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Wilma Jenks

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Posts posted by Wilma Jenks

  1. My child was sick from day one. In retrospect I saw it the first day in hospital. She would not sleep and was agitated. Took her home and she slithered up my chest onto my shoulder at 5 days old. No joke. At 10 days old she developed a walnut sized lump under her ear. It got worse and worse. Never gets tired. Distorted thinking, agitated, impulsive. Super odd thoughts. Will get super mean if you tell her she is getting big. Never like babies and was very confused about it. Won't come near me, because she said I look really wierd. Not sure if its all PANDAS. Severe OCD and its getting worse. Wishing you the best. Oh, and tons of wax in one ear. I think u mentioned that too.

  2. My child tested possitive for clostridia on the ONE TEST from Genova. We were then told to do a follow up MICROBIAL ORGANICS ACID TEST, to follow up and see if clostridia came back after treating with Vancomycen. Not sure how to read the test, and was wondering if anyone is good at this. I am going 2 schedule a phone consult with Scott Smith on Monday... but I hate waiting for answers. Can I post the results?

  3. If I cancel this trip... all ###### will break lose. And I am not kidding. I am afraid of her aggression to be honest. I always have to tell little white lies, like the trip was cancelled to do bad weather or something. I hate lying 2 my child. Never thought I would have 2 do it, but walk in my shoes and you will see why. I am sure some of u can relate.

  4. FOR SURE TRY THE MELATONIN. Use to work her but now that OCD is out the roof, it stopped. Inositol helped my girl get to sleep although makes her mean during the day. Magnesium helped but made her confused during day. (My child is a tough case though) Right now she is on low dose of seroquel. It helps with sleep but she still tosses and turns. If I go higher her brain races more and she gets mean mean mean. I have not found the magic bullet yet. Night time is the worse these days. My body shakes just thinking about it. Good luck. and hang in there.

  5. OK, I am headed toward IVIG, but was wondering if it is dangerous for my child if it is really not PANDAS or perhaps its other types of infections. I am pretty sure its PANDAS and so is Scott Smith, but I guess you can never be 100% sure, right? Also...if your getting the IVIG for PANDAS, and there IS other infections, are they erradicated too, so to speak? Thanks for any advice u have.

  6. Yes. I believe it is becoming an emergency. Her OCD is starting to go out of control. Scott Smith believes IVIG is the way to go. I have an appointment with Dr. B in Conneticut on April 18th. It use to be that she was very confused and agitated with SOME OCD showing, but now that we treated for Clostridia... she seems less confused and more normal, but the OCD is REALLY REALY bad. Before, she was stuck in front of a TV because she could not function. Now she is able 2 talk and communicte and tell me how severe her OCD is. She is up for hours brushing her teeth. Her gums are raw. She says the same sentence for two ours straight at night and I have to repeat it, but I never seem to get it right. She gets super agressive because I don't get it right. Melationin use to calm her. Not anymore. A low dose (12.5mg) seroquel helps a little, but if I go higher with this stuff, she throws things and REALLY flips. I also have a three day trip planned for Disney World on April 10th. Ugh...I did not see this coming.

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