gemcitygirl Posted November 15, 2010 Author Report Share Posted November 15, 2010 Thank you again guys! Owen seems better as of yesterday, as in no tantrums and very little OCD behavior. HOWEVER- he still raspberries at me, he seems confused a lot. We often play a game where I say a word then he tells me what letter it starts with- he was very good at this before the strep. On the way to preschool I asked him what letter "mom" started with and he was like "k!" then he just randomly went through letters and had no clue. Also before the strep we had been working on his pencil grip- he still uses the palmar grasp. I about had him broke of it, but now he simply can't even try to hold his crayon right. In fact it's like his dexterity is messed up- he keeps dropping his legos and puzzle pieces, and yet it doesn't seem to bother him one bit. But on a good note, he had been seeing "flies and spiders" in his room at night causing him to get in bed with us. I searched his room in front of him before bed last night and told him that there were no flies or spiders or monsters in his room; and if he sees any it's just his imagination being silly. I told him he can kick the monsters butt and tell the bugs to shoo. He seemed to understand and actually stayed in his room all night and didn't give us any grief before bed- that is major. And he told me this morning I was the worlds best mommy, :) I haven't heard that in almost a month! I've missed him so much! But I want to say- hearing these stories about these doctors and pediatricians makes me angry. I'm a force to be reckoned with- my sons doctor told me straight up he won't discuss his behavior until he goes to a neurologist- he insists that PANDAS is a TS only disorder. I was like you need to read up on this- because you're wrong. The doctor recognized and observed my son's OCD behavior and his confusion (not knowing what to call his hands). I mean holy crap is that not enough?? And let me tell you guys, I worked in a large pediatricians practice in medical coding. I sat in break rooms at lunch with the doctors and we had great doctors- but it seems that male doctors in particular have disdain for mothers (and dads at times) sometimes. And really we did have some moms that were pretty ridiculous- so I get it. But, it's like a few of them lack empathy or intuition- the ability to see the child apart from the mothers emotions. There is one doctor there at my old work that may work with us- I left a message for him- he was a real book worm and he's young and likes challenging patients. But I just can't believe the ignorance on this. If a young child wakes up in this condition it should be addressed RIGHT away. I'm furious right now! If this is what my son has- and I'm sure it is- I'm going to work my butt off to make sure people know about this. Even his preschool teachers don't get it, indeed it's very odd sounding- but I'll be printing some stuff off for them and am scheduling a conference with them to discuss this. At the very least they must tell me when a kid comes down with strep so I can closely watch my son. I'm going to get the numbers of the folks who offered. I would love to talk to you all- I think I can get PMs, and I'll PM or email all of you my number. Thanks again! Link to comment Share on other sites More sharing options...
airial95 Posted November 15, 2010 Report Share Posted November 15, 2010 Hang in there - like others who have posted already, my son did not present with any tics at inital onset. It was only when he got strep again this summer (1 yr after initial onset) did he have a tic, and it's only one, and so mild most people don't even notice it. If you have a pediatrician in mind who'd be willing to learn and work with you that would be great. Especially if they're willing to consult with some of the specialists. The specialists are great, but it's also wonderful to have a local presence that you can get into see quickly if you need to. Our pediatrician was the one to dx our son - after we dealt with the "crazy" for 6 months. He is the first to admit that he doesn't know everything, he consults with Dr. Muprhy (the neuropsych at USF who is researching PANDAS and is local for us), and often asks me if there's anything new I've seen or read that I could share. Maybe this young doctor would be willing to take the same attitude and learn! They all have to start somewhere, and if you can get one doctor in your area to open their eyes, think of the other children you'll have helped too!! Link to comment Share on other sites More sharing options...
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