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Dedee

In Tears, Doctor refuses antibiotics for sons PANDAS

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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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Thank you Colleen. My son was doing well on Amoxil for about two or three weeks and now we are seeing some break through tics and anxiety symptoms. My ped said she was going to call Dr. Murphy in Florida for advice and get back to me, but that was a week and a half ago and I haven't heard anything yet. I am to see the neurologist in three weeks, but do not feel hopeful since we have already spoken by phone only to get the suggestion of antipsychotics. Very frustrating. It is looking like I will have to make the 10 hour drive to Gainsville Fl. myself.

 

I appreciate the words of encouragement. I will not give up, till we get what we need. Does your child take any additional supplements?

 

Dedee

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Thank you Colleen. My son was doing well on Amoxil for about two or three weeks and now we are seeing some break through tics and anxiety symptoms. My ped said she was going to call Dr. Murphy in Florida for advice and get back to me, but that was a week and a half ago and I haven't heard anything yet. I am to see the neurologist in three weeks, but do not feel hopeful since we have already spoken by phone only to get the suggestion of antipsychotics. Very frustrating. It is looking like I will have to make the 10 hour drive to Gainsville Fl. myself.

 

I appreciate the words of encouragement. I will not give up, till we get what we need. Does your child take any additional supplements?

 

Dedee

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Print this article out from the link I included below and show it to your doctor. Amoxicillin can work in the beginning, but it has a 25% failure rate. After three courses of Amoxicillin when my daughter had just started getting strep four years ago it stopped working. We the used Augmentin successfully until that did not work anymore. We now use Cehalosporins with great success. If your doctor will not immediately switch your son to a cephalosporin you should take the article to someone who will. It has been proven that penicillins are no longer the best treatment for strep, but unfortunately a lot of doctors are not yet educated on this finding.

 

http://www.medicalnewstoday.com/medicalnews.php?newsid=35136

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Thank you Colleen, Printing as I type. Very good article. I will add it to my collection. I am glad you decided to join and offer your input. It has been very helpful.

 

Sincerely - Dedee

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I ordered the MonoLaurin last week. I could not find it in any stores or anyone who knew any details about it. Has anyone tried it for Pitands or Pandas kids? I called Dr. Sweedo in Florida but never heard back from her as to a Dr.she would refer in Ohio for Pitands. My son keeps bending back his fingers and stretching out the joints in his knuckels.Could this be a symptom of OCD or touretts? He has been viral free for a month and still has symptoms and is hyper. Thanks.

Michele

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