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antibiotic advice, scared to change


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Hello, it has been a little bit since I have been on for advice. There is no where else I can find such good and informed advice.

 

I want to also thank EAmom and others who keep telling their story and giving sound advice. It took months and a few pediatricians, but my son has recovered to about 90/95%. My son has been on zithromax 250g a day for 10 weeks and at around 8 weeks finally started to recover. I think he is somewhere in the middle of PANDAS and RF. All I know is he is able to function as a 12 year old boy again.

 

My problem is I don't want to stop the daily dose in fear that he will relapse. My instinct is to continue for a year as long as liver and gut can stay in check.

 

Or do I at 12 weeks cut back to a prophylactic dose of 500mg or so a week. This is a big weight on myself because I don't want to mess up the improvement we've made, we went through such ######.

 

Thank you, Kathy

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I would definitely stay on 250 a day. I have a feeling too he could relapse in the fall during strep season. I would also plan toconsider IVIG if he does relapse on antibiotics. Also, PANDAS is RF.

Hello, it has been a little bit since I have been on for advice. There is no where else I can find such good and informed advice.

 

I want to also thank EAmom and others who keep telling their story and giving sound advice. It took months and a few pediatricians, but my son has recovered to about 90/95%. My son has been on zithromax 250g a day for 10 weeks and at around 8 weeks finally started to recover. I think he is somewhere in the middle of PANDAS and RF. All I know is he is able to function as a 12 year old boy again.

 

My problem is I don't want to stop the daily dose in fear that he will relapse. My instinct is to continue for a year as long as liver and gut can stay in check.

 

Or do I at 12 weeks cut back to a prophylactic dose of 500mg or so a week. This is a big weight on myself because I don't want to mess up the improvement we've made, we went through such ######.

 

Thank you, Kathy

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Hi Kathy,

have you sent blood to Dr. Cunningham?

 

I would stay at 250mg/day.

How much does your son weigh? Our dd is still on 250mg/day (55 pounds) and the immunologist felt this was a safe dose for her to be on for years.

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What about C dif from antibiotic use? I am wondering after this six month nightmare of bowel issues Andrew and we have been through, could this have been prevented by not being on the Omnicef for two years? I recently read up on C dif and it is very scary. Could there be a connection with the antibiotics? I just think people need to understand there can be risks from long term use. I wish we knew then what we are goin through now. I know Chemar has had issues with her son's bowels also. It is a horrible thing to deal with. Tics are nothing compared to soiling yourself all day long! I need to get a stool sample to see if the c dif is a possibility. Here is a link to read up on c dif. It does not have to come from a hospital. I know Emma posted about it recently on here also. I wonder how her daughter is doing?

 

http://russ429.wordpress.com/#comment-91

 

Michele

 

 

Michele

Hi Kathy,

have you sent blood to Dr. Cunningham?

 

I would stay at 250mg/day.

How much does your son weigh? Our dd is still on 250mg/day (55 pounds) and the immunologist felt this was a safe dose for her to be on for years.

[/quote

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When DD was on 250 x2 a day, she was on it for 9 months straight. She was so wonderfully happy - back to her old self. After we took her off the antibiotics (it was the end of May 2008), she remained "normal" until late September, early October 2008. She reverted back quickly and it just so happened that there was a flu bug and strep running amuck through school. She never seemed to catch them, but that's when she 'tanked'. When we tried to reintroduce the antibiotics, it didn't work after 3 or 4 weeks and we gave up because her moods were becoming more severe.

 

Being desperate, we switched strategies and finally got talked into putting DD on an SSRI (mood stabilizer). It never worked. We decided to give the antibiotics another shot and it wasn't until week 4.5 or 5 that we saw her turn around.

 

During the end of this past May we tried taking her off everything on a doctor's request and that was a big nightmare (I put it out in the forum somewhere), but a long story short, we've got DD off everything and when her moods are back to severe (which usually happens in school - which starts up again 8/10), we plan to send Dr. Cunningham a blood sample to see if she has any luck finding something.

 

Hugs to you and good luck!!

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Just so you know, Dr K has our dose at 500mg twice a week (mon and thurs). Prior to our IVIG our local Dr had us on 250mg for 5 days, then off 5 days, then on 5days ect...Dr K said the 500mg twice a week was enough. And I only speak to Azithromycin. It's an antibiotic that stays in the system longer than others. Thats why you get a Zpack five day, verses a ten day dose with other types...

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On Dr. K's 500 dose 2x per week - be cautiously optimistic with his idea. I just patently disagree with him on that until the child is really stabilized. And now - post-ivig, it has been 9 mos. and he is just stabilized to 100%. I will keep him on the daily dose of Azithro thru this Fall and Winter because he is SO incredibily sensitive to strep microbially - I just don't trust that the IVIG will keep him steady. The immune modulation of Azithro helps him.

 

BUT - you know me guys - hey, some kids aren't as sensitive as Garrett has been. I know, it is a gamble with this illness. I wish there was a clear cut answer.

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