So far so good.

[fightingmom]

You may remember that a few weeks ago I posted that my son was raging and refusing to go to his Dr. appt that afternoon. We made it there, and he was started on Zithromax in addition to the Augmentin he was already taking. His labs also revealed he was very low in vit D so I started him on D3 that evening along with zinc. Since then, we have had 15 great days. He started to get a little grumpy around days 3/4 on the Zith, but we pushed through and I started doing some minor detox stuff (charcoal, etc).

 

Yesterday morning he was a wee bit short with me and he woke up today with a nasty headache - so did I and my sinuses are KILLING ME. We seem to constantly have sinus infections in sync with one another, I sure hope this isn't the beginning of another. I finished my Augmentin 2 days ago...(nothing seems to work and I AM going to ask that we explore swabbing nose for staph and strep at next appt).

 

With exception of maybe the sinus infection issue coming back and stirring up a wee bit, he seems to be holding strong with the Zithromax, but we were only given 14 days. I had a hard time getting Dr. to refill it. CVS had to fax a request to them 2x because front desk said they didn't get it, then I got a call from the nurse telling me my request to refill the Zith was DENIED - and by this time I had played tag for 2 days with the office staff we were now out of pills! I explained to the nurse about the significant improvement in my son's behavior on the zith (which I had conveyed a few times before to front desk). She was very nice and said the behavior info had not been conveyed to them and she didn't think it would be a problem now that she knew it significantly helped my son. They called in 14 more days (although she said she was going to try to get him to sign off on 30 so I didn't have to keep paying copays, which was her suggestion, I had not even thought of that).

 

I get the feeling for some reason there is resistance to keep my son on the Zith - maybe it was just due to whatever was lost in translation between the front desk and the nurse, but I sure hope we won't have an issue because it seems to REALLY be helping! DS has come home from school the last few days saying that he is more active in class and he thinks his "teachers like him again because he's answering questions in class" -- and he told me that he doesn't even have the urge to SNEAK food anymore!!! And, you know what? He hasn't!! I have had left over pizza in the fridge and he didn't even touch one slice! He's been asking, "hey mom, can I eat the x,y,z" -- this is the same kid that had hoards of food in his room and wrappers under his bed, in drawers, closet, etc. In therapy for 2 years and the last 6+ months with an eating disorder specialist for binge eating! No one has been able to make a dent! And, in 2 weeks on zith he doesn't have the urge anymore? WOW! Just wow!!

 

Amazing right?

Edited April 27, 2012 by fightingmom

[Missmom]

You may remember that a few weeks ago I posted that my son was raging and refusing to go to his Dr. appt that afternoon. We made it there, and he was started on Zithromax in addition to the Augmentin he was already taking. His labs also revealed he was very low in vit D so I started him on D3 that evening along with zinc. Since then, we have had 15 great days. He started to get a little grumpy around days 3/4 on the Zith, but we pushed through and I started doing some minor detox stuff (charcoal, etc).

 

Yesterday morning he was a wee bit short with me and he woke up today with a nasty headache - so did I and my sinuses are KILLING ME. We seem to constantly have sinus infections in sync with one another, I sure hope this isn't the beginning of another. I finished my Augmentin 2 days ago...(nothing seems to work and I AM going to ask that we explore swabbing nose for staph and strep at next appt).

 

With exception of maybe the sinus infection issue coming back and stirring up a wee bit, he seems to be holding strong with the Zithromax, but we were only given 14 days. I had a hard time getting Dr. to refill it. CVS had to fax a request to them 2x because front desk said they didn't get it, then I got a call from the nurse telling me my request to refill the Zith was DENIED - and by this time I had played tag for 2 days with the office staff we were now out of pills! I explained to the nurse about the significant improvement in my son's behavior on the zith (which I had conveyed a few times before to front desk). She was very nice and said the behavior info had not been conveyed to them and she didn't think it would be a problem now that she knew it significantly helped my son. They called in 14 more days (although she said she was going to try to get him to sign off on 30 so I didn't have to keep paying copays, which was her suggestion, I had not even thought of that).

