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Hi all

For those whose children have been on Keflex can you please tell me what dose you use as a treatment dose and also the dose that has been used prophylactically? My son has been great with Keflex 1000mg being prescribed when he has a breakthrough but he is on 250mg a day prophylactically and seems to get a breakthrough on average every 2 months. When he does he goes on to the full dose and things usually clear up in about 10 days. He does always have low grade tics though. I am concerned that this cycle is not ideal and wonder if we should be using a higher dose as a prophylaxis. Feedback from others would be appreciated. It was 2 years ago now that he got his first big breakthrough and although it is being managed I am wondering if this will ever go away. It is hard to know how other children have fared as it seems that people just stop posting after a while. Does anyone know of children who have had this and it has resolved after puberty as I have been advised is often the case?

Jules

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Our ds is 12 and approx 68 pounds. We did keflex for about 1 1/2 years (started June 2009 - stopping in Jan 2011). Our treatment dose was 1,000 mg (taken as 500 mg twice a day) and the prophylactic dose was 500 mg (taken as 250 mg twice a day). We also had to go back and forth a lot between treatment and prophylactic dosing.

 

In Sept 2010, it seemed keflex was not working anymore and we switched to amox for approx 30 days. Amox seemed to help at first, but then seemed to also stop working. We went back to keflex with some success until Jan 2011, then we felt it was not working again. We tried clindamyacin and had bad reactions. End of Jan, we stopped all abx because nothing was working and his body just seemed overwhelmed - just wanted to give him a break.

 

We did some keflex again at the beginning of March and it helped to decrease symptoms. Yesterday, we found out he appears to have an unresolved myco p infection so now we are off keflex and switching to doxycycline. We also identified 2 other bacteria in his gut that are resistant to keflex, but the doxycycline should help to resolve.

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Swim

 

Thank you for your response. My son is almost 10 and weighs about the same as your ds so I am wondering if the 250 mg is too low a dose for prophylaxis. He hasn't always been on Keflex prophylactically - initially he was on 250mg abocillin daily with the 1000mg Keflex reserved for increased symptoms due to strep exposure. Our specialist felt we should keep the Keflex as treatment as we knew it worked and not use it prophylactically as he didn't want son to build up resistance to it. When he however built up resistance to the penicillin my GP suggested the prophylaxis of Keflex. Part of me is wondering if I should take the route you have taken and keep him off the antibiotics altogether and only use when he gets a symptom flare. I am worried whichever decision I make it might be the wrong one though. I think I will keep him on the prophylaxis for another 12 months and then take him off altogether.

 

Have your son's symptoms got worse or are they reasonably stable? My son's have never been as bad as they were at the first outbreak and he really has only had about 4 outbreaks since but the tics have never fully resolved. When he first went onto the antibiotics there was a 6 month period where everything was so mild had I not known he had tics I don't think I would have picked it up. At that time I thought everything was going to go, but then he got another strep infection and we got a flare.

 

It's a constant worry isn't it.

 

Best of luck to you and your son for the future.

 

Jules

Edited by jules41
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I am not sure I can be much help since we feel like we are in a big guessing game ourselves, but I know that hearing the experiences of others can help. I would think that 250 mg once a day of keflex might be too low a dose for prophylaxis. Maybe try 250 mg twice a day and if symptoms improve over time you can try to reduce back down to 250 mg once a day again.

 

Have our son's symptoms gotten worse or are they stable ... interesting question. We have been dealing with PANDAS/PITAND for about 8 years, but did not identify it as that until June 2009. Looking back 8 years ago, it was very difficult (tics, OCD, paranoid behavior, touch sensitivities, bed wetting, joint pain, difficulty sleeping, etc). Somehow we got lucky and he improved without antibiotics. Instead, we were treating him for metals, candida, mineral deficiency and food alergies. After about 2 1/2 years, we were just left with tics that came and went and mild OCD that other people would never notice (he has to rub his hands on the pages when he reads a book). Starting keflex in 2009 allowed him to go the last 1 1/2 years with very few tic episodes. When there was an episode, increasing keflex from 500 mg a day to 1,000 mg a day always helped until recently. Note that we also had his tonsils and adenoids removed April 2010. For about 4 months after the surgery, he was symptom free.

 

Since January, things have been different. Symptoms seem to improve/worsen every few days or even from day to day. This makes me think we have something else going on, which might very well be related to the myco p infection and 2 other bacteria we just found in his gut. When we took him off abx in Feb, his tics did not worsen as we expected. We are on day 2 of our new antibiotic for myco p and supplements, but of course he woke up yesterday with a stuffy nose and sore throat ... So, I guess it will be longer before we know if the new protocol is having any affect. Argh!

 

Not sure I helped, but maybe think about 250 mg twice a day as a prophylaxis and then try 250 once a day if he can be stable for a nubmer of months at 500 a day. Just a guess based on our experience, but every child is a bit different. Good luck. It will be interesting to hear how things go!

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