Azithromycin

[emma1]

As some know, my daughter had a flare in symptoms (mostly ocd) and so was switched from Pen VK to Azithromycin. She has two more pills to complete the first 5 days (she has taken like a regular antibiotic (6 pills in 5 days), so has gotten a "full" dose as opposed to a low dose. My questions are: (1) For those who have switched to this antibiotic, what did you do after the first five days? My doctor is suggesting one pill every 5 days. Is that enough?? She was on 2 PenVK per day (250 mg); (2) When you started the Azithromycin, were your "good"/"bad" results seen immediately? I *think* I have seen an improvement here, but things aren't perfect. Am I now seeing the full extent that Azithromycin will help my daughter, do you think? (3) Finally, were other supplements helpful/not so helpful with this particular antibiotic? Any advice would be so appreciated.

[ad_ccl]

When we first switched we did a longer run - about 12 days - that was because he had been doing so poorly before and was doing so much better once we switched - and he was about to start the school year - I think the doctor had given us the ok to do 10 days - which is longer than the full dose - and then we added on the extra days as it was a long weekend. I think normally you would do just the regular 5 days - the antibiotic continues to work for another 5 days - so you will probably still see improvements. We usually see a big improvement on day 3 of the antibiotic - but even before that it is clear the antibiotic is starting to work. We are currently doing a full run (last time we did this was last october - so it has been a while). My son started with some obvious tics last week and they were not going away, but instead getting worse so we increased his dose (interestingly I had missed a dose when the tics started - he had been doing so well I was not paying attention) Anyway - after 3 days he is way better so after the 5 day run we will go back to the prophylactic dose. For us there is no question about improvement - when you say you "think" you see improvements - for us it is always dramatic.

[emma1]

Could you please tell me what low dose is for you? Our doctor said one pill every 5 days -- does that sound right?

 

When my daughter started antibiotics, the improvements were DRAMATIC!!!! But this time, the increase was not with tics but ocd (mostly thoughts) -- so I have to take my daughter's word that she is better as it is nothing I can actually see.

[ad_ccl]

we give a 250mg pill every 5 days.

[michele]

Emma, does your daughter have fixed interests or repeat thoughts she verbalizes? Andrew on the meds still is fixated with movies and Webkinz animals and collecting objects. I know your daughter is older but does she display any of these tendencies? His teacher says is he doing better and making transitions easier however is still talking about these things too much. He is distracted by these thoughts so it interferes with his work. I am not sure how he can overcome this. The principal said she sees many spectrum disorder kids with these extreme interests or fascinations. Possibly the CBT talked about here. I am not sure how it works with such little ones though.

 

I still can't believe I could not find a Dr. in Ohio to prescribe the azith without the strep. You are very lucky to find a Dr. who is listening to you. Where do you live?

 

Michele

 

Could you please tell me what low dose is for you? Our doctor said one pill every 5 days -- does that sound right?

 

When my daughter started antibiotics, the improvements were DRAMATIC!!!! But this time, the increase was not with tics but ocd (mostly thoughts) -- so I have to take my daughter's word that she is better as it is nothing I can actually see.

[emma1]

She has only really spoken with me about it once. She said that she will hear or think about something, and not be able to get it out of her head. She will, I believe, just think about it over and over, and not be able to stop, even though she wants to. It is affecting school because she is missing instruction while all this is going on. She used to then want to do something to make it stop (like counting to a certain number, etc.) but she has pretty much stopped all of that (with effort on her part!) -- which is why I didn't know there was a problem until she told me. I thought it was ADD until she explained why she wasn't paying attention.

 

I hope the azithromycin works. I want to try CBT but none of the therapists have even heard of PANDAS, which does have me concerned.

