Newly diagnosed

[tdmocha]

My 8 year old child had sudden onset of tics, hyperactivity, and high emotions about a month ago. Our doctor immediately suspected PANDAS and did a throat culture and bloodwork. His ASO titers were over 400 and his throat culture was positive. He prescribed 400mg Amoxicillin 7.5ml twice per day. Except for occasional eye ticcing, everything else went away after a few doses. We were thankful. The day he stopped antibiotics he got a fever and flu-like illness that lasted 5 days. He had another throat culture 2 days after stopping antibiotics that was negative. Exactly two weeks after he stopped the antibiotic his tics returned. We went for a throat culture and since it was the weekend the doctor gave us another script for Amox. to take if things got worse over weekend. They did get worse (although not as bad an original episode) so we started antibiotic. Come to find out the culture was negative. Doc originally said to stop if negative but since we stated his symptoms improved, he said to do one dose per day until it's gone. My husband is very concerned about keeping on the antibiotic without an infection and has a message in to ask if we can stop it and start colloidal silver and other natural remedies. He and I are very divided on the issue. Any thoughts on what to do and to keep the peace?

[Chemar]

Hi

bumping up your new post so others can respond

[MaryAW]

If your child truly has PANS or PANDAS, you better get used to having them on antibiotics. My DD has been on them for 2 1/2 years now. Dr. Swedo says that a PANS/PANDAS child should stay on abx until they have been symptom-free for one year. Below is the newly created site for physicians to educate them on the disorders and how to treat them:

 

https://www.pandasppn.org/

 

PLEASE let your husband know that if your child has PANS or PANDAS, the sooner you start treatment the less severe the disorder will be. My DD suffered for 6 months because the doctors we originally went to did not know how to treat PANS. Each exacerbation was worse than the last, with new symptoms. No need for your child (and your family) to suffer. Since she has been on abx and under the care of a knowledgeable dr. she is substantially better. She has several months with no symptoms - and we keep her on the abx the whole time!

 

If your dr. doesn't know how to diagnose/treat, get to one who does ASAP.

[kim]

My husband is very concerned about keeping on the antibiotic without an infection and has a message in to ask if we can stop it and start colloidal silver and other natural remedies. He and I are very divided on the issue. Any thoughts on what to do and to keep the peace?

 

 

I sure understand where he's coming from, but you might want to have your husband read this study

 

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0101257

Antibiotic Treatment Attenuates Behavioral and Neurochemical Changes Induced by Exposure of Rats to Group A Streptococcal Antigen

excerpt (added bolding)

 

The finding that ampicillin treatment reduces some of the deleterious behavioral effects of exposure to GAS is in line with the clinical observation that antibiotic treatment throughout childhood is effective in reducing relapse of SC [5], [10]. In the rat model, antibiotic treatment was effective even though there are no live GAS bacteria, and was not dependent on a reduction in the level of anti-GAS IgG in the sera. Interestingly, in the clinic, antibiotic treatment has been reported to be effective even in patients with low bacterial titers, suggesting that antibiotics may act on more than just the throat bacteria [6].

The prophylactic action of antibiotics may be achieved by their immunomodulatory effects [32] or by their neuroprotective effects.

Edited April 2, 2015 by kim

[kmacdonald34]

I had, and still have, so many concerns about dd being on antibiotics for a long time but they are working and I never want to see her back where she was if possible. So to me the positive of antibiotics outweigh the negative. I have done a lot of reading and the prolonged use of antibiotics can be safe. Hopefully your husband will do some research and realize how important the use of antibiotics are to help with PANDAS/PANS.