ABX

[tygertoo]

Hello everyone!

what is the longest someone has been on a daily abx? My son is going on 70 days with the hope of going on a prophylactic dose soon...

also when is it time to go on a prophylactic dose...70%, 80%, 90% better?? Just wanted to get some others experiences...

 

Thanks!

Karen

[Worried_Dad]

Hi, Karen:

 

Our son has been on the "Saving Sammy" dose of augmentin XR (1000 mg twice daily) for 10 months now... and this is by far the best he's been in 3 years. Sammy Maloney was on this dose for a full year, then dropped down to 500 mg twice daily for another 3 years, which is still higher than the "standard" prophylactic dose. (Dr. K originally had our son on 500 mg of augmentin once daily for prophylaxis, but he still caught infections on that dose.)

 

Don't know when we're going to try dropping the dose - we're pretty scared of losing the momentum and seeing another flare. The rest of our family has been on clindamycin due to elevated ASO titers, too, so we won't consider lowering our PANDAS son's dose until we're confident the rest of us have cleared the strep!

 

Maybe some of the Lyme gurus will comment, but I believe the Lyme-literate docs often have to treat aggressively with multiple, full-dose abx for much longer periods to ensure full recovery.

[tygertoo]

Hi, Karen:

 

Our son has been on the "Saving Sammy" dose of augmentin XR (1000 mg twice daily) for 10 months now... and this is by far the best he's been in 3 years. Sammy Maloney was on this dose for a full year, then dropped down to 500 mg twice daily for another 3 years, which is still higher than the "standard" prophylactic dose. (Dr. K originally had our son on 500 mg of augmentin once daily for prophylaxis, but he still caught infections on that dose.)

 

Don't know when we're going to try dropping the dose - we're pretty scared of losing the momentum and seeing another flare. The rest of our family has been on clindamycin due to elevated ASO titers, too, so we won't consider lowering our PANDAS son's dose until we're confident the rest of us have cleared the strep!

 

Maybe some of the Lyme gurus will comment, but I believe the Lyme-literate docs often have to treat aggressively with multiple, full-dose abx for much longer periods to ensure full recovery.

 

 

 

how old is your son? My son has been on Augmentin 400mg 2x daily - he is 8 and weighs 60 lbs.

[T_Mom]

Hi Karen--

Our oldest d (12) has been on full-strength (as if she had active strep) Amoxicillan for 19 months now (500mg twice a day.)

We are beginning to wean her very, very slowly back to half that dose.

 

Our youngest d (10) has been on Augmentin (strong Saving Sammy dose--of 1000mg of Augmentin XR twice a day) for 9 months. She weighs 75 lbs.

 

We believe the long term use of high strength antibiotics has been KEY to the healing of both girls--OCD was very severe. (Oldest d also had face-stretching ticcing.)

 

Both doing well--thankfully...low-level blips from time to time in the youngest d, but nothing like it was...and the older d is doing 100%, she was very severe and is no longer under the table:)

(a couple of steroid bursts for both along the way.)

Edited July 25, 2010 by T.Mom

[Suzan]

My dd8 has been on daily zithromax for 12 months. It has varied between 250 mg and 500 mg daily. Before IVIG she did best on 500 mg a day (she's 8 and 75 lbs). After IVIG we have weened her to 250 mg but I can't say she's doing very well.

 

Susan

[Worried_Dad]

Our son is 14 now and weighs about 110 lbs.

 

 

Hi, Karen:

 

Our son has been on the "Saving Sammy" dose of augmentin XR (1000 mg twice daily) for 10 months now... and this is by far the best he's been in 3 years. Sammy Maloney was on this dose for a full year, then dropped down to 500 mg twice daily for another 3 years, which is still higher than the "standard" prophylactic dose. (Dr. K originally had our son on 500 mg of augmentin once daily for prophylaxis, but he still caught infections on that dose.)

