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My ds16 is on day 7 of azith 500mg. While we're seeing some improvement in him overall, transitions (particularly leaving home) and school are still very difficult. School is downright impossible. He pushes himself to go everyday and then is so angry with himself and life that he cannot get through even first period.

 

I'm seeing some improvement but not the silver bullet we had hoped for. Is this normal progress after 7 days? Is it at this time that we should be giving Augmentin a trial or is it too soon?

 

I left a message with Dr. T's office to get a consult. Our kit for the Cunningham tests should be here on Friday. Our DAN! has pretty much thrown his hands in the air and won't rx anything else. I had to call a doc friend to get the 1 month of azith 500mg that I have.

 

Other than the gut support (probiotics, kefir), brain support (CLO & D3) and stress support (Vit C, Methyl B12), is there anything else I should be doing? Could it be important to remember that as a toddler with CHRONIC ear infections we often had to rely on Augmentin to finally clear it? Might that suggest Augmentin as a good abx choice for him now?

 

Sorry, I know that's a lot of questions. Like everyone, its so hard to watch your child suffer when I fully believe there is relief available for him, it's a matter of finding it. Buster's flow chart is great, we're at step 9 and wondering if our current dose or abx choice is the right one.

 

Thanks for any advice.

Gat's mom.

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Gat's Mom-

 

Try to be patient. It took 30 days on full strenght zith to see something we could call major, sustained improvement for my dd. Much of the recovery is sawtoothed. Some things improve, some may worsen, but the overall weekly trend will hopefully be positive. Unfortunately, still now, I have found I have to look at the week as a whole- not individual days. While dd is still doing really well overall- she will have a pandas-y day here and there.

 

Buster and EA mom have developed a system where they chart their dd's behavoir. It is broken down to maybe 10 pandas behavoirs, and each one is given a ranking from 0-10 in severity. I never did this- but think it would be so helpful to see the trend.

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Gat's Mom-

 

Try to be patient. It took 30 days on full strenght zith to see something we could call major, sustained improvement for my dd. Much of the recovery is sawtoothed. Some things improve, some may worsen, but the overall weekly trend will hopefully be positive. Unfortunately, still now, I have found I have to look at the week as a whole- not individual days. While dd is still doing really well overall- she will have a pandas-y day here and there.

 

Buster and EA mom have developed a system where they chart their dd's behavoir. It is broken down to maybe 10 pandas behavoirs, and each one is given a ranking from 0-10 in severity. I never did this- but think it would be so helpful to see the trend.

 

Thanks so much! That helps a lot. I'm taking notes throughout the day with happy faces and sad and there are more happy than sad since day 2 of abx so we'll keep pushing forward. I appreciate your input.

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Hi Gat'smom,

yes, give the Azith. a whole month.

 

How much does your son weigh?

 

Have you tried Advil (Ibuprofen--don't get the recalled stuff though! :unsure: )? I would give that as well. Short term, you can give it 3-4 x daily. Give it with food (to prevent stomach upset).

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When I had that nasty sinus infection late last year that caused a first-in-many-years resurrection of specific PANDAS symptoms, my doc cut bait after 2 weeks of azith, since it wasn't "getting at the infection," and switched to Augmentin, which did clear it up. It's so hard to decide whether to be patient vs. "throwing good money after bad" with something that isn't going to kill that strain of whatever it is. If you're seeing improvement, though, seems to me that that's a good sign. I don't recall seeing anything get appreciably better with the zith that I took that time. Of course, it was probably easier to assess in my case since the sinuses indicated very clearly whether anything was getting better.

 

I know I sound like a broken record with the omega-3 fatty acids this morning, but I notice that he doesn't seem to be taking any from your description below. In my view, those are critical - have you given them a try?

 

My ds16 is on day 7 of azith 500mg. While we're seeing some improvement in him overall, transitions (particularly leaving home) and school are still very difficult. School is downright impossible. He pushes himself to go everyday and then is so angry with himself and life that he cannot get through even first period.

