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QueLinda

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  1. My son saw Dr. K in Chicago several weeks ago & he put him on 14 days of Augmentin as a test to see if he could have PANDAS. The abx trial is over and we're supposed to e-mail Dr. K with our observations, and then he may have us do a steroid burst as well. I just found out yesterday that I have chronic Lyme -- I'm guessing I've had it for a long, long time, if not from birth, so I could very well have passed it on to my son. I've heard that steroids are a bad idea if Lyme is suspected. Is this true? Why? FWIW my son's symptoms seems to get mildly better at first on the abx, but were p
  2. It's day 13 of the 14-day trial, and I honestly don't know if he's better or not. He's been in the bathroom less (obsessively wiping is one of his symptoms), but he also says he hasn't been pooping as much. I'm wondering if the Augmentin is constipating him -- I know it's supposed to cause diarrhea, but he tends toward constipation with things. And he seems to be washing his hands less, but he still won't use the bathroom towel because it's "too linty." I'm guessing Dr. K will have him do the steroid burst, which I'm not nuts about, but maybe it will give us a clearer picture of what
  3. My son is on a 14-day trial of antibiotics. We saw Dr. K outside of Chicago & he wasn't sure if my son actually has PANDAS or not, but he ordered bloodwork & this trial of abx. We're supposed to e-mail him at the end of it and let him know if we've seen any changes. My son was not severely affected, but definitely had some OCD and anxiety. I think he seems better, but it's not a night and day difference. Do the abx work slowly, if they do work? Is it just too soon to say for sure?
  4. Just got back from taking Henry to see Dr. Kovacevic. Almost four hours in the car total...I'm exhausted & I didn't even drive. Dr. K is a really different kind of doctor -- really messed with the kids, called the boys girls, called them "Mary Lou," asked random questions & circled back to questions he'd already asked. He pretty much ignored me & DH while he talked to Henry. I guess he was trying to provoke a response from him by saying nonsensical things. Then he booted both boys out of the room (the receptionist watched them) to talk to us. He said that Henry is not normal. He
  5. Thanks, bigmighty! I'm a little nervous about it. At the very least, if my son does have PANDAS, we'll have a diagnosis & can go from there.
  6. Wow, thank you for posting that article. I have been giving my son Florajen4Kids which has Lactobacillus acidophilus and his behavior has worsened since I started. Going back to the Custom Probiotics d-lactate free.
  7. Does he push for IVIG? My son is not as bad off as I've read some are, and I'd really like to *just* try antibiotics for awhile -- and hopefully not do IVIG. Will he support that?
  8. Do you think Dr. K will order a throat culture? I'm not sure I could push our doctor for a swab today or tomorrow. I could try...
  9. Thanks. I did e-mail him a timeline for my son before we made the appointment, and he responded saying it was very likely he had PANDAS. I replied to THAT e-mail again saying we'd be seeing him on Monday. So hopefully he'll actually read through it more carefully. Also...I'm reading mixed reviews on him, personality-wise. Just that he's knows his stuff but can be impatient with parents or downright rude. What did you think of him? He's possibly our only shot at treatment for our son if he does indeed have PANDAS, so we'll see him either way. I just want to be prepared.
  10. We just did the blood draw for the two tests. Our doctor indicated she would not do the throat culture.
  11. Has anyone else here seen him? I'd love to hear impressions, what he might ask/order/prescribe. Also, in general, what should I bring or ask? I have the results of the strep blood tests my son had done last week, as well as some other tests he's had done over the years (Organic Acid Test, fructose malabsorption test). I will write down the supplements he's taking now. And I also wrote up a timeline of behaviors to try to make sense of everything. Anything else?
  12. I just made an appointment with Dr. K in Chicago for Monday. We're pulling Henry out of school for the day and my husband is taking off work. I'm going to start a new thread asking what I should bring with me, what to ask, etc. I'm freaking out, but also glad to have a path to walk. Thank you for all your input.
  13. Thank you so much for your replies. I didn't include in the timeline that Henry had colic as a baby, has numerous food intolerances (including gluten & corn) & has always seemed *slightly* on the spectrum to me. He inherited one copy of the MTHFR defect C677T as well (I have two). There are also multiple autoimmune disorders in the family, and I'm being tested for Lyme right now. We're in Wisconsin, and unfortunately I cannot seem to find a practitioner close to us who is PANDAS-knowledgeable. I did e-mail the timeline to Dr. Kovacevic in Chicago, who is about two hours away, and
  14. I keep reading about the extreme cases of PANS/PANDAS, as in Saving Sammy. My son is nine, and can function just fine, but looking back I remember his behavior changing like a switch was flipped when he was about four -- suddenly defiant, aggressive & on sensory overload. He is not like that as much anymore (he still has a bit of SPD and some occasional emotional breakdowns), but it's the OCD symptoms of late that are really worrying me. I wrote up a timeline (including all the times *I* had strep throat) to try to make it clear in my head. I'm sorry that it's long, but if anyone would loo
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