Dose of Azithro

[cara615]

First I want to aplogize for my prolific posting lately. Y'all must be so sick of me!

 

Ok here is my situation. My son is 6 and weights 36lbs (he is little). He has been on Azithro 75mgs since Dec 2013. We saw great resolution of his tics from the episode he had in the middle of Nov when he tested pos for strep. We even saw titres come down.

 

However, in Jan and now in Feb he has been flaring. Nothing too intense. He is still funtioning in school, just a little more talkative, a little more energetic and more tics.

 

I seem to think his dose of Azithro is not high enough. So yesterday I doubled up just to see and his tics increased a little right after I gave him his 2nd dose. This tells me there was some die off (right?)

 

So, should I double up one more day and then back off or should I just wait till I get in to see our new PANDAS specialist. The one I was currently seeing just does not know enough about PANDAS unfortunately and just wants me to pay her $220 a session for her to do nothing.

 

My question is, is 150mgs too high for a 36lb boy? I don't want to put him in any danger at all and I am scared to be playing doctor like this. But I have spoken to a couple of people now that have their kids on 250mgs of azithro and they are only 10-15lbs more than my son.

 

Thoughts on this?

[cara615]

Ok I am sure no one wants to give advice on dosing. i don't blame you either. After some research I was able to notice that there is a rule of thumb among PANDAS docs with azithro and its 10mgs per kg. My son is 16kg so that would mean he could tolerate a dose of 160mg. So i gave him 150mg (double what he has been receiving) for 2 days. It seems like his tics are decreasing. He is still a little hyper but we are seeing a reduction in tics. Maybe I am on to something.

 

I will continue for one more day and then drop back to the 75mgs.

 

I have an appointment with our new Dr. in 3 weeks. His name is Dr. Bradstreet and he is in Buford GA. His specialty is hard to treat disorders (i.e. PANDAS and Autism). He field is immunology.

 

I hope by increasing the probiotics, and this jolt of higher abx we can see some resolution of this current flare.

[Rachel]

Have you tried any natural supplements to help with the tics? There is a list and suggestions on a post under tics and touretts forum. Just need to be careful and only add one at a time. Sometimes the supplements can make tics worse.

 

Hope your appointment goes well with the immunologist. My son just started seeing one this last year and this doctor has already uncovered part of my son's problem.

 

Flares are no fun and getting through them can be rough. Hope today is easier for you and your son.

[cara615]

I have done almost everything under the sun for natural supps for tics. Currently we are adding glutamine for the gut lining, NAC for detox, Grapefruit seed extract for maintenance of yeast, Methyl B complex 2x a week, essential oils for inflammation and turmeric for gut strength.

 

in addition we are GFCF , corn free and low sugar.

 

We have tried, mag, taurine, 5HTP, tic tamer, zinc, you name it and it only made things worse for him. My son is very sensitive.

[cara615]

Update: day three on 150mgs of azithro and tics are resolving. He needed a higher dose.

[colleenrn]

The treatment dose first strep with children is 12mg/ kg per day, so 150 does not sound too high to me.

[cara615]

That is what I was thinking too. Now, to get our Pedi to refill at the higher dose before we get in to see our new PANDAS dr. on the 19th.......

[Rachel]

Glad to hear the higher dosage is working.

[cara615]

So just an FYI for those newly diagnosed that may be getting an rx from their pediatrician or another doctor that has limited experience with PANDAS. The normal dosage of abx is not usually going to be effective (at least in our case this was true - so I am mentioning something anecdoatal here).

 

From what I have researched, Dr. T recommends 10-12mgs/kg of azithromyacin to start with. My ds has been on 5mg/kg and although we saw results, over time the results plateaued and we experienced some flares that were difficult to resolve on this dosage.

 

Once I increased to 10mgs/kg, we are seeing resolution. i have also inreased probiotics to counteract the increase in abx as well.

 

Just thought I would mention this here as a reference point. I know that some have had success with changing up the abx but maybe a higher dosage was all that was needed.

 

Again, this is just my experience, I am in no way advocating high doses of abx to every child with PANDAS - I realize that every situation is completely unique.