 

I'm seeing some improvement but not the silver bullet we had hoped for. Is this normal progress after 7 days? Is it at this time that we should be giving Augmentin a trial or is it too soon?

 

I left a message with Dr. T's office to get a consult. Our kit for the Cunningham tests should be here on Friday. Our DAN! has pretty much thrown his hands in the air and won't rx anything else. I had to call a doc friend to get the 1 month of azith 500mg that I have.

 

Other than the gut support (probiotics, kefir), brain support (CLO & D3) and stress support (Vit C, Methyl B12), is there anything else I should be doing? Could it be important to remember that as a toddler with CHRONIC ear infections we often had to rely on Augmentin to finally clear it? Might that suggest Augmentin as a good abx choice for him now?

 

Sorry, I know that's a lot of questions. Like everyone, its so hard to watch your child suffer when I fully believe there is relief available for him, it's a matter of finding it. Buster's flow chart is great, we're at step 9 and wondering if our current dose or abx choice is the right one.

 

Thanks for any advice.

Gat's mom.

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Gat'smom,

could I ask why the DAN doc has 'thrown his hands up and won't prescribe"? just curious.

 

we were at our DAN docs office yesterday, more for a consult on some blood tests my son had recently, and I also wanted to pick his brain on PANDAS. This doc has PANDAS patients, altho he is of the school that titers should be high to show the strep connection. I asked about antibiotics and he said they are just for 'prevention' of strep. I asked 'what if the strep is somewhere in the body and "intracellular" and asked how you get at that, and he said "you can't".......

 

I'm not agreeing or disagreeing, just relaying what he said.

 

 

Faith

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Gat'smom,

could I ask why the DAN doc has 'thrown his hands up and won't prescribe"? just curious.

 

we were at our DAN docs office yesterday, more for a consult on some blood tests my son had recently, and I also wanted to pick his brain on PANDAS. This doc has PANDAS patients, altho he is of the school that titers should be high to show the strep connection. I asked about antibiotics and he said they are just for 'prevention' of strep. I asked 'what if the strep is somewhere in the body and "intracellular" and asked how you get at that, and he said "you can't".......

 

I'm not agreeing or disagreeing, just relaying what he said.

 

 

Faith

 

Hmmm. It sounds like Dr. T. needs to speak at some DAN! conference to set these guys straight.

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Gat'smom,

could I ask why the DAN doc has 'thrown his hands up and won't prescribe"? just curious.

 

we were at our DAN docs office yesterday, more for a consult on some blood tests my son had recently, and I also wanted to pick his brain on PANDAS. This doc has PANDAS patients, altho he is of the school that titers should be high to show the strep connection. I asked about antibiotics and he said they are just for 'prevention' of strep. I asked 'what if the strep is somewhere in the body and "intracellular" and asked how you get at that, and he said "you can't".......

 

I'm not agreeing or disagreeing, just relaying what he said.

 

 

Faith

 

Hmmm. It sounds like Dr. T. needs to speak at some DAN! conference to set these guys straight.

 

Faith, we must have the same DAN! In my experience they don't seem to be big on aggressive abx therapy unless there"s Lyme involved. The best I could get out of him was 250 of zith for 3 days, followed by twice per week for a month. It's all we've ever tried for Gatlin and it's the equivalent of a handful of M&M's. I agree that abx are often overprescribed in benign cases but that's no more of an offense than withholding them when there is so much evidence of their benefit in this population. This is our first true trial of abx at the correct dosage in 3 major episodes of PANDAS. I've learned much from our DAN! and respect him but I think his preconceived mindsets about abx are as potentially limited as a regular peds mindsets about vaccines. Thank heaven for Dr. T, K & L and the others.

