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Everything posted by colleenrn

  1. This is my first post. My daughter was diagnosed at age 5 with PANDAS and is now 10 1/2. We have had MANY ups and MANY downs in the past 5 yeasrs. I am a registered nurse, but new very little about PANDAS. I have had to educate myself about PANDAS to find what works best for my daughter. I am always excited to meet a doctor who even knows that PANDAS exists. Anyway, to make a very long story short, I absolutely empathize with what you are going through. My advice would be to educate yourself by reading anything you can find about PANDAS, calling any health care professional who has dealt with PANDAS, and find a docor ASAP who will put your son on antibiotics and keep him on them for as long as he is benefiting from them. I can't explain why, but there have been SO MANY times my daughter has had a sharp increase in OCD behaviors and tics with a negative throat culture, but has benefited from antibiotics. We had her tonsils and adenoids removed when she was six and she was strep free and OCD/tic free for 1 1/2 years.A few key pieces of advice that were given to me 4 years ago by Dr. Susan Swedo at the NIMH in MD were: 1. Insist that they do a throat culure and grow it out for 72 hrs. For some reason kids with PANDAS do not always have a positive culture after 48 hrs. 2. Have another throat culuture done 3 days after completing the antibioitic. FYI- Amoxicillin has a 25% FAILURE RATE with strep throat. INSIST your doctor put your child on a cephalosporin or Azythromycin, NEVER Amoxicillin Good luck. You can and will find a doctor who will work with you to do what is best for your child. Make yourself the expert and demand what you know your child needs. Colleen
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