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Days 12 and 13 on azithromycin


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Sounds like a small thing, but I was taking DS to the school dance today and while we were waiting for the "right" time for dropping him off, I told him, "Now one thing I want you to remember about parties is..." meaning of course, my personal mantra--no one here is thinking about you, they are all thinking about themselves and how they look, just like you are. But instead, he interrupted, perfectly deadpan, with "is not to eat until I actually explode." We had a giggle about it. But later, when I told this to my husband, I teared up about it. It has been so long since my funny smart little (not so much anymore) guy was in residence. We had a good time playing monopoly last night too. He lost and still made it fun and funny.

 

Of course the question is, what am I seeing here? History is:

-initial 17 day tapered steroids

-30 days of Augmentin (850 mg x2)

-Had some kind of cold/cough in the middle

-No positive result--less attention, more rage

-Changed to Azith, 500 mg x1. Up to now, still more rage, less attention. Then the last two days, we've gotten happy boy.

-Also, added back in some probiotics

 

 

So is this delayed response to the steroids (we're about 6 weeks out from start), is it the cold resolution, is it the probiotics, or is it the azith? Whatever, I'll take it!

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i know doc k said 4 weeks...so who knows....

the other thing is.....i wonder is maybe the aug did a little to hammer it...maybe the burst did a little to hammer at it

now the zith is working...

i wonder that with every case...all these treatements prior to the one that may be working....

or it could just be the zith

is it that the cold is going away...(just like allergy season is gone) are all those that had some worsenting doing better...

...i wonder...

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The small moments can feel like huge victories. I hope you have many more and increasingly frequent moments.

 

We saw doctor B for the first time today and he said something that I will always try to remember when I read these posts and responses. He actually thinks PANDAS has a lot to do with genes. Every one of us has a different genetic makeup and will therefore respond differently to treatments- otherwise, treatment would be like writing a computer program. Try to look at improvement over time. Are you keeping some sort of chart/graph of symptoms?

 

Kara

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Ahhh, the little things. I know where you're coming from! Actually being able to pick him up from school, have him #1, get in the car and not say something horrible to me, #2, not have a complete melt before getting home (1 mile drive), and #3, actually say "hi mom."

 

Glad for you...

 

 

 

Sounds like a small thing, but I was taking DS to the school dance today and while we were waiting for the "right" time for dropping him off, I told him, "Now one thing I want you to remember about parties is..." meaning of course, my personal mantra--no one here is thinking about you, they are all thinking about themselves and how they look, just like you are. But instead, he interrupted, perfectly deadpan, with "is not to eat until I actually explode." We had a giggle about it. But later, when I told this to my husband, I teared up about it. It has been so long since my funny smart little (not so much anymore) guy was in residence. We had a good time playing monopoly last night too. He lost and still made it fun and funny.

 

Of course the question is, what am I seeing here? History is:

-initial 17 day tapered steroids

-30 days of Augmentin (850 mg x2)

-Had some kind of cold/cough in the middle

-No positive result--less attention, more rage

-Changed to Azith, 500 mg x1. Up to now, still more rage, less attention. Then the last two days, we've gotten happy boy.

-Also, added back in some probiotics

 

 

So is this delayed response to the steroids (we're about 6 weeks out from start), is it the cold resolution, is it the probiotics, or is it the azith? Whatever, I'll take it!

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So nice that your son found his smile and can share those moments again. I think with the health worries and more severe symptoms we frequently don't notice when these things are gone- But we notice when they come back.

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Thanks everyone. Of course, he then had a horrible time at the party and came home loaded for bear and got into a fight with DH, who was also not in the best of moods... and this morning I had to repeat something three times because I didn't say it right. We take the good times and wait through the not so great ones. Yes, I am keeping a chart, and thank you because I need to note both the great afternoon and the discouraging evening!

 

I agree that the cause of this problem is a weird and totally individual combination of genes, environment, and plain old bad luck. That's likely why things that work great for most TS and even PANDAS kids just don't work at all for DS, and also vice versa.

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We started to see improvement after about 1 1/2 - 2 weeks on azith - but that's where we started, we didn't have any steroid burst or other abx. But your timeline on azith matches ours. Our improvement started small - like yours - flashes of normalcy. My son is still very young, and I remember crying like a fool when I was leaving day care after 2 weeks on the azith because for the first time in months my son handed me his banana and said "Mommy - you open it". The day care director also started laughing and crying like a fool when she heard this. As stupid and normal as it sounds, we had gone through about 5 monhts of increasing anxiety about our breakfast rituals and not even Mommy, or anyone else for that matter, was allowed to even touch any of his food. Most likely contamination fears - but he's only 2, so he couldn't really communicate that with us - but if someone else touched his food, or even got too close, he would pitch a fit and refuse to eat ANYTHING else that was in front of him.

 

For us, the "shining moments" were the first sign of improvement, but we still had issues. The first symptom to subside was the rage though, he slowly became less and less angry. After about a month on the abx, we were down to only 2-3 rages a week - and they were MUCH shorter and far less violent. After 4 1/2 months, we only see rages when he's been exposed to strep (which seems to be going around like crazy right now) and we're about 90% back to normal on the OCD and ADHD. So we're completely functional as a family again, with just some minor hiccups along the way (which anyone with a 2 year old would expect).

 

I know I've read lots of other parents on here that have had to try various abx before they found the one that was "right" for their child - hopefully you've stumbled on what works for you now!!

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Sounds like a small thing, but I was taking DS to the school dance today and while we were waiting for the "right" time for dropping him off, I told him, "Now one thing I want you to remember about parties is..." meaning of course, my personal mantra--no one here is thinking about you, they are all thinking about themselves and how they look, just like you are. But instead, he interrupted, perfectly deadpan, with "is not to eat until I actually explode." We had a giggle about it. But later, when I told this to my husband, I teared up about it. It has been so long since my funny smart little (not so much anymore) guy was in residence. We had a good time playing monopoly last night too. He lost and still made it fun and funny.

 

Of course the question is, what am I seeing here? History is:

-initial 17 day tapered steroids

-30 days of Augmentin (850 mg x2)

-Had some kind of cold/cough in the middle

-No positive result--less attention, more rage

-Changed to Azith, 500 mg x1. Up to now, still more rage, less attention. Then the last two days, we've gotten happy boy.

-Also, added back in some probiotics

 

 

So is this delayed response to the steroids (we're about 6 weeks out from start), is it the cold resolution, is it the probiotics, or is it the azith? Whatever, I'll take it!

 

That's the part I'm enjoying the most with DS lately. He has really been cracking me up lately!

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