zithromax dosage

[MMC]

I recently posted about Mycoplasma in our ds12.

 

http://www.latitudes.org/forums/index.php?showtopic=9457&st=0&p=79382&hl=mycoplasma&fromsearch=1entry79382

 

He has finished the zithromax (250mg for 2 weeks) and is back on 250mg pen vk daily. He started school 8/25 and is doing relatively well. He still has plenty of tics but is in good spirits and has been able to complete homework. It is hard to judge if the zithro has helped or not, but I remember many here have seen good results after being on zithro long term. And I read this article yesterday and watched this video...

 

http://intramural.nimh.nih.gov/pdn/pubs/pub-9.pdf

(article compared zithro and pen and pointed to pen as a "safer" prophylax)

 

http://www.thedoctorsvideos.com/video/14805/PANDAS--Azithromycin--Zithromax

 

If we can get a doctor to prescribe, would lke to try zithro for several months for ds12 and dd14 (has had PANDAS for 9 yrs). Dd is also on pen vk, 500mg...she weighs 115 lbs. Ds weighs 75 lbs. Dd is struggling b/c of increased tics from her ADD med and stress of school and possible virus. She had a good summer while off ADD med, but the combination of school and the med (vyvanse) has us worried...are calling doc today to get a new Rx, reducing the dosage.

 

Looking for suggestions on dosage, duration (4 mos, 6 mos?) and any comments or experience with zithro. Not sure who we can get to prescribe this. Our current neurologist hasn't leaned towards antibiotics. We get the Pen vk from Dr Latimer, but we are in NC and it is hard (and expensive) to go to Bethesda. Thanks in advance for any input!

[Fixit]

I recently posted about Mycoplasma in our ds12.

 

http://www.latitudes.org/forums/index.php?showtopic=9457&st=0&p=79382&hl=mycoplasma&fromsearch=1entry79382

 

He has finished the zithromax (250mg for 2 weeks) and is back on 250mg pen vk daily. He started school 8/25 and is doing relatively well. He still has plenty of tics but is in good spirits and has been able to complete homework. It is hard to judge if the zithro has helped or not, but I remember many here have seen good results after being on zithro long term. And I read this article yesterday and watched this video...

 

http://intramural.nimh.nih.gov/pdn/pubs/pub-9.pdf

(article compared zithro and pen and pointed to pen as a "safer" prophylax)

 

http://www.thedoctorsvideos.com/video/14805/PANDAS--Azithromycin--Zithromax

 

If we can get a doctor to prescribe, would lke to try zithro for several months for ds12 and dd14 (has had PANDAS for 9 yrs). Dd is also on pen vk, 500mg...she weighs 115 lbs. Ds weighs 75 lbs. Dd is struggling b/c of increased tics from her ADD med and stress of school and possible virus. She had a good summer while off ADD med, but the combination of school and the med (vyvanse) has us worried...are calling doc today to get a new Rx, reducing the dosage.

 

Looking for suggestions on dosage, duration (4 mos, 6 mos?) and any comments or experience with zithro. Not sure who we can get to prescribe this. Our current neurologist hasn't leaned towards antibiotics. We get the Pen vk from Dr Latimer, but we are in NC and it is hard (and expensive) to go to Bethesda. Thanks in advance for any input!

 

again..i'm not the parent...can you take her off the add med..and see if the abx adjusts some of the add stuff

 

ps..in combination..no carbs in morning..high protein..NO dyes, ever..if she is not bad maybe this would be enough to take edge off

Edited August 27, 2010 by Fixit

[MMC]

Thanks fixit. Yes, it would be best to get her off the med, but it has helped tremendously in past years. Her dosage was increased this time, so we are hoping a decrease will help...calling doc today. She says she just can't focus in school without it. Good idea on the diet. We are focusing on diet for ds but have not tried with dd...we probably should.

 

We are just really curious to see what zithro would do...she has never been on it.

[Megs_Mom]

Even very low doses of azith do a lot for us. We are currenly considering raising it, but have some other health issues to try to deal with first. I lean towards azith being anti-inflamatory. Our daugher also has a very classic response to Prednisone and Motrin. Does you dd have a good response to anti-inflams? Since you have seen Latimer, you might want to schedule a phone consult to discuss with her. Just as expensive from an appt standpoint, I think, but minus the flights, car, etc. Not 100% sure if she is doing this, but I think so.

 

We are in NC too - Charlotte area.

[PANDAS_Denmark]

Hi,

 

I once asked Dr. T. about Zithromax-dose and got the following answer :

 

"Dear Dr. T

 

Thank you SO very much for all of your hard work helping PANDASkids and their families !

It is VERY MUCH appreciated ! Not only nationally but also INTERnationally !

 

I noticed, that you write in one of your latest replies about Zithromax, that the usual dose is 12-20 mg/kg. Giving an example of a kid with a weight of 32 kg the dose should be 380-600 mg per day.

 

I have tried to find guidelines/litterature, that confirms that this is the right dose, when Zithromax is used prophylactically, for instance following rheumatic fever. However I have not been able to find any such guidelines/litterature (and I am sad so say, that the local doctors aren´t of any help).

