peagreen

very well said! We share your frustration. In my state, autism qualifies as a lifelong disability which automatically makes you eligible for medical medicaid. They will pay for all kinds of services and therapies. And though the ABA folks have worked very hard to show it is the only "proven" therapy for autism (their research shows a wide variety of results, but there is a ton of it), it has been not effective (perhaps even detrimental) at all for my daughter. There really continues to be NO TREATMENT for autism, nada- send them to psychiatrists, educate them out of it....for my daughter nobody knows what to do, and they all think another field should handle it- and you get passed around. The bigger problem is, I think, physicians.....they see the autism as a finality, the "diagnosis" that explains everything. Honestly, I have heard the most assinine things from doctors.....Everything in my daughters medical history previous to finding her current pediatrician (when she was 10) was chalked up to autism. Wow, didn't realize I still had so much anger over this... They missed her chronic strep...all that drooling (because it HURT to swallow) was poor oral motor skills, The 3 days she couldn't walk, but dragged her legs behind her as she pulled herself with her arms- must be just fine, because its resolved now. She was sick ALL the time- "must be allergies" that happens a lot in autism. We were told she couldn't get a GI work up unless she complained of stomach pains....she couldn't express herself well enough to complain about anything! Sorry Vickie... Anyway, Our current (angel) pediatrician has been so good about trying to help us figure things out...still he sends us out to specialists with that same old attitude. Our local children's hospital is the worst, for specialists dismissive of autism. Hence, my thoughts that they should stop looking at autism as a diagnosis, and start seeing that its just symptoms....you look for a cause when you see symptoms. When you have a diagnosis, you think you found the cause!

I think if it's standing out to you, it probably isn't quite typical. My son does exactly the same thing, and it goes well beyond just having passion for a topic. Right now, his obsession is Pokemon, but it has changed multiple times over the years. We're doing social skills classes to help my son understand how to be sensitive to the wishes of others in social situations. I don't want him to lose friends over this. Good luck! P.

Both my children have behavioral changes following illness, which to me represents some kind of neuro-inflammatory immune issue, but they do not display much in the way of typical PANDAS issues (tics, OCD, or anxiety). Instead, both my kids become hyper, loopy, sensory seeking, and emotionally unstable/ridged. When I look at the typical presentation of PANDAS, I feel like my kids don't quite fit, yet they definitely have something going on. Also, my daughter's Cunningham results were above the mean in the PANDAS range. We tried Azith for both kids, but because they both have yeast issues, we saw both kids become worse while they were on it. Also, my son has other abnormal immune system lab results, like low IgG, low IgA and failure to mount antibody responses to pneumo strep and candida. His Cunningham results, however, were close to normal, and he's the one with more severe behavior issues. Does this sound like PANDAS, or something else? Since antibiotics didn't work, what should we do to help them? I'm terrified that my daughter is a walking time bomb with her Cunningham number at 165. Should we consider IVIG for one or both of them? Would appreciate some advice. P

Nitrous oxide used in surgery can cause a depletion of vit. B-12 which can cause behavioral changes. My son was a different child the day after his procedure. We had to increase his methyl b-12 injections to get him back. Paula

Since my son was initially diagnosed on the Spectrum, we stopped all vaccines at the age of 1. By the time my daughter was born, we were already many years into treating my son through a DAN doc. Because of all this, my daughter did not get any vaccines, and I did not get any while pregnant with her, though I did get a flu shot while pregnant with my son (If I could only turn back time). I think my kids were definitely born with underlying immune system vulnerabilities, and I firmly believe that had my son rec'd the MMR, he would have been unrecovereable. My daughter is a typical 3 year-old, as long as she stays on a certain diet, but her behavior does change after she is sick. She, like my son, becomes more sensory seeking, loopy, and hyper. But I think if we vaxed her, it would be much worse. I'm still trying to figure out if, in fact, she has PANDAS, and if so, what to do about it since she does not show signs of OCD, tics or anxiety...at least not yet. Paula

My daughter, who appears to have PANDAS, is unvaxed. Although she doesn't have a classic case of PANDAS (very little OCD, tics, or anxiety), she does have behavioral changes following illness, and had a CAMK score of 165 when she wasn't in an exacerbation. My son who was vaxed up to a year (no MMR) also has behavioral issues following illness, and has ADHD-type behaviors most of the time, had an almost normal CAMK at 118%, and low neuronal antibodies. He was also not in an exacerbation at the time of the draw, however. Anyway, if my daughter really does have PANDAS, it appears that it CAN happen without vaccines, though I don't doubt that vaccines can trigger PANDAS and other immune system issues.

