Antibiotics: How low can you go?

[EAMom]

At 90 pounds I would even think about doing 500mg/ day. Or you could split the difference. Get the 500 tabs and alternate between a full tab and a 1/2 tablet for the month (effectively giving 375mg/day).

 

Are you also doing advil? We're back on it and it does help (with brain inflammation I believe....our rheumatologist is the one who recommended we go back on it).

[lismom]

At 90 pounds I would even think about doing 500mg/ day. Or you could split the difference. Get the 500 tabs and alternate between a full tab and a 1/2 tablet for the month (effectively giving 375mg/day).

 

Are you also doing advil? We're back on it and it does help (with brain inflammation I believe, so does our rheumatologist).

 

I have been doing advil. The 375 may not be a bad idea. Did you find it took a little while to see improvements? This is day 7 on zith everyday.

[EAMom]

yes, it takes a while. I don't know if is b/c of inflamation (or b/c it just takes a while to really get rid of the strep). I remember after 5 days of Azith. (she was 45 pounds at that point and getting 250mg/day...so your son is effectively getting 1/2 our dd's dose if he is 90) we were pretty underwhelmed with the change. We did notice that she was yelling at us a bit less, however, so we decided to continue. By 2 weeks, she "decided to get better" and she started eating more normally (ie 3x daily, and then snacks). OCD was significantly better at that point. By 1 mo. she was markedly improved (about 90%)...there was still an "edginess" to her. By 6 weeks her "movements/tics" were finally gone. By 8 weeks she was pretty much normal. This was in August...things started to go downhill after school started again (lots of strep in school, her sister was positive a couple of times, last week I had strep). We mainted the Azith. which kept her at 80-90% even with strep in her environment. Her mood is good and her weight is good. She does exhibit some food restrictions, handwriting decline, tics/movements, tantrum behavior with strep exposure....but nothing full-blown like last spring.

[lismom]

yes, it takes a while. I don't know if is b/c of inflamation (or b/c it just takes a while to really get rid of the strep). I remember after 5 days of Azith. (she was 45 pounds at that point and getting 250mg/day...so your son is effectively getting 1/2 our dd's dose if he is 90) we were pretty underwhelmed with the change. We did notice that she was yelling at us a bit less, however, so we decided to continue. By 2 weeks, she "decided to get better" and she started eating more normally (ie 3x daily, and then snacks). OCD was significantly better at that point. By 1 mo. she was markedly improved (about 90%)...there was still an "edginess" to her. By 6 weeks her "movements/tics" were finally gone. By 8 weeks she was pretty much normal. This was in August...things started to go downhill after school started again (lots of strep in school, her sister was positive a couple of times, last week I had strep). We mainted the Azith. which kept her at 80-90% even with strep in her environment. Her mood is good and her weight is good. She does exhibit some food restrictions, handwriting decline, tics/movements, tantrum behavior with strep exposure....but nothing full-blown like last spring.

 

Thanks for the info. I think I am going to do the 375mg for this next week. If you don't mind sharing, what tics did she have? It sounds like at no point were you able to go the propholactic route of once a week. The thing that confuses me about PANDAS is that it seems that more kids have to be on antibiotics continually not just treated when there is a flair of strep.

[colleenrn]

Deanna-

Maybe your doctor got the NIMH study confused, b/c it was Zith 500mg/week, not penicillin. I agree, penicillin once per week would be very ineffective.

 

Lismom-

My kids have been on Zith since October, and fingers crossed, doing well. My 6 (50#), 8(70#), and 12 (120#)year old are on Zith 250 mg/day. When I see an increase in symptoms (their schools are full of strep cases- worse then ever, so they are constantly exposed to it) I increase the dose to 500mg for my 12 yo.

I agree that it can take a few weeks to see a big improvement. Five days, in my opinion, is usually never enough in PAndas KIDS. I question whether five days is enough in non-PANDAS kids.

Colleen

[EAMom]

I think if we waited for our PANDAS dd to actually get strep (vs prophylactic abs) she would have ended up in the hospital again. It doesn't help matters that there is tons of strep in school this year and her sister is an asymptomatic strep carrier (gets strep with no visible symptoms). Waiting for a strep infection (for my pandas dd at least) would be a bit like closing the barn door after the horse is already out. It took so long for her severe episode last year to get under control...it's just not worth risking going through that again.

 

Also, I should add that many pandas parents notice that their kids don't respond to abs as quickly or completely with subsequent pandas episodes...so preventing an infection in the first place seems to work better overall.

 

My dd's tics are pretty mild...mainly vocal (a throat sound). She also has "measurement movements" which are more like ocd compulsions...she can control them but does them b/c they make her feel better. For example, she does a motion where she feels her back repeatedly (esp. associated with eating). I think she is checking to make sure she is not too fat?

 

Dd's big problem with PANDAS was ocd/tantrums/depression and Anorexia Nervosa. Tics were a pretty minor feature with us but do clue us into the fact that she is having an exacerbation. Interestingly, for us Tics were the last symptom to show up when she got pandas, and also the last to go away with the azith.

[lismom]

Thanks for all the info. I am going to stay positive that the Zith is going to help. My new pediatrician is on board with the Zith and we will take it day by day.

[emma1]

My daughter started with symptoms, but because she was a teen, we didn't think PANDAS. She was then tested for strep, and it came back that she had had an infection. The doctor put her on an antibiotic (think it was amox) and the improvement was dramatic -- I mean night and day! After we finished, there were a few days that she was fine, and then symptoms re-started. We went on PenVK then, I think. Again, major improvement. That lasted a while. Then, ocd! Started zith -- did a z-pac. Dramatic improvement. Stayed on the suppression dose for about 6 mos (two pills every 5 days, I think). Then, our doctor got very concerned (just generally about the long term use) and we went back to PenVK -- and the symptoms did not return. Actually, at some point in there -- not sure when -- the ocd did get worse, and we had to up the inositol. But she is doing amazing now.

[dee45]

Hello,

my doc still won't budge with the Zithromax said I could use PENvk 250mg twice a day. Whats your thoughts.

 

Deanna