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  1. I started eating a paleo diet about five years ago. It is a commitment in that you can't rely on easy, processed foods. Last summer I started eating a ketogenic diet. Both are do-able. The benefit for me is that aches and pains I've had my entire life are gone. The sinus headaches I suffered from almost daily are gone. In other words, the inflammation I experienced for years is gone. I have not tried the diet with my PANDAS child, but because of the way I eat, she eats far more healthfully than most of her peers. Her PANDAS symptoms are currently mild, although I honestly have no idea why. It's probably easier to try a paleo diet at first, and then if you want you can move to ketogenic.
  2. Is she on steroids for pneumonia? I've known kids on high dose steroids who have gone into psychosis.
  3. I read here all the time, but it's been a very long time since I've posted. My 8 year old daughter has the same symptom as your son. Her "chewing problem," as she calls it, started last March and then went away after a couple months. It's back again, but not as bad. It's not an issue at all until it comes time to eat (she laughs and plays and is completely normal), and then it doesn't seem to be an issue every time she eats. It can go away for several days, or even months, and then come back again. I haven't figured out a pattern. How frustrating to have a pediatrician tell you there's no such thing as PANDAS. I'm glad you got a new one. Anxiety doesn't come on so suddenly. PANDAS is real. My daughter has a whole list of symptoms, but no tics. They came on suddenly after a strep diagnosis, but the most serious symptoms have gone away. If she gets a fever, whether strep or not, I know we'll have a resurgence of symptoms. She's not on long term antibiotics because the symptoms dissipate on their own. That's not to say I wouldn't consider it in the future. Keep digging. Keep trying. I think you're on the right track!
  4. I posted a couple weeks ago about my daughter's symptoms and my suspicions of PANDAS/PANS. Most of her symptoms have resolved except for the feeling she gets when she uses the bathroom and then feels like she still needs to go. She's up, down, up, down on the toilet. She's been wearing either a pull-up or a mini-pad for the last month because she's afraid she's going to wet her pants or leak a little urine. She's so afraid she's going to have bathroom problems at school that she cries every morning and begs me to keep her home until she gets on the bus. (She's in first grade.) What I thought before was general anxiety I think now is specifically related to her bladder issues. We were at the pediatrician a week ago and she tested negative for strep and UTI. The ped is receptive to the idea of PANDAS/PANS, but doesn't know how to proceed. We tried a week on oxybutynin (a bladder relaxer) which didn't help at all. What additional testing does my daughter need? Are there meds we should be trying (she's not on anything right now)? Would it help to see a urologist?
  5. My brain has been going a million miles an hour since I first posted. Thank you for your replies. If I were a younger person I swear I would go back to school and become a neurologist. I've thought this often since my son died, and feel it even more so now. I'm only one person with some hunches and no medical degree to give me credibility, but I offer you this: 2 1/2 years ago I started following a paleo diet. I read and studied everything I could at a blog called Mark's Daily Apple. His whole push is to reduce inflammation in the body by what we eat, the emphasis being that inflammation leads to arterial damage, which leads to the body trying to repair itself by sending cholesterol to repair the damage, which leads to clogged arteries. Reduce inflammation, reduce heart disease. When I changed the way I ate I didn't realize which aches and pains had disappeared. Since my son died I haven't been eating as carefully and discovered that if I eat chips two days in a row I get sinus headaches. I've tested it enough to know there's a direct correlation. The funny part is that I used to get sinus headaches ALL the time and didn't even realize they had stopped. Sinus headaches = inflammation. Yesterday I read an article about the nasal passage possibly being the strep A pathway into the brain. (http://newsroom.cumc.columbia.edu/blog/2015/12/15/strepabrain/) My daughter slept sitting up for the whole month of February because of sinus pain. So, does strep A cause inflammation in the nasal passageway (causing sinus pain), or does general inflammation in the body (caused by food? or something else) cause inflammation in the nasal passageway thereby aiding the strep A in its path to the brain??? I've been in contact with one of the scientists who co-led the study I linked to above. Hopefully he can send me in the right direction to get help for my daughter (who actually seems FINE today).
  6. Hi! I'm new here. My six-year-old daughter has been exhibiting symptoms that have me concerned. Here is her recent medical history: Diagnosed with strep throat 12/14/15. Treated with amoxicillin. Diagnosed with pneumonia 2/2/16. Treated with amoxicillin. Diagnosed with an ear infection 2/24/16. Treated with amoxicillin/clavulanate. On 3/4/16 things went crazy when she had severe urinary symptoms and wouldn't leave the toilet. Finally got her to go to urgent care assuming she had a bladder infection. Negative for UTI. She's been in a pull-up or wearing a pad in her underwear ever since for fear of leaking urine even though she never has. When UTI symptoms didn't resolve, we went back to the ped 3/7/16. Tested positive for group B peri-anal strep 3/8/16. Treated with amoxicillin. Since 3/4 she's had severe anxiety about leaving the house. Missed a fun weekend at a hotel with family that she had been looking forward to. Opted out of a birthday party she had been looking forward to. Refused to go to ballet, which she loves. Refused to go to school for a week, as in, I would have had to take her in her pajamas kicking and screaming. Finally talked her into going, but she only agreed to go if I stayed in the building. She lasted half a day. Back at ped 3/14/06 when she refused to go to school again. Because of hives on her face, doctor switched her from amoxicillin to azithromycin. Doctor said urinary symptoms are not physiological. Gave me information about anxiety in children. She went to school Tuesday through Friday this week, but it's been a struggle. She feels pressure in her throat whenever she eats (reflux?), so she has to take Tums to school with her. On Friday (yesterday) she had a 20 minute meltdown because her socks were bugging her. (And then after school while wearing the same socks she said, "Can I keep these socks forever? They make me feel like I can do anything!") She's been extremely emotional, screaming and stomping off to her bedroom. Also, for the last couple of months she's been afraid to fall asleep by herself, something she never had trouble with before. This anxious, clingy, emotional child is not my child. I don't think her symptoms are severe, but if there's anything I can do to help her, I need to do it. As a little background to our family, my daughter is the youngest of six children. She has a brother who's dealt with some pretty serious medical issues. I'm not a parent who overreacts. I've dealt with enough serious medical stuff that I know not to panic until it's time to panic. Also, my oldest son took his life 17 months ago. Someone suggested my daughter's anxiety is a delayed response to his death. I disagree. She's been plugging along just fine until now. We talk about him. She knows how he died. It's not a topic we avoid. And her anxiety came on very suddenly. Anyway, sorry for the novel. Am I imagining things or does this sound like we're dealing with PANDAS type symptoms?
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