bodily harm. He is usually so sweet and loving, this has been a nightmare. I was able to convince our DAN doctor to prescribe Amoxicillin 1000mg 2X day and Ketoconazole for yeast, even though he tested negative for Lyme and PANDAS (ASO titer was negative). He was transformed. Calm, cool anc collected. No violence, no maniacal laughter, no dangerous behaviors, and OCD and tics decreased. My God it was easy to get used to life like that. After the 30 supply ran out, things got bad again. By the third day off the ABX/antifungal combo, the behaviors were back in full force. I was able to get his DAN to refill the meds, and he was back to the beautiful boy I know and love. This time I stopped 3 weeks into so I would have a small supply to hold me over just in case. And again, the exact same thing. By the third day off, it was terrible again. What really caught my eye on this thread was Nevergiveup's take on dopamine. Nicholas was actually a very good responder to Risperdal (a dopamine blocking drug which I am very hesitant to give because of the side effects). But it really stopped a lot of the behaviors. And he has reacted negatively in the past to any supplement that is supposed to boost dopamine, such as Theanine. So I think dopamine is a definite player in all of this as well. But he doesn't need any behavior meds while on an antibiotic. And while on Risperdal this summer, he tested borderline high for high blood sugar, which is a side effect of Risperdal. Sorry for the long post, but I am finding this group to be very helpful and wanted to chime in! Sylvia 1 tablet Augmentin XR: has 1000mg Amoxicillin (extended release) and 62.5mg Clav. Acid (NOTE: the adult dose is 2 tablets twice a day) 1 tablet Augmentin 875mg: has 875 mg Amoxicillin and 125mg Clav. Acid So, I'm confused...is Dr. Latimer saying the extra 125mg of Amoxcillin (in XR vs. reg.) is too much for an 80 pounder? That doesn't seem like too much of a difference (esp. since XR has 1/2 the amount of Clav. acid). Plus, the ADULT dose of XR is 2 tablets 2x a day...so we would in effect be giving 1/2 the adult dose....which makes sense, since our a kid in a 60 or 80 pound kid is roughly 1/2 the size of an adult.