[michele]

I have gotten to the point that for the sake of understanding the PANDAS disorder I just compare it to Tourettes. The symptoms are the same except for the PANDAS episodes are in relation to exposure to strep or viruses. I am starting to believe they are one in the same syndrome. It helps others to understand. As a side note, yesterday I went to the new school for fall to meet with the principal. I asked if she had worked with tourettes kids before. She replied not really but knew of a few in the district. She does have autism kids in the building and several aspergers. However, she offered up the special ed bus to us saying he qualifies based on his disability. I couldn't believe it. She must think he is going to be having problems. I told her he is mild and gets along well with other kids but can get loud on the bus and has had his seat moved before. However, I think the special ed bus is a little extreme. Do you? What 6 year old kid would want that? Of course he'd rather ride with his friends. I mean most people don't realize he has anything. What a way to single him out! I think she seemed a bit nervous to get him, she acted like he is going to need alot of help. When at the school he is at now, they didn't want to make any accomodations. I had to beg for everything he got. Which is only OT once a week!

 

Emma, I think that obsessive thinking is what is causing them trouble at school. If you find a cure for it please let me know! My son knows every detail of his interests (movies) but give him sight words and he is like who cares!

 

Michele

 

She has only really spoken with me about it once. She said that she will hear or think about something, and not be able to get it out of her head. She will, I believe, just think about it over and over, and not be able to stop, even though she wants to. It is affecting school because she is missing instruction while all this is going on. She used to then want to do something to make it stop (like counting to a certain number, etc.) but she has pretty much stopped all of that (with effort on her part!) -- which is why I didn't know there was a problem until she told me. I thought it was ADD until she explained why she wasn't paying attention.

 

I hope the azithromycin works. I want to try CBT but none of the therapists have even heard of PANDAS, which does have me concerned.

[emma1]

Michele, I think this all goes to the fact that most do not really understand the issue at all. I would not do anything to separate your child from his friends, or single him out as different!!!! My daughter has learned to blend, and so I have stopped saying anything as it appears my comments at her current school brought us more problems and no help at all. However, I am concerned about the obsessive thoughts. I thought it was ADD -- she blew a math quiz and usually she is a math whiz. Turns out she had been having these thoughts during classes, and so she missed critical material. Otherwise, I wouldn't have known anything was going on, except that she was acting ever so slightly spacey.

[peglem]

As some know, my daughter had a flare in symptoms (mostly ocd) and so was switched from Pen VK to Azithromycin. She has two more pills to complete the first 5 days (she has taken like a regular antibiotic (6 pills in 5 days), so has gotten a "full" dose as opposed to a low dose. My questions are: (1) For those who have switched to this antibiotic, what did you do after the first five days? My doctor is suggesting one pill every 5 days. Is that enough?? She was on 2 PenVK per day (250 mg); (2) When you started the Azithromycin, were your "good"/"bad" results seen immediately? I *think* I have seen an improvement here, but things aren't perfect. Am I now seeing the full extent that Azithromycin will help my daughter, do you think? (3) Finally, were other supplements helpful/not so helpful with this particular antibiotic? Any advice would be so appreciated.

 

My daughter is on a strange profilactic zith regimen, but her doctor is a "zith" expert, so I'm fine with it. She gets 250mg./day for 5 days(not double dose 1st day, like zpack), then she takes 7 days off. We repeat that. I don't think 1 dose every 5 days would work for my daughter- we begin seeing symptom return on @ day 4 of her "off" period. We see dramatic improvements w/in an hour of her 1st dosage at the beginning of her on cycle. Her doctor's theory is that zith is anti-inflamatory, and that's why it works so well when other antibiotics don't.

[michele]

What sort of Dr is this you see? I wish I could find a zith expert. Anti inflamatory quality makes sense. Wher is your Dr? Thanks for sharing what you have found. Today I am concerned because i called fri for our Omnicef to be refilled another 3 month dose called in. Well yesterday they claimed it had never been called in. Then today I called again and they said it would get called in but thus far it hasn't. I would not want to take the chance of not being on it especially when my daughter has strep symptoms today but was neg to the strep culture rapid in the office. They still gave her an antibiotic though with Andrew's problems. I have pen vk as back up but it doesn't work that well for him. I wish we could get a dose of azith.

