DonnaD

Thanks for reply....Our's is UHC PPO. Your's is covered 100% out of network...wow... What's your insurance?

Anyone know of a good doc who takes insurance and who also know what they're doing as far as testing, etc? I'm in MD/VA/DC area.

Recently spoke with friend of family....told me his father suffered sinus infections entire life. He finally had surgery where they biopsied and found strep. My oldest has had chronic sinus issues entire life. Starts as stuffiness along with exacerbation of emotional lability, fatigue, ocd, irritability. Usually ends with some serious strep. Between episodes of throat nearly closing, he will complain of "weird" feeling in throat. Like many of the children I've been reading about on this forum, he also had repeated ear infections that began at 5 months of age. He has also screamed in pain about his right eye intermittently throughout the years. He would grab at it and say "eye, eye, eye" He responded so vicerally, that we just knew it was acute pain. No doc's, thus far, have considered a mycocele. His ENT said that his adenoids probably harbored strep and suggested removal. AFter this post, we will maybe consider it.

What is the story of daughter #1...I'm new here, so am not familiar with everyone's story. I can tell you that my boys initially presented with sensory, anxiety, ocd, tics and separation issues that spiraled until I lost them. ONce on antibiotics for either strep or unknown etiology behind chronic sinus/ear infections, (probably also strep) they improved dramatically. I just couldn't get doc's to see a correlation between improvement in speech language, behavior, ocd and antibiotics. AFter reading everyone's personal accounts, I'm definitely waking up. Just about every one of those you mention run in my family also, with the exception of the anti-phospho antibodies, but wouldn't be surprised if it is present with right blood tests. I did read in the PANDAS org site that rheumatological disorders run in PANDAs families. I guess either autoimmune issues and/or immune dysfunction in general would be common in our kids. I'm anxious to find out what other immunological issues crop up after visiting with Dr. L. I'm going to have her combine the lab slip from the rheumatologist my youngest is seeing with any of her tests. I hope it doesn't mean several tubes, but will do whatever it takes.

Thanks for the response and concern...could write a book about our family's medical anomalies, including my own. STage 2B breast cancer in 2007 as well...boys on AS (regressive type) that I'm seriously questioning due to tics, OCD, anxiety, consistent with PANDAS. But, like everyone on this forum, we all plug away, trying to help our kids as much as possible, while setting aside our own needs. I do see light at the end of the tunnel due to everyone's help and list of doc's and find this forum to be a huge support and sanity check for such an elusive diagnosis MOST of the medical community either doubt or haven't heard of. It reminds me so much of many diseases/diagnosis considered quackery in the past. It's called the medical "establishment" for a reason...very hard to get these people to wake up, but with all of us getting word out, I'm positive things will improve.

See Melanie's post with the article about ASD/OCD/Tourette's, etc. They are all linked in my mind as well. I say this because when my boys (Asperger's and high functioning autism with some debilitating OCD and some tics) get antibiotics for ear infections, throat infections (with/without strep) and sinus infections, they improve globally. Like most children with PANDAS, they regressed just about overnight after an upper resp infection that was likely strep. The difference is they regressed early and were dx'd with autism. Older children who develop PANDAS are dx'd with OCD, tourettes, etc., and don't always lose speech/language. When my boys lost their speech language and began behavioral regression with odd behavior, they improved each and every time they were on antibiotics. When the antibiotic cycle ended, they had major regression and sickness simultaneously. We, at that time, BLAMED the antibiotics for the regression! Many parents of ASD children still blame antibiotics and yeast. We now know better. It's the short course and subsequenet strep explosion that follows that continues the cycle. I just couldn't get any doctor to take this change in my kids seriously. They ignored the obvious correlation, and STILL DO. I begged them to be on propholaxic antibiotics for chronic ear and sinus infections knowing secretely I was treating them for underlying immune dysfunction where they would improve on antibiotics. I just couldn't get any doc's to do this. Now that I've found this site, I am going to get them proper treatment. We have United Health care, so hopefully, with Dr. C's tests and a diagnosis of PANDAS, we can start the process. I will post when we begin to see improvement. I'm certain I will see it. I'm recording it this time. What I'm not so certain about, is whether it will become a chronic issue for my boys due to family history. If we find they are dealing with one of the CVID or IgG deficiencies, obviously, it will be chronic. But, I have confidence, with IVIG/antibiiotics they will continue to improve while keeping infections at bay. Thanks for your post! Donna

Wow...will be sending to my husband and friends with children on the autism spectrum. Will also print for my pediatrician and take with me on next appointment to children's rheumatologist and ENT docs. Thanks!

My youngest sees a rheumatologist due to an elevated ANA and family history of MULTIPLE rheumatological conditions: i.e., ankylosing spondylitis, ulcerative colitis, Chrone's, Graves, Hashimoto's, Sjogren's, etc. I have Graves and chronic joint pain/slippage of joints/herniations, carpal tunnel, cubital tunnel, etc., they suspect is a connective tissue disorder. The Graves was treated with radioactive thyroid ablation and could write a book about trouble since then. We have blood work right now for him that covers a lot, but no HLA B27. The interesting thing is that my son's rheumatologist mentioned this gene running in families with Rheumatic diseases, but, it's not on my son's lab order?? He also said that there are more that have been found beyond the B27. I definitely think the reason our PANDAS/PITANDS children are responding by creating autoantibodies to Strep or other infections may be due to this...thanks for this post! Donna

Oops...meant ANA! Antinuclear antibody...it was elevated. Considering our family history, it isn't a surprise. But, I'm curious if any other's out there have seen this?

