Would you do this course of treatment? zithromax question

[ajcire]

As I posted previously, I suspect pandas with my ds but his symptoms are far from as serious as so many sound... that said, his dr. had said he didn't think it was pandas based on his titers but when I spoke to him today to let him know that my ds has strep (took him to the regular ped) and that his throat clearing had been back and some mood issues he did say that those things combined with a positive culture overrule the normal titers.... He said he would be very willing to treat him on 3 months of zithromax (2 times a week for 3 months) and that I should use the 5HPT at the same time and that he feels it is a safe treatment despite the prolonged antibiotics and that maybe it will help him let his body heal from being bombarded by strep.

 

My concerrns are probably stupid because I am the one who believes it is pandas but what if I am wrong.. what if it's not pandas and here I have him on 3 months of antibiotic treatment..

 

Help.. I don't know what to do... it's like ds is leading a normal life, nothing outrageous that we can't cope with is going on right now so is it bad to try this?

 

I am so afraid to make the wrong decision.

 

The dr. has called in the script for me.

[peglem]

As I posted previously, I suspect pandas with my ds but his symptoms are far from as serious as so many sound... that said, his dr. had said he didn't think it was pandas based on his titers but when I spoke to him today to let him know that my ds has strep (took him to the regular ped) and that his throat clearing had been back and some mood issues he did say that those things combined with a positive culture overrule the normal titers.... He said he would be very willing to treat him on 3 months of zithromax (2 times a week for 3 months) and that I should use the 5HPT at the same time and that he feels it is a safe treatment despite the prolonged antibiotics and that maybe it will help him let his body heal from being bombarded by strep.

 

My concerrns are probably stupid because I am the one who believes it is pandas but what if I am wrong.. what if it's not pandas and here I have him on 3 months of antibiotic treatment..

 

Help.. I don't know what to do... it's like ds is leading a normal life, nothing outrageous that we can't cope with is going on right now so is it bad to try this?

 

I am so afraid to make the wrong decision.

 

The dr. has called in the script for me.

 

I don't know enough about the 5HTP to comment on that, but would start the 2 meds separately so you can tell the effects of each. I think that is a reasonable regimen for the zith, but I would be sure to treat for yeast at the same time- if your child has biofilm growth and the zith works to penetrate that, you're going to get more than just one microorganism out of the film, frequently yeast is involved there too. my daughter has time in between zith dosages. What I do is nystatin 3x/day always. Also though, when she is on the antibiotic, I give s.boulardii at bedtime (fights bad yeast and clostridia). During her off zith days, I give her Kirkman's Yeast Free at bedtime. So far it seems to be working fairly well.

[EAMom]

Do you know how many mg of Azith. 2x weekly? How much does your son weigh?

 

Personally, if this were my child (although I am biased b/c my dd had such a horrible time with PANDAS)...I would at least initially do the Azith. daily (esp. since both your kids are positive for strep!)

 

Several folks here do Azith. 250mg 1x daily for 30 days (for a 50 pound child), at least initially. I know just starting 2x weekly wouldn't have been enough for my dd. We're still on 250mg/day and we still see mild symtoms when her sister is strep pos.

 

Also, I don't know if these PANDAS kids have a normal immune system, so I don't think we can assume the strep will clear with 5 days of Azith.

 

Are they going to do Azith. once daily for 5 days on your dd (non-pandas, also strep pos.)? Be sure to re-culture her 3 weeks after stopping the Azith.

 

Change toothbrushes a couple of days into the abs.

 

My concern is if you (knowing your kids are strep pos.) start off at the 2x weekly dose then you may have a problem with antibiotic resistance....kind of like what they say will happen if you don't finish your full course of abs.

 

IMO sounds like your son has PANDAS...he appears to meet the diagnostic criteria.

 

Yes, that is the problem...weighing the risks benefits vs. long term abs, allowing another PANDAS episode, or doing IVIG. No fun!

 

Also, be aware that strep carriers do not clear strep as easily as reg. kids...so if your dd is put on something like Amoxicillin (or even Augmentin) it may not clear her. This was our experience.

[ajcire]

Thank you for your input. Both my dd and my ds are currently on a 10 antibiotic, decifer or something like that.. it's not in front of me. I will be continuing that until it is done before starting the 2 times a week of the zith. My ds weighs about 45 lbs I think. He is 6. I don't know the dose as I havent' picked it up from the pharmacy yet.. I will be getting it later. I won't be starting it for over a week as he needs to finish the other antibiotic for the active strep.

 

The dr. told me to get a probiotic to use during the treatment. I also agree about not starting the 5hpt at the same time but he said he often uses it simultaneously with the antibiotic. I don't know.. I could just wait on that and use it after. I agree that I won't know which is really working.

 

To the best of my knowledge neither of my kids are carriers. They have both had negative cultures. My dd always has symptoms when she has strep.. usually a high fever and sore throat, one time just a tummy ache that lasted a while so they cultured her, and this time just a sore throat but symptoms none the less. My ds is the one that doesn't show the symptoms but he has had negative cultures many times.

 

It seems my dd gets strep relatively often in that this is her 4th time this year. I can't help thinking it's just a cruel thing to have a child who is prone to strep and a child who reacts to it... I consider myself very lucky that my ds seems mild and my heart just goes out to those of you whose children have more extreme cases. I just keep holding my breath though waiting for my ds to show more symptoms.