My DS does this, and we think it is a sensory seeking behavior. He tends to do it when he has yeast overgrowth. p

Yeast definitely causes ADHD behavior. My son also gets overly silly, talks CONSTANTLY, and has difficulty staying on task, when he has yeast. You can test for yeast with both urine and stool tests. A mainstream doc won't do this, but a Naturopath or DAN doctor will. Treating the yeast can make a HUGE difference!! Paula

You know, we've been in the yeast battle for almost 7 years now, and have tried all of the things you all mentioned. Some helped for a while, but nothing helped for very long. At present my son is on a special diet, two Rx antifungals (Amphotericin, and Ketoconazole) plus lots of probiotics, caprylic acid, etc. He seems to need all of this to stay functional. But even with all this, he still shows yeast overgrowth on his labs. And, whenever anything impacts his immune system (like a virus), his behavior becomes very sensory seeking/defiant/unfocused/loss of tone, and I'm not sure if that is from more yeast growing, because the immune system is even more distracted, or if the behavior comes from more of a PANDAS type thing. It's strange, though, because he can be great one day (like yesterday), and a nightmare the next (like today). I'm exhausted and oh so tired of all the medical mysteries and confustion we all deal with on a daily basis. I just wish there were concrete answers. Thank you all for your input! You're a great group! Paula

One more question: Our DAN doctor said that he didn't feel that IVIG would help with yeast issues. Does anyone have any experience with this?

Thank you all for your comments. My son has had several immunology workups over the years. He always has low IgA, low IgG (IgG1 subclass), fails ALL pneumococcal strep titiers, and fails to make an antibody response to Candida. All of the three immunologist asked us to re-vax, then check titiers again. Since we didn't feel this was safe, they basically told us they wouldn't go any further with us...ALL THREE!! Our new ped is trying to get us in with another immunologist she has faith in...it's been frustrating! We've been working with a DAN doc since my son was 14 months old, which was when he was diagnosed on spectrum. We have checked him for metals several times over the years, and have not been able to get a result that would compel us to chelate. He was only vax'd up to a year, and only rec'd thimerasol in one vaccine (hep , and though I wouldn't doubt that the metals in that vaccine are causing him issues, I'm confused by the fact that my daughter, who is unvaxed, also seems to have yeast issues. It makes me think that there may be some other factor involved, like the XMRV virus that everyone is talking about, which is causing immune dysregulation. My daugther has not yet had a full immunology workup, but some immune labs have been done, which resulted in normal (but on the low side) IgG levels. Since she is unvaxed, and only just turned 3 years old, I don't know how much we would learn from checking titers, but hopefully if we can fine a good immunologist, we will learn more about her immune system. So, I agree that my kids have immune system issues that are causing their yeast issues, but my question is, what can I do about it? I also have concerns about IVIG because of the possibility of contracting as yet unknown infections. Until recently, the XMRV virus wasn't known...a Retrovirus that causes acquired immune issues like the AIDS Retrovirus. I'm really at a loss for how to help my kids!

We just got my daughter's CamK score which put her well into the PANDAS range (165). Her behaviors are mild at this point, though she does have worsening behavior following illness, and had a major regression at 4 months old after being sick. She is now fairly typical, but because we were testing my son, who has more severe issues, we tested her as well. What's odd is that my son had a low CamK score (118), and very low neuronal antibodies, even though his issues are much more severe. Still, I fear my daughter may be a walking time bomb. My question is that my kids' doctor is suggesting antibiotics, which concerns me because both my kids have major yeast issues. I can't imagine what will happen with their yeast if we go on longterm abx. Even withoug antibiotics my kids have yeast issues, despite lots of probiotics and even antifungal medication. What do you all suggest? P.

Has anyone checked titers following a flu shot? Since our kids don't have normal immune response to vaccines, how do we know that they are getting ANY protection from the flu shots, whether it be one or two...it may not matter? They just may not mount an antibody response at all to the vaccine.

My daughter just turned 3.

I just got my daughter's CAM score, which was 165. Blood was was not drawn during a particularly bad time, although not great. Her neuronal antibodies were all at the very high end of normal, except one which was in the middle of the normal range. My daughter's symptoms started when she was 4 months old and was ill with what we thought was just a common cold (no fever, just congestion). She became very lethargic, and remained that way even after the cold had gone away. She stopped making vocalizations, stopped trying to roll over, and basically became like an vacant shell. She gradually came back to life, but after that, she had a strange wrist rolling hand movement (milk-maid grip) which made me worry about PANDAS even then. Currently, she is near normal, but has behavior changes every time she gets sick, which include being more temperamental and more sensory seeking. I also have a 7 year old son who had a CAM score of 118 (though he was in fairly good shape at the time of the draw), who has more severe behavioral issues that worsen more dramatically following ANY activation of his immune system. My son's issues are sensory seeking, perseveration, drunken/loopy behavior, self-regulation issues, etc. His neuronal antibodies were all low normal, with one being below normal. Thoughts? Paula