 

Don't know when we're going to try dropping the dose - we're pretty scared of losing the momentum and seeing another flare. The rest of our family has been on clindamycin due to elevated ASO titers, too, so we won't consider lowering our PANDAS son's dose until we're confident the rest of us have cleared the strep!

 

Maybe some of the Lyme gurus will comment, but I believe the Lyme-literate docs often have to treat aggressively with multiple, full-dose abx for much longer periods to ensure full recovery.

 

 

 

how old is your son? My son has been on Augmentin 400mg 2x daily - he is 8 and weighs 60 lbs.

[smartyjones]

i believe, but do not know so could be wrong, that many lyme drs will treat for 3 months after the cessation of symptoms before beginning to wean.

[tygertoo]

i believe, but do not know so could be wrong, that many lyme drs will treat for 3 months after the cessation of symptoms before beginning to wean.

 

 

I suppose it depends on each dr. I was bitten by a tick (parasite not lyme)and was treated for 30 days. ABX stopped due to no further symptoms...been ok for past 4 months.

[EAMom]

 

I suppose it depends on each dr. I was bitten by a tick (parasite not lyme)and was treated for 30 days. ABX stopped due to no further symptoms...been ok for past 4 months.

 

In acute infections I think 30 days is enough. Chronic lyme is a different story.

 

 

Our dd (not lyme) has been on Azithromycin (full strength 250mg/day, she's 62 pounds now, was 43 when she started) for over 2 years. Before that she was on other abs (augmentin, amoxcillin) for 2 mo.

 

Our immunologist said the Azith. dose would be safe for her for YEARS.

[KaraM]

Our dd8 weighs about 65lbs. Our pediatrician put her at 350mg of Zithromax for 5 days, then 175mg until we could see a specialist (which wasn't for 2 more months). When we finally saw Dr. Bouboulis at the beginning of June, he increased her to 350 mg for a month. Then, after that, decreased her dose to about 200 mg. He wants her to stay on this through the winter (unless she has an exacerbation and we have to do something else). So that will all at up to about a year (at a minimum).

 

She's about 90% back to her old self.

 

Kara

[NancyD]

DD14 has been on daily Abx for 7 years. PenVK and Omniceff worked for the first few years and then stopped. Tried Zith and Amox but yeast was a problem. Since last exacerbation in April DD has been on Augmentin XR and that seems to be working well (w-IVIg and Diflucan).

 

Nancy

[airial95]

Our son (2 1/2 - 29 lbs - little guy) has been on Azith for 181 days now. He did 30days of 100mg per day, and now it's been 151 days at 50mg per day. We did try taking him off 2x for 3 days each - he still needed it, and about 3-4 weeks ago he got a shot of Roceferin (sp?) and did 10 days of 100mg Omnicef to kick a strep infection he got. He's now back on the Azith and we're slowly (but surely) coming out of the ###### that was the most recent strep infection.

 

We talked about uping his current dose in light of the most recent infection, but he's been exposed several times in the last 2-3 months and that was the first infection he actually caught, so we decided to keep it there for now.

 

I know since he's so little, the dosages probably don't mean much...

[AmySLP]

My daughter, almost 6, 50 lbs is taking Augmentin ES 1200 mg/day (600 BID) for nearly 7 weeks now per Dr Bouboulis' recommendation. Prior she had been on Azith for about a month or so with only mild improvment in symptoms. 2 weeks ago when we saw him, he wanted her to stay on it for a few more weeks and see her back (at that time she was 95% better). Well, I tried myself to cut back the dose to 600 mg for a few days to see how things would be- BIG MISTAKE! Even our 14 year old babysitter asked last night to tell her why Allison's hand moves so much...ugh! So I will up her to the regular dose (we are about to go on vacation so I need her the best possbible). Dr. B wanted to see if he could get her 100% better and then hopefully reduce the dose next month somewhat...but then said he'd reassess the ABX in a year. We see him back again in August following our vacation. Last year I did not keep my daughter on a prophylaxis dose of ABX-I will never do that again b/c her symptoms returned much worse 10 months later.

 

Amy