Hi LisaMarie, First, thanks to everyone for very valuable information!! I woke this morning to find replies that are so helpful! Forgive the monologue below, but thought it might help those of us who are dealing with confusing diagnoses: Just my two cents after years of research, discussions with other mom's of children on the spectrum and talking with some doc's: When you compare the list of symptoms/soft neuro signs, psychiatric and behavioral issues in autism with PANDAS or PITAND, they are pretty much the same. Even more compelling are the number of children on the autism spectrum (which is a behavioral label only) who presented initially with sudden onset of regression. IN some cases it happens literally overnight, in other's it's not quite as dramatic, but mom's report "losing" their child in the process during or after an illness. Some "experts" deny the change, but I recently found that many in the field are now conceding to the dramatic changes after comparing old home videos of the before and after. When our kids present with behavioral/cognitive/speech language regression, after normal development, it is during illness that's usually unspecified, but often strep. IN our case, my boys development fluctuates...very similar to the descriptions I've read in this forum of "saw-tooth" pattern. I've called it "roller-coaster" or "fluctuation" in development that coincides with upper resp infections or strep infections. Interestingly, the folks at NIH (where my boys were enrolled in a study briefly) have already confirmed the neuroinflammation hypothesis, and collaborate with Dr. Swedo, but, in our case, never came out and said this could be PANDAS...they said only that Dr. Swedo was their colleague who "coined the term" but nothing further. On other hand, they wer interested in getting my boys into the Minocycline study, so their interest in our case was just for research purposes where variables have to be limited, I suppose. Also, I've found that depending on who you are referred after the illness begins, you will get different diagnoses. Psychiatrists, seeing things like hallucinations, headbanging, spinning, emotional lability, hopping, refusal to eat, irritability, sensory disturbances, hyperactivity and choreoform movements would diagnose either ASD, ADHD, Sensory Integration disorder, OCD, ODD, anorexia nervosa, generalized anxiety, panic disorder, clinical depression, bipolar, psychosis. The speech language pathologist would diagnose Semantic Pragmatic speech disorder, the Neurologist would diagnose dystonia, absence seizures,petit seizures, Landau-Kleffner, etc. You get the picture. Unfortunately, most of us parents who witness these change in our kids, take them to pediatrician who refer us immediately to psychiatry, where the attempt is at symptom reduction only. So, we are unwittingly put on the psyciatric behavioral school treadmill, withot finding underlying medical diagnosis causing neuro symptoms/behaviors. My youngest has unusual eye deviations including rapid blinking, peripheral gaze, eye rolling, etc., that come and go. His neurologist said it was "behavioral." I argued this as it comes on suddenly at times, he's disturbed by it, says "eyes" in a whiney voice, sometimes talks about "purple eyes" then rubs them as though he wants it to disappear. So, that's just one example of the type of ignorance that's out there--among specialists! He's likely either having involuntary movement of eyes or seeing things he can't describe. Nonetheless, I know in my heart it's not behavioral. I question everything these days...we've been through the ringer, as most of you. It's bad enough that we're dealing with daily behavioral/mood fluctuations with good days, then regressions, (mostly in the Fall/winter) but, the chronic illness is driving us nuts. We brace ourselves every August, where by the end, our entire family begins a cycle of sickness that's chronic until about June. EVerything improves in the summer with illness and "autistic/ocd" symptoms seem to improve. Speech language picks up and everyone is happy again. Most other parents of children on the spectrum report the same pattern...fall/winter regression with improvement in summer. Is this due to viral/bacterial load on the immune system prevalent in the fall/winter? Not sure, but it's something I've always wondered about. After reading everyone's posts, I think I'll make sure all of us get tested. I'm not sure, though, at this point if we're all dealing with PANDAS only....my gut tells me we might be a PITANDS situation. I'll also order Dr. C's test kit. Can any of you tell me what specific tests are included? My 5 year old recently got abnormal ABA (antinuclear antibody) result from rheumatologst. He ordered further labs that include the following: Anti-ena (sm/rnp), Anti-ssa/anti-ssb ab, C3 complement, c4 complement, Esr, C-reactive protein, Angotensin converting enzyme level, Anti-dna ds ab, Tsh, CBC, CMP. Have any of your children been found to have elevated ABA's on previous testing? Just curious if that's significant or meaningful among PANDAS/PITANDS children? Does Dr. C collaborate with other doc's like our rheumatologist or pediatrician? That would be a huge help.

I had no idea about Dr. L's family tragedy! That's terrible news! You mention Dr. C's testing. How do I order the test kit? Is there a link? Your son responding overnight is so encouraging. I too, have seen both my boys, during their language regression phase, respond overnight to antibiotics with more frequent language use and dropping of sterotypies like echolalia or verbal stimming/improvement in mood/irritability that's most likely verbal OCD. After the end of treatment, however, regression occurs again. Every time I bring up this correlation, the doc's ignore me. I suppose unless they're immunologists or PANDAS experts, they just aren't connecting dots.. It's so very frustrating that it's dismissed. I suppose I may need to record the incidents and improvement to have them understand how significant it is?

Thanks for the info on PM Johnsmom.! I'll also look into the OCD conference. I have so many friends whose children have OCD and regressive autism who would be interested to know that strep may be the culprit. I'll send on the message and info. I just received an email from a friend unfamiliar with PANDAS who happened to mention frustration that her boy tested + for strep again and the entire family were either carriers or had strep!