 

I get the feeling for some reason there is resistance to keep my son on the Zith - maybe it was just due to whatever was lost in translation between the front desk and the nurse, but I sure hope we won't have an issue because it seems to REALLY be helping! DS has come home from school the last few days saying that he is more active in class and he thinks his "teachers like him again because he's answering questions in class" -- and he told me that he doesn't even have the urge to SNEAK food anymore!!! And, you know what? He hasn't!! I have had left over pizza in the fridge and he didn't even touch one slice! He's been asking, "hey mom, can I eat the x,y,z" -- this is the same kid that had hoards of food in his room and wrappers under his bed, in drawers, closet, etc. In therapy for 2 years and the last 6+ months with an eating disorder specialist for binge eating! No one has been able to make a dent! And, in 2 weeks on zith he doesn't have the urge anymore? WOW! Just wow!!

 

Amazing right?

[Missmom]

Great news! Maybe after the 30 days runs out they could give you a smaller doseage to try and slowly decrease the the zith for another 30 days. So glad you have found some relief.

[fightingmom]

Thanks, That's a good thought. Though, I'm so hesitant to try to drop it so quickly, he's been very sick for a very long time, I think it's going to take a lot more to get him well. This is the first relief we have had, and we have done psych meds, hospitals, etc. -- nothing else has worked till now.

[Missmom]

Thanks, That's a good thought. Though, I'm so hesitant to try to drop it so quickly, he's been very sick for a very long time, I think it's going to take a lot more to get him well. This is the first relief we have had, and we have done psych meds, hospitals, etc. -- nothing else has worked till now.

 

On second thought keep it up as long as you can. Again it is so good to hear good news.

[fightingmom]

Well, crap. I knew I should have kept my mouth shut....and I knew him waking with that headache was indicative.

 

He's being really rude and grumpy and has some sort of rash coming out on his face, near his eye. He thinks he has poison ivy from being in the woods with friends a day or two ago, but I'm not so sure. I swear it seems that his behavior flairs every 2 weeks since on abx. The zith has definitely been the only thing to bring him to such a GREAT point, but there is a cycle forming here. It's about 2-3 weeks and the last 6 weeks it is almost at 2 weeks to the day.

 

What the heck could that be?

[fightingmom]

Well, had a phone consult today and was told my husband had VERY high mycoplasma titers with active infection! He will be starting zithromax for 30 days...

The PA suggested that this could very well be why my son responded so well to the zithromax. My husband is a carrier. What a jerk!

In hindsight, we probably gave it to him. He just has a much better immune system!

Edited April 28, 2012 by fightingmom

[Kimflow]

Fighting Mom,

 

I have not been on this path as long as you but one thing I do know in my 5 short weeks is the one thing that has really helped us has been the zithromax 250 mg daily. It is a sure fire immunomudulator for my son. The doctor said not to think of tapering until all of the PANDAS symptoms are gone for 4 weeks. I have a feeling we'll be on it a good while.

 

Also, interesting that you seem to be seeing a 2 week pattern and I have seen a 7 day pattern. The new antibotic does miracles for 7 days and then seems to act as if it is not working anymore...even while we are still on teh course.

 

We are now on Augmentin and no miracles this time. Augmentin is stronger than both of the previous antibiotics so if this isn't keeping strep down, nothing will. Therefore, there must be another reason to the 7 day cycle.

 

Staying on the Augmentin and seeing what happens. Praying too.

Kim

[fightingmom]

Fighting Mom,

 

I have not been on this path as long as you but one thing I do know in my 5 short weeks is the one thing that has really helped us has been the zithromax 250 mg daily. It is a sure fire immunomudulator for my son. The doctor said not to think of tapering until all of the PANDAS symptoms are gone for 4 weeks. I have a feeling we'll be on it a good while.

 

Also, interesting that you seem to be seeing a 2 week pattern and I have seen a 7 day pattern. The new antibotic does miracles for 7 days and then seems to act as if it is not working anymore...even while we are still on teh course.

 

We are now on Augmentin and no miracles this time. Augmentin is stronger than both of the previous antibiotics so if this isn't keeping strep down, nothing will. Therefore, there must be another reason to the 7 day cycle.

 

Staying on the Augmentin and seeing what happens. Praying too.

Kim

 

 

Wow. Interesting indeed about the patterns and that we are both noticing improvement on the Zithromax. Let's keep tracking progress together. The cycling thing is very intriguing.

 

I'm also not feeling like the augmentin is having any impact at this point.

Edited April 28, 2012 by fightingmom