 

Emma, how is your daughter today?

 

 

 

Michele

 

As some know, my daughter had a flare in symptoms (mostly ocd) and so was switched from Pen VK to Azithromycin. She has two more pills to complete the first 5 days (she has taken like a regular antibiotic (6 pills in 5 days), so has gotten a "full" dose as opposed to a low dose. My questions are: (1) For those who have switched to this antibiotic, what did you do after the first five days? My doctor is suggesting one pill every 5 days. Is that enough?? She was on 2 PenVK per day (250 mg); (2) When you started the Azithromycin, were your "good"/"bad" results seen immediately? I *think* I have seen an improvement here, but things aren't perfect. Am I now seeing the full extent that Azithromycin will help my daughter, do you think? (3) Finally, were other supplements helpful/not so helpful with this particular antibiotic? Any advice would be so appreciated.

 

My daughter is on a strange profilactic zith regimen, but her doctor is a "zith" expert, so I'm fine with it. She gets 250mg./day for 5 days(not double dose 1st day, like zpack), then she takes 7 days off. We repeat that. I don't think 1 dose every 5 days would work for my daughter- we begin seeing symptom return on @ day 4 of her "off" period. We see dramatic improvements w/in an hour of her 1st dosage at the beginning of her on cycle. Her doctor's theory is that zith is anti-inflamatory, and that's why it works so well when other antibiotics don't.

[ad_ccl]

Hi there,

 

Am I reading correctly, that your daughter gets a 250mg pill once a day for 5 days, then is off for 7 days then has another full 5 day run of 250mg?

When we first started on the prophylactic dose we also saw symptoms on day 4 - so that is why we switched from taking it every 7th day to every 5th day. I agree with the anti-inflammatory properties. We have had good success with once every 5 days - and then increasing to a full 5 day run (including the 2 pills on first day) whenever we see symptoms increase - whether from exposure to strep or viral illness. We are just finishing a 5 day run and his symptoms are pretty much gone - as he is getting older we are finding there is more and more time between needing to give the full dose.

If you are getting symptoms on day 4 - maybe the every 5 days would work for you too? If she improves dramatically within an hour of taking her next dose - she must have symptoms from day 4-7. I seem to remember a while ago someone else talked about their azith experience and they took one pill every 3 days... can't remember for sure - but I guess whatever works is great - it would be nice for her to get a dose that keeps the symptoms at bay for the day 4-6.

[peglem]

What sort of Dr is this you see? I wish I could find a zith expert. Anti inflamatory quality makes sense. Wher is your Dr? Thanks for sharing what you have found. Today I am concerned because i called fri for our Omnicef to be refilled another 3 month dose called in. Well yesterday they claimed it had never been called in. Then today I called again and they said it would get called in but thus far it hasn't. I would not want to take the chance of not being on it especially when my daughter has strep symptoms today but was neg to the strep culture rapid in the office. They still gave her an antibiotic though with Andrew's problems. I have pen vk as back up but it doesn't work that well for him. I wish we could get a dose of azith.

 

Emma, how is your daughter today?

 

 

 

Michele

 

This is my daughter's regular pediatrician(a DO), who I feel very blessed to have come across- he's fabulous. My daughter is a very complicated case: nonverbal and dx'd autistic (her dr. and I feel that autism is a rather worthless dx.) Initially (and before God sent me this dr.) her streppy behaviors were thought to be autistic stims and NOBODY would address them as anything else. We're in Phoenix, AZ. Omicef kills my daughter's stomach.

[peglem]

Hi there,

 

Am I reading correctly, that your daughter gets a 250mg pill once a day for 5 days, then is off for 7 days then has another full 5 day run of 250mg?

