mamakarata

I think it is a factor in our recent flare. Last May my son's eyes got very bloodshot, though not runny or itchy, and with it came a big flare up. This year again, just a week ago, his eyes have been getting red again, and again, a big flare. He has been on azith and augmentin continuously, but still, a big flare. Regular doc had ruled out allergy because no other allergy symptoms. But who knows, he is a-symptomatic to strep, except for his PANDAS (in other words, no sore throat, fever etc), why not be a-symptomatic to allergy except for red eyes and PANDAS behavior? Such an ongoing mystery.

Sort of my feeling too. I don't like groveling. (I want to say) Just give me my RX and shaddup! I hope your good streak with Danny sticks.

Hugs. I leaned on "he'll grow out of it" many times before facing it myself. Because quite frankly, kids do outgrow many things! 5 years later, man that was a long phase! Glad to see the light.

Thank you! I needed a dose of optimism. Because of you, I am sending a note to my ped to give him an update of our success with the RX. He needs to know.

#2- I have this feeling that a few of my friends have had a convo (one of them a nurse) and are concluding that I am being overly sensitive to "normal" phases kids go through. #6 - That sucks. Maybe a pre-req for infec disease peds is callous insensitivity. B/c she had that to the highest degree. Bordering condescending. I am North Calif- and trying to get help within Kaiser. I called one doc from the list and minimum fee was too high. If we weren't able to control it so far with a regular run of RX (cephalaxin worked) then I'd figure out a way. Thanks for the support.

Thanks for your responses. My #9 was edited off (It was funny but inappropriate)- I had a moment of not caring whether they believe it's PANDAS as long as I can get an rx. By the way, our progress for DS,8, is totally positive. His presentation would be considered mild, which, imo, made it hard to detect the pattern, but treatable with a regular run of RX. So our struggle now is locating the infection so the ped will kick us out an RX. I do now have the pleasure of letting his regular ped know that 8 weeks after his first RX for the positive throat strep, that his OCD is gone. NOT b/c of psych, NOT b/c he really didn't have OCD or GA, b/c psych officially dx him, but b/c we got rid of the infection. That is something for him to file away for future reference. Maybe for once, HE'LL be the one advising a parent of the possibility of PANDAS when he sees something similar. Then I will also let him know that he had an anxiety spike 2 weeks ago, which was in conjunction with impetigo- something he has been treated for in the past. So, he will know (as I now know) that something as small as that could elicit anxiety. DH and I are coming to the conclusion that the OCD and GA come only after his overnight presentation of SA/panic goes unchecked. In looking back at the pattern, it was after several weeks of this that he developed OCD, seemingly to cope. In my own research of this, I see a lot more about severe presentation, which made me distrustful of my initial conclusion of PANDAS. It makes me think there are probably a lot more PANDAS kids that go un-DX b/c of mild presentation making it harder to separate from some kind of normal childhood phase. It makes sense that we'd see more severe stories, b/c parents are more desperate. We went years dealing with the mild presentation off/on before understanding the pattern, mistaking it for a "phase" as we know kids go through just normally. Probably not siting anything unique here, but just something I noticed. I wanted to also add about the issue of DH's not believing it. My experience was similar only in that DS was very careful to hide his anxiety from DH as much as he could. So DH wasn't seeing the severity. I was doing more of the night time routine, when the fears were their highest, so struggled more than anyone with DS over this. Consequently, our relationship was greatly affected by this. In good ways, and not so good ways. It wasn't until DH was trying to drop DS off at school, when DS's OCD was at an all time high- and DS couldn't get out of the car for fear that the daytime field trip would somehow turn into an overnight trip- that DH called me later, totally crushed, because he saw firsthand how debilitating his OCD had become. THEN I had the emotional support to get the OCD treated, and found PANDAS in my research of OCD. DH is so much better at abstract conceptualization which, quite frankly, is helpful in detecting patterns of behavior. Being emotionally exhausted (and sort of alone) makes it hard to be sharp enough to detect the off/on pattern. You feel like it has always been this way. When DH jumped in (finally) he was able to point out from a more outside perspective- that his anxiety seemed to come and go, which brought me closer to connecting this to PANDAS. So on one hand, it is good for DH to have been a little removed, but harder to initially come to ANY conclusion. (i.e. frog in boiling pot) Sorry for the ramble. Feels soooo good to post when I can.

1. School. Teacher is barely able to humor me. DS holds it in, so it is hard for her to believe anything I say. 2. Lonely. Friends try to show care, but really don't understand- and quite frankly, seem dismissive. I am not a hysterical type. I did not advertise his behavior as OCD and only started talking about it when I discovered the PANDAS connection. It's a lonely road. I need sympathy. 3. Pediatrician. Is aloof and non-committal. Will humor me with a throat swab. Refers me to pysch who only treats the OCD. 4. Pysche. Has no concept or willingness to treat PANDAS and seems really unconvinced. 5. GIANT INFECTED TOE. On call pediatrician for his GIANT INFECTED TOE refers me to Infectious Disease Doc. I think, "Yay- someone who might know something" 6. Infectious Disease Doc Thinks she is going to crack the cause of his OCD by asking if anything else was going on last summer when his last episode appeared. (Hmm, do you think the pysche is perhaps a bit more qualifed to flush this out IF this was the cause?) 7. Hidden infections. Why can't ds just say "I have a sore throat" so I know where it is? I had NO IDEA that impetigo could be strep. He had it 2 weeks ago -the same time his last anxiety flared up. 8. Hence the crushed hope. for the appt w/infectious disease doc that I would get a game plan in identifying other signs of strep. But infectious disease doc wanted to be a pysche instead. 8. And get this. Each doc- all 3, have asked me "but has he been diagnosed with PANDAS?" Why have 3 different doctors asked ME if my son has been diagnosed. Aren't they the doctors? Thank you. I feel better.