 

You guys are so patient and great and answering questions while I talk this think out in my head!! It's hard when you have nobody in real life to bounce this off of because they just don't get it.

 

 

 

 

 

 

Do you know how many mg of Azith. 2x weekly? How much does your son weigh?

 

Personally, if this were my child (although I am biased b/c my dd had such a horrible time with PANDAS)...I would at least initially do the Azith. daily (esp. since both your kids are positive for strep!)

 

Several folks here do Azith. 250mg 1x daily for 30 days (for a 50 pound child), at least initially. I know just starting 2x weekly wouldn't have been enough for my dd. We're still on 250mg/day and we still see mild symtoms when her sister is strep pos.

 

Also, I don't know if these PANDAS kids have a normal immune system, so I don't think we can assume the strep will clear with 5 days of Azith.

 

Are they going to do Azith. once daily for 5 days on your dd (non-pandas, also strep pos.)? Be sure to re-culture her 3 weeks after stopping the Azith.

 

Change toothbrushes a couple of days into the abs.

 

My concern is if you (knowing your kids are strep pos.) start off at the 2x weekly dose then you may have a problem with antibiotic resistance....kind of like what they say will happen if you don't finish your full course of abs.

 

IMO sounds like your son has PANDAS...he appears to meet the diagnostic criteria.

 

Yes, that is the problem...weighing the risks benefits vs. long term abs, allowing another PANDAS episode, or doing IVIG. No fun!

 

Also, be aware that strep carriers do not clear strep as easily as reg. kids...so if your dd is put on something like Amoxicillin (or even Augmentin) it may not clear her. This was our experience.

[Dedee]

Erica,

 

I am sure you struggle with the decision. Especially since your child does not seem to be overtly affected at this point. The problem is, you have no way of knowing how he will react to future strep episodes. My experience has been that it ranges from mild symptoms to full blown explosive tics and behavior changes. My son went undiagnosed for years. His OCD was being treated with SSRI's and no strep prevention. Over the years he would develop strep and have a range of reoccuring symptoms. The worst happened two years ago, after he had suffered from four strep episodes over a four month period. The first three didn't cause huge issues, only an increase in anxiety, study problems, sleep issues, the usual. However two days into the last episode he got up one morning with abrupt onset of explosive tics. He had never had an issue with tics before this day. It was devestating for him and our family. Thank goodness we were able to get a proper diagnosis and treatment, and find support here. So in a way, the tics were a blessing in that it led us to a treatment plan that has made a huge difference for our son. My point is though that you can never predict how a child will react from each episode. It is frustrating to think of all my son had to go through for years before we got the proper diagnosis and treatment. I think it is easier to prevent the episode than to try to reverse the damage that can occur as a result. Each situation is different and we all make different decisions based on what we feel is best for our kids. Good luck with your decision. Keep us informed.

 

Dedee

[ajcire]

Dedee, thank you for that. We have decided that the risk of not trying this is worse than the risk of him being on the antibiotics.

 

Of course my mother asked me a question that I had no idea of the answer to... What happens after the 3 months on it.. then what.... do I just pray he doesn't get near any strep or we start from scratch or is it possible it will no longer be an issue.

 

 

Erica,

 

I am sure you struggle with the decision. Especially since your child does not seem to be overtly affected at this point. The problem is, you have no way of knowing how he will react to future strep episodes. My experience has been that it ranges from mild symptoms to full blown explosive tics and behavior changes. My son went undiagnosed for years. His OCD was being treated with SSRI's and no strep prevention. Over the years he would develop strep and have a range of reoccuring symptoms. The worst happened two years ago, after he had suffered from four strep episodes over a four month period. The first three didn't cause huge issues, only an increase in anxiety, study problems, sleep issues, the usual. However two days into the last episode he got up one morning with abrupt onset of explosive tics. He had never had an issue with tics before this day. It was devestating for him and our family. Thank goodness we were able to get a proper diagnosis and treatment, and find support here. So in a way, the tics were a blessing in that it led us to a treatment plan that has made a huge difference for our son. My point is though that you can never predict how a child will react from each episode. It is frustrating to think of all my son had to go through for years before we got the proper diagnosis and treatment. I think it is easier to prevent the episode than to try to reverse the damage that can occur as a result. Each situation is different and we all make different decisions based on what we feel is best for our kids. Good luck with your decision. Keep us informed.

 

Dedee

[amy s]

Dedee, thank you for that. We have decided that the risk of not trying this is worse than the risk of him being on the antibiotics.

 

Of course my mother asked me a question that I had no idea of the answer to... What happens after the 3 months on it.. then what.... do I just pray he doesn't get near any strep or we start from scratch or is it possible it will no longer be an issue.

 

 

I agree with the course of antibiotics if you believe and the doctor thinks he has PANDAS. (but am unaware the dose for zith) And as far as after 3 months on it.... as soon as he goes off it and if you see ANY changes in behavior, etc, then you go back to the doctor and report the behaviors (possibly strep culture? etc). Otherwise yeah, pray that he doesn't go anywhere near strep. I doubt that if it is pandas that 'strep will no longer be an issue' after 3 months of antibiotics. Good luck!!!!