Jump to content
ACN Latitudes Forums

I need advice


Recommended Posts

Hello All,

I need some advice. I am living in Saudi Arabia, which some of you may have already read before. My son has been in the midst of a severe exacerbation of what I am now sure is PANDAS. He was on a huge downward slide and thank God we managed to snatch him back from the brink just in time. After a phone consultation with a specialist there, he was started on Biaxin 500mg BID and I noticed a significant improvement after just a couple days. Encouraged by this, I consulted with a Ped. Neuro. here and we agreed that since my son still had significant issues even with 50% improvement, we would go for a 5 day steroid burst. He finished the 5 day burst a couple days ago now. Yesterday, he was even better. I can't believe it. My question is, I can't get the doctor to return my emails or tell me what to do now. Should I continue with Biaxin at the same dose and for how long? Should I expect a rebound after the steroids have worn off? What to do???? I am alone here and not quite sure what to do until I can get in touch with either the current doctor there or another doctor. I am planning to try calling his office next. Can anyone tell me what the usual treatment would be? It seems from what I have read that sometimes the antibiotics are switched around, but usually continued for around a month or longer. I am assuming that since we have had a positive response with Biaxin we would continue with that, but the response is not 100%. So does that warrant switching to something else or continuing with the same? My son has been sick for so long without a diagnosis I really want to be aggressive. He has finished about 12 days of Biaxin so far. Thanks for any advice!

Link to comment
Share on other sites

Hi, not quite sure how to give advice here. You do need a doctor you trust to be your primary advisor.

 

In general, a 5 day prednisone treatment is used by many doctors as a diagnostic tool and not as therapy. This means that symptoms that are auto-immune or due to inflammation generally return post burst. There are some studies that longer pred does bring some relief in other ailments, but the use of pred is not well studied for PANDAS.

 

Biaxin (Clarithromycin) is a very good antibiotic but there are some concerns of liver or kidney damage with long term use. Biaxin has excellent penetration and in most patients is effective at a wide range of bacterial infections (particularly skin infections).

 

Most on this forum are on either Azith or Augmentin, but again you really will need a pediatric or immunologist to advise you here. It's great you've had symptom remission.

 

Regards,

 

Buster

 

 

Hello All,

I need some advice. I am living in Saudi Arabia, which some of you may have already read before. My son has been in the midst of a severe exacerbation of what I am now sure is PANDAS. He was on a huge downward slide and thank God we managed to snatch him back from the brink just in time. After a phone consultation with a specialist there, he was started on Biaxin 500mg BID and I noticed a significant improvement after just a couple days. Encouraged by this, I consulted with a Ped. Neuro. here and we agreed that since my son still had significant issues even with 50% improvement, we would go for a 5 day steroid burst. He finished the 5 day burst a couple days ago now. Yesterday, he was even better. I can't believe it. My question is, I can't get the doctor to return my emails or tell me what to do now. Should I continue with Biaxin at the same dose and for how long? Should I expect a rebound after the steroids have worn off? What to do???? I am alone here and not quite sure what to do until I can get in touch with either the current doctor there or another doctor. I am planning to try calling his office next. Can anyone tell me what the usual treatment would be? It seems from what I have read that sometimes the antibiotics are switched around, but usually continued for around a month or longer. I am assuming that since we have had a positive response with Biaxin we would continue with that, but the response is not 100%. So does that warrant switching to something else or continuing with the same? My son has been sick for so long without a diagnosis I really want to be aggressive. He has finished about 12 days of Biaxin so far. Thanks for any advice!

Link to comment
Share on other sites

Thanks Buster. I wasn't aware of the potential for damage related to Biaxin usage. I guess that answers the question of why most people are on Azith or Augmentin. I will keep trying to get the doctor. Thanks for the input.

 

 

 

Hi, not quite sure how to give advice here. You do need a doctor you trust to be your primary advisor.

