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Is it possible to see a difference w 2 days of antibiotics


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My son has only been on antibiotics for two days. Granted, compared to other cases I have been reading, his PANDAS is pretty mild. But since I picked him up today, he has been SUPER pleasant, helpful, even downright chipper! We've had other "good days" in the past, but good day only meant no major meltdown. This is beyond good day IMO!

 

Is it possible to see a difference this quickly??

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We saw a fairly rapid response with antibiotics and also with Steroids (within 4 hours his coughing TIC decreased in frequency)....... seemed 90% after a month. BUT, once we did IVIG the baseline was adjusted UP and we finally realized how sick he had been and probably for so much longer.

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yes, i believe it's possible to see a quick reaction. my son started presenting symptoms in oct/nov 2008. we started investigating pandas and strep in jan/feb 2009. we had a horrible ped who threw him on a 5-day course of azith just to CYA b/c he'd been in there many times the months before and then had high titers and a positive culture. this was terrible - all pandas behaviors came back with a vengenance.

 

we switched peds, new one put him on 30-day keflex and sinus CT showed all sinus cavities infected. within 3 days, he was back to his pre-pandas self. i kept asking my husband and mom, 'do you think he's even better than before?'

 

he did relapse a few weeks off abx - maybe due to just being off or had a virus - ? - so hard to tell.

 

how long are you on the abx? what's your plan after?

 

good luck.

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The ped gave us three weeks of amoxicillin. She didn't feel qualified to go beyond that at this point and wants us to get into the neuro. The neuros office is being a PITA though. Its the hospital system here that they want the records of the referring doctor before they'll give you an appt. I guess to prioritize. It's good when you need to get in but frustrating when I wanted that appointment made today! I called the peds office today and they said they would call them and insist. I didn't get a call back yet :angry:

 

We also have his allergist on monday and she is wonderful! I really feel that she will help us as well. She's been baffled by him for a long time - his "allergic croup" that didn't respond to anything and she cannot find a THING he's allergic too. She always felt something else was going on. This was before all of these symptoms. So I think she'll be very interested in this.

 

He has had a couple of "close calls" tonight to melt down, but honestly, I think that's just more age appropriate frustration and I'm hyper sensitive to it. He is still SO MUCH better I'm in awe here! He did ask me a few minutes ago though "will I survive tonight Mommy?" :unsure:

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I so hope this it for you!!! :)

 

 

 

quote name='tantrums' date='Dec 11 2009, 08:34 PM' post='48297']

The ped gave us three weeks of amoxicillin. She didn't feel qualified to go beyond that at this point and wants us to get into the neuro. The neuros office is being a PITA though. Its the hospital system here that they want the records of the referring doctor before they'll give you an appt. I guess to prioritize. It's good when you need to get in but frustrating when I wanted that appointment made today! I called the peds office today and they said they would call them and insist. I didn't get a call back yet :angry:

 

We also have his allergist on monday and she is wonderful! I really feel that she will help us as well. She's been baffled by him for a long time - his "allergic croup" that didn't respond to anything and she cannot find a THING he's allergic too. She always felt something else was going on. This was before all of these symptoms. So I think she'll be very interested in this.

 

He has had a couple of "close calls" tonight to melt down, but honestly, I think that's just more age appropriate frustration and I'm hyper sensitive to it. He is still SO MUCH better I'm in awe here! He did ask me a few minutes ago though "will I survive tonight Mommy?" :unsure:

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My son, too, had a very quick, positive response to antibiotics, but we did experience a plateau. I'm not sure if our expectations were set too high, or if we were just too hopeful after months of dealing with a really nasty wave of OCD behaviors, but it was hard to see the progress slow in about the fourth or fifth week of treatment.

 

Has anyone else experienced this?

 

We actually became convinced that, whatever good the Augmentin was going to do, it had done it. So after 2 months, we took him off. It took about 10 days, but we started to see the behaviors ramping up again, so we put him back on. I have no idea how long we need to do this until we can safely stop, without him backsliding again. I know in "Saving Sammy," Sammy was ultimately on antibiotics for 4 years, and I've talked with another mom who's son was on them for a year before trending off.

 

Do any of you have long-term experience with treating PANDAS with antibiotics? How long?

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I would have to walk on eggshells...is that just because he wasn't feeling well and he's a kid and can't say just leave me alone...

 

My son has been on antibiotics for 5.5 years.

