Increased Zith Udate

[EAMom]

Hi Susan...what dose is your dd on now (the higher dose)? How much does she weigh?

 

What dose was she on b-4?

 

Our dd (now 54 pounds) has been on 250mg/day since June 08. When we've tried to lower the dose (pre-IVIG which was in aug 09) to 125mg/day we noticed a difference. The Stanford immunologist agrees that the Azith. benefit may be mainly immume-modulation/anti-inflammatory for her at this point, not just anti-biotic/strep prevention. Cutting to 125mg/day should still be enough to prevent strep for her, but the lower dose would have a lower immune-mod/anti-inflammatory effect.

 

We plan to stay on 250mg/day until at least next summer (almost 1 year post IVIG)...then maybe we'll slowly think about decreasing it if all is going well. We'll also recheck our Cunningham values before then as well.

[Suzan]

Hi Susan...what dose is your dd on now (the higher dose)? How much does she weigh?

 

What dose was she on b-4?

 

Our dd (now 54 pounds) has been on 250mg/day since June 08. When we've tried to lower the dose (pre-IVIG which was in aug 09) to 125mg/day we noticed a difference. The Stanford immunologist agrees that the Azith. benefit may be mainly immume-modulation/anti-inflammatory for her at this point, not just anti-biotic/strep prevention. Cutting to 125mg/day should still be enough to prevent strep for her, but the lower dose would have a lower immune-mod/anti-inflammatory effect.

 

We plan to stay on 250mg/day until at least next summer (almost 1 year post IVIG)...then maybe we'll slowly think about decreasing it if all is going well. We'll also recheck our Cunningham values before then as well.

 

Hi there... dd is now on 500 mgs a day. Before this she was on 250 mg daily (although our immunologist had me playing around with 250 every other day and that didn't work so I increased it to 250 daily and then finally 500 daily). She weighs 70 lbs.

 

We saw the immunologist yesterday and have her support to stay on 500 mg for 2 more weeks and then go to alternating days of 500 mg/250 mg. She seemed to feel better about that dose for longer term.

 

Susan

[Suzan]

My dd continues to be on the 500mg dose of zith and the valtrex. She's still doing really well. Her moods creep out now and then, like on Thanksgiving, she was very upset about the run in her tights and was over the top upset and using a baby voice, panic and was overwhelmed. Sometimes I see her grimace pop out suddenly and then she brings it back in and gains control.

 

But she continues to take her pills very well (one of our biggest triggers). Today, my other dd commented on the fact that her sister had not done her netti pot in a few days. I said "she hasn't done a lot of things in 2 days" (pretty snippy comment for a Mom, I guess....OOPS!). In the past, dd would have fallen apart at that comment and started her whole contridiction routine (I'm mad at you, please love me). Today she said "Hey, I've been taking my pills, brushing my teeth and taking a shower!" I had to stop and really give her attention for that. She is doing so great. But I have noticed the past couple of days, it's not as good as it was in the beginning. I know that we still have a long way to go but I am grateful for this period of calm.

 

Susan

[monarchcat]

I wanted to jump in and say that I, too, increased my son's azith over the past few days. He had been doing great and then totally crashed on me so I decided to try the increased dose. He turned around in less than 48 hours and has been doing great again. I only have enough to stay doubled up for another few days so I'm not sure what to do... whether to lower the dose again after 5 days and see how it goes or call the dr. and beg for a new Rx.

 

Also, though, a day after I increased the dose he started getting a cold, which he successfully fought off (sore throat and minor sniffles for a day, then gone) so I wonder if the exacerbation was just a result of his immune system kicking into gear to fight the cold and would have ended by itself.

[Suzan]

I wanted to jump in and say that I, too, increased my son's azith over the past few days. He had been doing great and then totally crashed on me so I decided to try the increased dose. He turned around in less than 48 hours and has been doing great again. I only have enough to stay doubled up for another few days so I'm not sure what to do... whether to lower the dose again after 5 days and see how it goes or call the dr. and beg for a new Rx.

 

Also, though, a day after I increased the dose he started getting a cold, which he successfully fought off (sore throat and minor sniffles for a day, then gone) so I wonder if the exacerbation was just a result of his immune system kicking into gear to fight the cold and would have ended by itself.

 

Our immunologist suggested going to alternating days of the larger and smaller dose. You could try that for a couple of days and see if he holds. We don't have enough abx to keep on going this way either but I am hopeful that once we run out our doc will give us another prescription. I am so glad to hear that you tried it and he is doing well!

 

Susan