 

Are you aware of any such guidelines/litterature, that propose or supports the prophylactically use of a dose of 12-20 mg Zithromax/kg per day for instance following rheumatic fever (if not PANDAS)? Guidelines/litterature, that a parent (like myself) could print out and bring to the local doctor when arguing for at least giving it a (best) try ?

 

Once again : Thank you so very much !

 

Best regards,

PANDASDenmark"

 

Dr. Ts reply :

 

"Here is a good resource

http://www.rxlist.com/zithromax-drug.htm

see "dosages and indication". For tonsillitis, 12 mg/kg is used, whereas 10-30 mg/kg is used in other indications. For PANDAS, I use 12-20 mg/kg."

 

Source : http://pandas.yuku.com/topic/135

 

Best wishes,

PANDAS_Denmark

[Lori Ann]

Where are you in NC? I am near Charlotte and have found both a pediatrician and a neuropyschiatrist who help me with abx prescriptions. I have an appt. with Dr. L in October. My DS 7 is on 500mg/day and we have only seen mild changes since he has been on it (two weeks) His neuro thinks he will be on it for a very long time should his CamKin II come back positive (any day now).

[kimballot]

Hi MMC -The video you found was posted by Dr. MDK (I don't know why it is not clear on the website you found it on). It is part of his series on PANDAS that can be found on his new PANDAS page http://drmdk.com/html/pandas.html

 

I noticed the other day that he posted a PANDAS protocol for using zithromax. Look on the right side of the page - the link is in purple and it is not very big.

 

This is Dr. Schulman's protocol, though it is not stated that it is hers.

 

She recommends 10mg/kg of zith - you can read how she decides how long to keep the kids on it... it has to do with how long she is seeing clinical improvement.

 

10mg / kg would get to 500mg exactly at 110lb, so if you child is anywhere near there, this protocol may help you make your case.

 

I do want to warn you (and other parents), though, that this is just based on here experience and there is NO CONTINGENCY here for anything but zithromax. She doesn't say not to try other meds or not to move on to IVIG... and she does talk about the benefits of those in the videos... but the protocol is just her zithromax protocol. So, if you give this to a doc and then go back and ask for augmentin or biaxin when there is another problem, my fear is that a doc who is not comfortable with abx for PANDAS in the first place might say "no - it is not in the protocol". So - although I think it is great that Dr. MDK is trying to help us - that is my disclaimer here!

 

Best wishes!

[EAMom]

Is it Dr. Latimer that is rx'ing the 250mg pen daily? Is this 250mg pen once a day? I am confused why she would do this. Even Dr. Swedo said (in one of the videos) that Pen MUST (due to its short half-life) be given 2x daily to be effective. If a dose is missed, you child is essentially unprotected for several days.

[MMC]

Meg's Mom...ds does have a good response to anti-inflammatories, prednisone helped a lot. And I give him children's ibuprofen every morning to help during school. Dd did not have much response to prednisone, but her symptoms are milder anyway, (lately have ramped up as posted, so would be interesting to see what pred would do now). Phone consult w/ Dr. L is a good idea, might just try to arrange this if she is still doing them.

 

PANDAS_Denmark...thanks for the post from Dr. T. I was able to find more posts on his website by searching on zithromax.

 

Lori Ann...we are near Raleigh. Let me know or PM me the name of the doctors you see in Charlotte that are willing to prescribe abx. My wife has family in Charlotte, and we are seeing Dr. Corbier at his Concord office, but don't think he is big on abx.

 

kimballot...yes, I have watched all of Dr.mdk's videos on PANDAS and am most impressed with Dr Schulman. She is in Brooklyn, NY. If she were nearer to NC, I would make an appt asap. I just looked at the PANDAS protocol for using zithromax on the website...great info, thanks, I hadn't seen that. Ds has been on high strength Augmentin for 5 weeks and it had no effect that we could tell. I'm ready to try high strength, Zithro for 4 months or so, (for both ds and dd). I have heard it can lead to hearing damage, so maybe back to pen after 4 months

 

EAMom...yes, this is from Dr L, 250mg once a day. I have recently learned about pen's short half-life and this concerns me. I make sure it is taken in the morning, so there is protection during school. But, I know all it takes is a late trip to the grocery store, touching a cart...

 

Thanks everyone!

[P_Mom]

MMC,

 

How strange about Dr. Latimer giving 250 mg Pen VK once a day. We saw her a bit ago and she put my boys on it 2 x a day. Was this recently????

 

Also, to all......

 

I took my boys off antibiotics completely the past week before school because we weren't really doing much. There was no change and they continued to do well. I do absolutely want them on proph. antibiotics because I KNOW if they get strep, it will come roaring back. In their case, what do you all think about the old Swedo proph. dose of Zith? Like,

twice once a day every 5 days or so? Anyone doing that? I don't know if I could even get it. They are currently back on 250 mg Aug. once a day because school started. This Aug. dose has worked for the last three years (well, minus a year when they were on PenVK...that also worked)......perhaps I should just stick with what is working?. But....it would be sooo nice to only have to give them pills once a week or so....I hate giving my boys pills.

Plus, which is easier on the body/gut???

 

THANKS!