 

ad....how did you get your docs to give you long time anti's ...i can't get a doc to bite on pandas

......i would lke to try zith for a month!!! i now know that for years they weren't giving strong enough dose and that's what makes me wonder about when we couldn't get rid of this one case of strep and he had joint pains

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My son has only been on antibiotics for two days. Granted, compared to other cases I have been reading, his PANDAS is pretty mild. But since I picked him up today, he has been SUPER pleasant, helpful, even downright chipper! We've had other "good days" in the past, but good day only meant no major meltdown. This is beyond good day IMO!

 

Is it possible to see a difference this quickly??

 

 

We had the same reaction (early in the illness) for our d during three exacerbations--Literally a turn around within 48 hours.

 

An original Ps researcher confirmed that it was possible -- as our d was on Amoxicillan and she confirmed that Amox. had anti-inflammatory effects.

 

This only happened the first 3 exacerbations though-- After that it took a month of full strength antibiotics, and continuing them to see ongoing improvement. It took time to heal.

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My son has only been on antibiotics for two days. Granted, compared to other cases I have been reading, his PANDAS is pretty mild. But since I picked him up today, he has been SUPER pleasant, helpful, even downright chipper! We've had other "good days" in the past, but good day only meant no major meltdown. This is beyond good day IMO!

 

Is it possible to see a difference this quickly??

 

 

We had the same reaction (early in the illness) for our d during three exacerbations--Literally a turn around within 48 hours.

 

An original Ps researcher confirmed that it was possible -- as our d was on Amoxicillan and she confirmed that Amox. had anti-inflammatory effects.

 

This only happened the first 3 exacerbations though-- After that it took a month of full strength antibiotics, and continuing them to see ongoing improvement. It took time to heal.

 

T.Mom,

I don't recall if I've asked this before, but when you had to do the full strengh for more than a month, was this during active strep infection, or just doing antibiotics randomly. I mean, does an 'exacerbation' mean that there was an illness at that time, or you were just going by the symptoms?

 

My boy is not showing active strep infection, so I'm wondering if its time for me to give up on antibiotics, its been about six weeks (first a month of augmentin 1000 and now azith 250).

 

Thanks

Faith

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I would have to walk on eggshells...is that just because he wasn't feeling well and he's a kid and can't say just leave me alone...

 

My son has been on antibiotics for 5.5 years.

 

ad....how did you get your docs to give you long time anti's ...i can't get a doc to bite on pandas

......i would lke to try zith for a month!!! i now know that for years they weren't giving strong enough dose and that's what makes me wonder about when we couldn't get rid of this one case of strep and he had joint pains

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I don't recall if I've asked this before, but when you had to do the full strengh for more than a month, was this during active strep infection, or just doing antibiotics randomly. I mean, does an 'exacerbation' mean that there was an illness at that time, or you were just going by the symptoms?

 

My boy is not showing active strep infection, so I'm wondering if its time for me to give up on antibiotics, its been about six weeks (first a month of augmentin 1000 and now azith 250).

 

Thanks

Faith

 

 

Faith --

 

Our son NEVER had an active strep infection that we could determine; we just finally got his titers tested when all the throat cultures came back negative and found that his titers were way out of whack, indicating a strep infection lurking but asymptomatic.

 

We tried Augmentin 875, twice daily, for the first month. He showed immediate improvement within a couple of days, but then it plateaued. So after that month, we decided to take him off. It took about 10 days, but he started regressing again, with the behaviors coming back. So we put him on again -- 1,000 mg Augmentin XR; he was on that for about 10 days, without any noticable impact other than, despite probiotics, his stomach was really giving him trouble. So, since we weren't seeing any real improvement like the first time, and it seemed to be hurting rather than helping, we took him off again.

 

Four days later, we put him back on because his behaviors became more severe than ever before.

 

I have had an email correspondence with Beth Maloney, Sammy's mom and author of "Saving Sammy" about this very thing; when do you ride it out? when do you know if it's having a positive impact? when do you know if you should decrease or stop? she has said that she would let the behaviors be the guide -- that they will tell us when he's ready for a reduction.

 

But like all of you, I'm concerned it will be difficult to keep him on antibiotics for an extended period, so strong is the opposition to or ignorance of PANDAS. Our pediatrician is riding with us right now under her "do no harm" Hypocratic oath, but if we continue to renew prescriptions, that may not continue to be the case.

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Well I think I may have jumped the gun a bit. Today is not looking as rosey as last night. Still some overall improvement, but whiney as all get out and obsessively coloring and wanting ME to do the figures for him because his aren't right. Dang it!! I shouldn't have let myself get my hopes up so much so quickly. It was still SOOOO nice last night to see him as he used to be and gives me hope overall.

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