Moving on to Azithromicin

[matis_mom]

Hi all,

 

Have not written in a while... DS12 is doing OK, but no 100% out of the woods. Driving to see the neurologist I was asking him to rate his symptoms from 0 to 100, with 0 being totally normal and 100 being out of control. He was rating most things (hand washing, contamination fears, bedwetting, anxiety) at about 15, so I thought, "Hey, that's pretty good!". We get off the car and he brings up "the thoughts", as in trying to figure out whether something he did is right or wrong, he starts tearing up and tells me that's about a 70! Yikes! While talking to the doctor, she could tell it was more than just scrupolosity, there are "bad thoughts," that kids just don't want to talk about, so she did not push him on that. It's so hard because it's all in his head and I can't help him

 

Anyway, we will be going from Augmentin XR (1000mg 2x day) to Zithromax (250mg once a day). I am glad to finally get to try Zythromax.

Is there anything I should be aware off as far as stomach issues, etc, while on Zithromax?

 

We are also going to do another month of steroids, but I will change the abxs first and give that a week, so I can see how he reacts to that change before he starts the steroids.

 

Thanks!

[tpotter]

We've found zithromax to be pretty tame (especially at that dose...my kids currently take the Augmentin XR 100mg 2x day, and that's up from 500 mg. zithromax.) When my DS 17 first took 250 mg zithromax it was such a beautiful thing. His terrible thoughts went away instantly. Just make sure he eats before taking the abx, and it should be fine.

 

Good luck.

[matis_mom]

We've found zithromax to be pretty tame (especially at that dose...my kids currently take the Augmentin XR 100mg 2x day, and that's up from 500 mg. zithromax.) When my DS 17 first took 250 mg zithromax it was such a beautiful thing. His terrible thoughts went away instantly. Just make sure he eats before taking the abx, and it should be fine.

 

Good luck.

So encouraging to hear that it help with the intrusive thoughts! Thanks for the reply

[mom md]

We are on azith 250mg and have had no issues. He does get a probiotic though. Out infectious disease doctor said a lot of cystic fibrosis kids are on it chronically like we are because it is tolerated so well (and it calms the immune system).

[colleenrn]

Three of my kids have been on Zith 250/day for 18 months without any real problems. There have been a handful of times when it cause a stomach ache, but that has been rare.

 

My sister's children do get occasional stomach aches from Zith, but that is mainly when they are on 500mg/day.

 

You can give it with food if it causes problems, but be aware that food can decrease absorption. I try to give it to my kids firast thing in the morning, about 30 minutes before they are going to eat.

 

If they are on it long term, you may want to check liver function at some point, but talk to your physician about the need to do that.

 

Colleen

[rita]

We've found zithromax to be pretty tame (especially at that dose...my kids currently take the Augmentin XR 100mg 2x day, and that's up from 500 mg. zithromax.) When my DS 17 first took 250 mg zithromax it was such a beautiful thing. His terrible thoughts went away instantly. Just make sure he eats before taking the abx, and it should be fine.

 

Good luck.

[rita]

]we've used zithromax at both 250 mg a day, and at times as high as 400-500 mg. probiotic is essential. zithromax has many effects -- anti-microbial, antiinflammatory, pro-motility (crucial for these kids whose g.i. motility is impaired due to basal ganglia damage from pandas),and at times it almost seems "calming" but i dont know the mechanism. generally easier on stomach than augmentin. zithromax is used at 400 mg a day longterm for a gastroparesis group in ohio (can find out which one) and reportedly is well tolerated.

 

 

 

Hi all,

 

Have not written in a while... DS12 is doing OK, but no 100% out of the woods. Driving to see the neurologist I was asking him to rate his symptoms from 0 to 100, with 0 being totally normal and 100 being out of control. He was rating most things (hand washing, contamination fears, bedwetting, anxiety) at about 15, so I thought, "Hey, that's pretty good!". We get off the car and he brings up "the thoughts", as in trying to figure out whether something he did is right or wrong, he starts tearing up and tells me that's about a 70! Yikes! While talking to the doctor, she could tell it was more than just scrupolosity, there are "bad thoughts," that kids just don't want to talk about, so she did not push him on that. It's so hard because it's all in his head and I can't help him

 

Anyway, we will be going from Augmentin XR (1000mg 2x day) to Zithromax (250mg once a day). I am glad to finally get to try Zythromax.

Is there anything I should be aware off as far as stomach issues, etc, while on Zithromax?

 

We are also going to do another month of steroids, but I will change the abxs first and give that a week, so I can see how he reacts to that change before he starts the steroids.

 

Thanks!

[faith]

hi mati's mom,

so are you basically thinking the augmentin xr is really helping enough? but did it help at all in your opinion? i'm getting the impression it seems to have more of an effect on ocd and mood issues, did it help that? or do you feel your boy would be up and down just the same if not on augmentin xr?

 

also, as far as the azith, (we deal with mostly tics, other issues come in kind of a second, so hard to gauge on that for us), but when we tried it out at 250 per day, I felt that my son's vocal tics got somewhat worse, I had a day where he missed two days and I actually thought he did better, and then when he got the next pill, his vocal was off the wall bad that day and next, until I just stopped it completely and things calmed immediately. I've seen a couple parents here report the same about azith. So just watch out for that, it could be a worsening before gets better, but don't really know, I didn't stick it out.