 

In general, a 5 day prednisone treatment is used by many doctors as a diagnostic tool and not as therapy. This means that symptoms that are auto-immune or due to inflammation generally return post burst. There are some studies that longer pred does bring some relief in other ailments, but the use of pred is not well studied for PANDAS.

 

Biaxin (Clarithromycin) is a very good antibiotic but there are some concerns of liver or kidney damage with long term use. Biaxin has excellent penetration and in most patients is effective at a wide range of bacterial infections (particularly skin infections).

 

Most on this forum are on either Azith or Augmentin, but again you really will need a pediatric or immunologist to advise you here. It's great you've had symptom remission.

 

Regards,

 

Buster

 

 

Hello All,

I need some advice. I am living in Saudi Arabia, which some of you may have already read before. My son has been in the midst of a severe exacerbation of what I am now sure is PANDAS. He was on a huge downward slide and thank God we managed to snatch him back from the brink just in time. After a phone consultation with a specialist there, he was started on Biaxin 500mg BID and I noticed a significant improvement after just a couple days. Encouraged by this, I consulted with a Ped. Neuro. here and we agreed that since my son still had significant issues even with 50% improvement, we would go for a 5 day steroid burst. He finished the 5 day burst a couple days ago now. Yesterday, he was even better. I can't believe it. My question is, I can't get the doctor to return my emails or tell me what to do now. Should I continue with Biaxin at the same dose and for how long? Should I expect a rebound after the steroids have worn off? What to do???? I am alone here and not quite sure what to do until I can get in touch with either the current doctor there or another doctor. I am planning to try calling his office next. Can anyone tell me what the usual treatment would be? It seems from what I have read that sometimes the antibiotics are switched around, but usually continued for around a month or longer. I am assuming that since we have had a positive response with Biaxin we would continue with that, but the response is not 100%. So does that warrant switching to something else or continuing with the same? My son has been sick for so long without a diagnosis I really want to be aggressive. He has finished about 12 days of Biaxin so far. Thanks for any advice!

Link to comment
Share on other sites

Which doctor (i.e. the doctor here or the ped. neuro there) hasn't returned your call. I am pretty sure that Dr. Trifiletti will do phone consultations. Dr. K may, too.

 

I need some advice. I am living in Saudi Arabia, which some of you may have already read before. My son has been in the midst of a severe exacerbation of what I am now sure is PANDAS. He was on a huge downward slide and thank God we managed to snatch him back from the brink just in time. After a phone consultation with a specialist there, he was started on Biaxin 500mg BID and I noticed a significant improvement after just a couple days. Encouraged by this, I consulted with a Ped. Neuro. here and we agreed that since my son still had significant issues even with 50% improvement, we would go for a 5 day steroid burst. He finished the 5 day burst a couple days ago now. Yesterday, he was even better. I can't believe it. My question is, I can't get the doctor to return my emails or tell me what to do now. Should I continue with Biaxin at the same dose and for how long? Should I expect a rebound after the steroids have worn off? What to do???? I am alone here and not quite sure what to do until I can get in touch with either the current doctor there or another doctor. I am planning to try calling his office next. Can anyone tell me what the usual treatment would be? It seems from what I have read that sometimes the antibiotics are switched around, but usually continued for around a month or longer. I am assuming that since we have had a positive response with Biaxin we would continue with that, but the response is not 100%. So does that warrant switching to something else or continuing with the same? My son has been sick for so long without a diagnosis I really want to be aggressive. He has finished about 12 days of Biaxin so far. Thanks for any advice!

Link to comment
Share on other sites

Buster,

 

Could you please clarify, those concerns you mentioned regarding potential liver and kidney damage for long-term use, are those concerns specifically related to biaxin (clarithromycin), or to all antibiotics?

 

Michael

 

All antibiotics carry some concerns here, the exact text for clarithromycin reads "Hepatic dysfunction, including increased liver enzymes, and hepatocellular and/or cholestatic hepatitis, with or without jaundice, has been infrquesntly reported with clarithromycin. This hepatic dysfunction may be severe and is usually reversible."

 

Buster

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...