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on another note, he did say he treats with IVIG and PEX for some PANDAS patients (altho I get the impression his patients are mostly autistic, but not sure there), and he does think that it helps, altho it would be hard to get insurance to cover that. I mentioned that some were having success based on immune deficiences, and maybe it sparked something in him. not saying he is recommending that for us, but at least it gave him something to think about. Being that he is an immunologist/allergist as well, he did order an immuno work up for my son to see where he stands on immune deficiencies, as well as some other things like the lyme/epstein barr/mycoplasma, etc. that I wanted to get. My son initially showed a high level of manganese in his blood, so this is why I was consulting him in the first place.......

 

(how am I doin SFmom???)..... :unsure:

 

Faith

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When I had that nasty sinus infection late last year that caused a first-in-many-years resurrection of specific PANDAS symptoms, my doc cut bait after 2 weeks of azith, since it wasn't "getting at the infection," and switched to Augmentin, which did clear it up. It's so hard to decide whether to be patient vs. "throwing good money after bad" with something that isn't going to kill that strain of whatever it is. If you're seeing improvement, though, seems to me that that's a good sign. I don't recall seeing anything get appreciably better with the zith that I took that time. Of course, it was probably easier to assess in my case since the sinuses indicated very clearly whether anything was getting better.

 

I know I sound like a broken record with the omega-3 fatty acids this morning, but I notice that he doesn't seem to be taking any from your description below. In my view, those are critical - have you given them a try?

 

My ds16 is on day 7 of azith 500mg. While we're seeing some improvement in him overall, transitions (particularly leaving home) and school are still very difficult. School is downright impossible. He pushes himself to go everyday and then is so angry with himself and life that he cannot get through even first period.

 

I'm seeing some improvement but not the silver bullet we had hoped for. Is this normal progress after 7 days? Is it at this time that we should be giving Augmentin a trial or is it too soon?

 

I left a message with Dr. T's office to get a consult. Our kit for the Cunningham tests should be here on Friday. Our DAN! has pretty much thrown his hands in the air and won't rx anything else. I had to call a doc friend to get the 1 month of azith 500mg that I have.

 

Other than the gut support (probiotics, kefir), brain support (CLO & D3) and stress support (Vit C, Methyl B12), is there anything else I should be doing? Could it be important to remember that as a toddler with CHRONIC ear infections we often had to rely on Augmentin to finally clear it? Might that suggest Augmentin as a good abx choice for him now?

 

Sorry, I know that's a lot of questions. Like everyone, its so hard to watch your child suffer when I fully believe there is relief available for him, it's a matter of finding it. Buster's flow chart is great, we're at step 9 and wondering if our current dose or abx choice is the right one.

 

Thanks for any advice.

Gat's mom.

 

The augmentin question has been sticking in the back of my head for a couple days. I will give the zith a good two week trial. It would make sense that he might require some time as he was several hard weeks into this backslide with me doing little else other than trying to treat it as a candida overgrowth. Thanks for you input on the augmentin. That sort of information really helps me to weigh things out intelligently.

 

He takes 2000mg of CLO (cod liver oil) as his omega 3 supp each day. The vitamin D3 that he takes also contributes another 115mg of omega 3. Would you suggest he take more?

 

Thanks so much,

Gat's mom.

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Hi Gat'smom,

yes, give the Azith. a whole month.

 

How much does your son weigh?

 

Have you tried Advil (Ibuprofen--don't get the recalled stuff though! :huh: )? I would give that as well. Short term, you can give it 3-4 x daily. Give it with food (to prevent stomach upset).

 

He weighs 150lbs.

 

Yes, we're doing Advil 400mg 3X per day with food. Long before finding this group and before the research on ibuprofen enhancing rx antifungal activities, I knew it helped my son. Back when he was 12, I'd see a difference in him after a really bad day when he complained of a headache and I gave it to him. His headache went away and overall he seemed calmer. So that's now part of the daily stuff since starting the azith.

 

Thanks so much for the advice, we'll trudge on for now.

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