 

Please let us know how things go and if you seem to experience that....good luck.

 

How is the new baby doing, btw?

 

 

regards

Faith

[smartyjones]

pro-motility (crucial for these kids whose g.i. motility is impaired due to basal ganglia damage from pandas),

 

 

rita - can you explain what you mean by that?

 

mati's mom - sorry to hear he's having those thoughts - hopefully, that will help!

Edited March 28, 2010 by smartyjones

[P_Mom]

Yes, Rita...can you please elaborate on the GI motility thing...that is quite interesting!

[matis_mom]

hi mati's mom,

so are you basically thinking the augmentin xr is really helping enough? but did it help at all in your opinion? i'm getting the impression it seems to have more of an effect on ocd and mood issues, did it help that? or do you feel your boy would be up and down just the same if not on augmentin xr?

 

also, as far as the azith, (we deal with mostly tics, other issues come in kind of a second, so hard to gauge on that for us), but when we tried it out at 250 per day, I felt that my son's vocal tics got somewhat worse, I had a day where he missed two days and I actually thought he did better, and then when he got the next pill, his vocal was off the wall bad that day and next, until I just stopped it completely and things calmed immediately. I've seen a couple parents here report the same about azith. So just watch out for that, it could be a worsening before gets better, but don't really know, I didn't stick it out.

 

Please let us know how things go and if you seem to experience that....good luck.

 

How is the new baby doing, btw?

 

 

regards

Faith

Faith,

I would say the Augmentin did help a lot, but not 100%. He had a couple of exposure and symptoms would increase for about a week, and then he seemed to settle back to his "new normal" (which is a 15 in a scale of 0 to 100). His OCD was pretty much gone, and mood was much happier. But then he also had the thoughts, which are new (they were not part of the original list!!!), and those he rated at 70. So, it's hard to tell. Maybe I just have to face the fact that antibiotics alone will never be it for him. Steroids got him back to the "old normal" or zero in our scale, and we'll try that again next week. I just kind of wanted to see how he did on Zithromax alone before he starts the month-long steroid course.

I'll keep a good eye on him... Dr. L noticed NO chorea last week (which she did see the first time) after these 3 or 4 months on Augmentin, so if that comes back at all, I'm calling and switching back! I'm not going to stick it out either!

Baby is doing awesome, sweet as can be, a total angel baby Thanks for asking!

 

Isabel

[KaraM]

Hi Matis Mom,

 

How are you making out on the Zith? Any improvement?

We got positive Cunningham results on Friday and are starting Zithromax today.

 

Kara

 

Hi all,

 

Have not written in a while... DS12 is doing OK, but no 100% out of the woods. Driving to see the neurologist I was asking him to rate his symptoms from 0 to 100, with 0 being totally normal and 100 being out of control. He was rating most things (hand washing, contamination fears, bedwetting, anxiety) at about 15, so I thought, "Hey, that's pretty good!". We get off the car and he brings up "the thoughts", as in trying to figure out whether something he did is right or wrong, he starts tearing up and tells me that's about a 70! Yikes! While talking to the doctor, she could tell it was more than just scrupolosity, there are "bad thoughts," that kids just don't want to talk about, so she did not push him on that. It's so hard because it's all in his head and I can't help him

 

Anyway, we will be going from Augmentin XR (1000mg 2x day) to Zithromax (250mg once a day). I am glad to finally get to try Zythromax.

Is there anything I should be aware off as far as stomach issues, etc, while on Zithromax?

 

We are also going to do another month of steroids, but I will change the abxs first and give that a week, so I can see how he reacts to that change before he starts the steroids.

 

Thanks!

[Fixit]

ok ....i'm a little freaked out..

 

Ds is having an allergic reaction to Aug

 

I thought i'd look up clarith and it side effects list ,,,spasms in the throat and breathing tubes

Ds vocal came back and way up to a screech...about 3 days in...we are still on it...

vocals are down, but is that due to the aug or is his body adjusting

 

i just looked at azith...and a side effect is throat irritation

 

an irritant can send things into a spasm

just like dental work does

i wonder if i stopped the clarith if tha would help

but i 've got to give him something, it looks like they are working...just ride out the storm

 

Ds used to respond wonderfully to azith..!!!!!!!

 

Faith ...on a note about mood you asked ..is that enough to measure.....i would say no....but, when you have less crankies, that is just nice in general....

i am getting more thank you's and other sturff...or maybe he's growing up...i'll take it

[matis_mom]

Hi Matis Mom,

 

How are you making out on the Zith? Any improvement?

We got positive Cunningham results on Friday and are starting Zithromax today.

 

Kara

I think it's too early to tell. Last night he was a bit anxious, but today he seems right back to normal. I don't see any dramatic changes so far, but then again I never saw anything dramatic with any of the other antibiotics (Amox, Cipro, Cefuroxime, Augmentin, Augmentin XR), it's always been like slow, steady progress with some set backs here and there. I figured he's had the strep a while (at least since 2006 as far as I can tell looking back at his records), so it will take time to get it out of his system. I had his titers tested not too long ago, and the are slowly coming down. I will check them again after a month on Zithromax and see how they compare.