When we first started on the prophylactic dose we also saw symptoms on day 4 - so that is why we switched from taking it every 7th day to every 5th day. I agree with the anti-inflammatory properties. We have had good success with once every 5 days - and then increasing to a full 5 day run (including the 2 pills on first day) whenever we see symptoms increase - whether from exposure to strep or viral illness. We are just finishing a 5 day run and his symptoms are pretty much gone - as he is getting older we are finding there is more and more time between needing to give the full dose.

If you are getting symptoms on day 4 - maybe the every 5 days would work for you too? If she improves dramatically within an hour of taking her next dose - she must have symptoms from day 4-7. I seem to remember a while ago someone else talked about their azith experience and they took one pill every 3 days... can't remember for sure - but I guess whatever works is great - it would be nice for her to get a dose that keeps the symptoms at bay for the day 4-6.

 

Yes, that is my daughter's regimen. I have suggested 5days on/ 5days off, but her dr. believes it is safer to do the 7 off. He also checks her liver enzymes every 2-3 months. He wants to make sure the zith has completely cleared from her system before she starts a new round. Day 4 off, she has pretty mild symptoms, but I'm starting to just see them begin. By day six, the OCD is getting to the moderate level. By day 7 we are very glad we can give her the "Zithromagic" tomorrow. Its really only that last day that seems pretty bad, but still compared to pre-treatment days, its not so bad at all. I do think we need time in between to beat back the yeasties as well.

[michele]

This is such an interesting topic! Thank you all for sharing because it really is a look at what is working as far as treatment for PANDAS. I wish they would write a study and document the success that is happening with azith. Has anyone else had a hard time getting the script for it? How did you get the Dr.'sto try it?

 

You say your child couldn't handle the omnicef because it bothered her stomach. The azith doesn't though? Interesting. Did the omnicef help with the ocd? You say the azith helps with the ocd? How do you explain that? Do you think it is because of the anti-inflammation to the brain? It is amazing how off the meds it starts to reappear but gets better right away!

 

This is great stuff! I think you can learn more about PANDAS here then any place else!

 

 

Michele

Hi there,

 

Am I reading correctly, that your daughter gets a 250mg pill once a day for 5 days, then is off for 7 days then has another full 5 day run of 250mg?

When we first started on the prophylactic dose we also saw symptoms on day 4 - so that is why we switched from taking it every 7th day to every 5th day. I agree with the anti-inflammatory properties. We have had good success with once every 5 days - and then increasing to a full 5 day run (including the 2 pills on first day) whenever we see symptoms increase - whether from exposure to strep or viral illness. We are just finishing a 5 day run and his symptoms are pretty much gone - as he is getting older we are finding there is more and more time between needing to give the full dose.

If you are getting symptoms on day 4 - maybe the every 5 days would work for you too? If she improves dramatically within an hour of taking her next dose - she must have symptoms from day 4-7. I seem to remember a while ago someone else talked about their azith experience and they took one pill every 3 days... can't remember for sure - but I guess whatever works is great - it would be nice for her to get a dose that keeps the symptoms at bay for the day 4-6.

 

Yes, that is my daughter's regimen. I have suggested 5days on/ 5days off, but her dr. believes it is safer to do the 7 off. He also checks her liver enzymes every 2-3 months. He wants to make sure the zith has completely cleared from her system before she starts a new round. Day 4 off, she has pretty mild symptoms, but I'm starting to just see them begin. By day six, the OCD is getting to the moderate level. By day 7 we are very glad we can give her the "Zithromagic" tomorrow. Its really only that last day that seems pretty bad, but still compared to pre-treatment days, its not so bad at all. I do think we need time in between to beat back the yeasties as well.

[emma1]

For those on the azith, and had a child with ocd issues, did you notice an improvement immediately? We are on Day 5, and the ocd is still there -- does that mean this is not going to work? What about other supplements -- do you use anything else with the azith? Thanks!!