rymom

Oh, but I think they are truly autistic...my daughter fits all the criteria for severe autism. Its just that those criteria only identify symptoms of something! I say my daughter is autistic, its just that the autism was caused by PANDAS, which interfered with her development. Since she had it at a very young age, it interfered with her very early development. Children who get this at an older age, have completed early childhood development, so do not present as severely, and are more easily identified because its clear that they were normally developing and then something changed drastically.But, I think you're right, many of your clients probably have PANDAS as the cause of their autism. I think that "true autism" is something genetics gives you, the kind that a physician sees maybe once in his career, prior to the 1980s. This "new" autism, ASD spectrum, pdd, blah, blah, may, in fact be all immunologically-related and may well be as common as strep gone awry...I don't mean to oversimplificate it by any means, but some of these kids, even the ones who have had developmental issues from an early age as undiagnosed Pandas can still be helped greatly, or even saved with aggressive treatment. My dd is making good progress and she's had it for 7 years and she just turned 10. I think it is great that special ed teachers and providers are beginning to talk about this and begin to question and not simply accept the "autism diagnosis" especially in the very young. Especially not now. I often think of that TV commercial that says, "The odds of a child being in a Broadway play, 1 in 10,000...the odd's of a child being diagnosed with autism, 1 in 166".... they may someday should substitute "Pandas" for "Autism." I am right there with peglem leaning towards PANDAS has caused the behaviors of Autism in our son. And I do believe he got it before he turned two before he started speaking more than a few words. We have had the up all night episodes for a long time in our house, just not with the intensity that caused us to finally seek out Dr. Latimer. Dr. Latimer has him on 5mg Azith two times a week. When he has been exposed to strep (in class we have it on his IEP that they have to let us know if there has been an exposure at school) we bump it to 5 mg the first night and three nights of 250 mg, then return back to 5mg two times a week. DS is also on Kyodophilus (probiotic) and Quercitin (supplement for inflammation given by DAN doctor).

I have a 7 year old son who was diagnosed with PDD-NOS at 2 yrs 2 mos and then with Autism at 6 years. He is considered verbal but has apraxia and communicating is a difficult task he is working hard at. He has been on a gluten free/casein free diet since five years old, which had worked wonders for his digestive tract but had not improved his communciation skills. In the last week of April 2009 he started having out of nowhere uncontrollable rage tantrums that lasted for up to 1 hour. He also started waking up in the middle of the night, pupils dialated, in rage tantrums, kicking his legs crazy. He also would pee every 10-20 minutes (we realize now he has had many rounds of this throughout his little life.) He then started sticking his fingers in his mouth and would make circles with his spit on everything. He also tore apart all of my plants outside for hours. We took him to seven Ped's in all, all tests types of tests done, nothing turned up. I was told by two Ped's that this is "autism", one even told me sometimes a trigger flips and this happens. In one week?...I didn't believe it. I finally ended up at our DAN doctor who recommended we get a CAT scan, again nothing turned up. Then our DAN doctor sent us to Dr. Latimer (we live in DC area.) We were in the office for 30 minutes and Dr. Latimer said, "I think he has PANDAS." (June 2009) I had never heard of it. She had us get him tested, he came back at the time with CaM Kinase of 147. He went on Predisone and he finally slept and laughed for the first time in 4 months..we were dumbfounded. He tapered off Prednisone and all of his symptoms came back. He got IVIG in Sept 2009. He has been sleeping (knock on tons of wood) since Oct 15th. My husband and I realize that this is the first time in his whole life since he was maybe a year old that he has slept through the night for this long. It is a miracle so far for us. We continue to see improvement everyday. It is slow but we will take it.

Hi! That sounds exactly like my daughter! She doesn't get any symptoms of strep other than behavior. The only times she tests neg. for strep is when she is on antibiotics, and sometimes she's tests positive even then. And my daughter has low ASO/AntiDnase titers as well. That suggests to me that your son may have intracellular strep, which means you need an antibiotic that will get at the bacteria inside the cell. Azithromycin seems to be what works best for my child. My daughter has autism...I'm not in denial about that, either, but understand the disclaimer-you've had those looks from professionals too, eh? The "poor-parent-just-cannot-accept" look? Well, here's what I think about that. Autism is, in short, abnormal childhood development. But, there must be something that has or is interfering with that development. It really bothers me that autism is considered a "diagnosis", when its really just a label given to symptoms of whatever is causing the abnormal development. I think, in our case, PANDAS is what caused the autistic SYMPTOMS.