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Am I giving enough Augmentin?


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I wanted to poll the group to find out what strength and dosage of Augmentin different PANDAS kids are on.

We started 15 days ago and my son is 12 years old next month. 118 pounds

He is on 1200 per day. 600 mg in a.m. and p.m.

I'm wondering if it is not enough and that is why he is backsliding right now.

 

He was doing fantastic for the first 13 days and then overnight things went haywire again. I am so confused.

Sammy in the Saving Sammy book was 10 years old and from the video quite a bit smaller than my son Ryan and he was on 1500 mg. per day. It is so hard when you can't find a doctor that is very knowledgeable.

 

Thanks,

 

Judy...

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Hi, Judy:

 

Actually, per the book, Sammy gained some weight as a side effect of some of the psych meds and I believe would have weighed close to your son's weight (definitely over 100 lbs). And 1500 mg of augmentin didn't work for him: they had to up his dose to 2000 mg of augmentin XR daily to eliminate the symptoms; anything lower (like 1500 mg) and the behaviors came back.

 

I've traded e-mails with Beth Maloney on this, as well as reading the book, and Beth said that they had to keep Sammy on 2000 mg of augmentin XR daily for a full year, then 1000 mg for another 3 years. As you probably know, Judy (per our PM exchange), we just started this same dose (2000 mg daily) with our son (13, 106 lbs) and it really seems to be making a difference!

 

For these severe, chronic PANDAS kids, it just seems like the "normal" abx dose for the "normal" time period doesn't cut it. Don't know if they're fighting "super-strep" or if they're just vulnerable and it hides out inside them where the abx can't reach it all... but I'm starting to believe that Sammy Maloney needed that full year's mega-dose for a reason.

 

Hope that helps!

 

 

I wanted to poll the group to find out what strength and dosage of Augmentin different PANDAS kids are on.

We started 15 days ago and my son is 12 years old next month. 118 pounds

He is on 1200 per day. 600 mg in a.m. and p.m.

I'm wondering if it is not enough and that is why he is backsliding right now.

 

He was doing fantastic for the first 13 days and then overnight things went haywire again. I am so confused.

Sammy in the Saving Sammy book was 10 years old and from the video quite a bit smaller than my son Ryan and he was on 1500 mg. per day. It is so hard when you can't find a doctor that is very knowledgeable.

 

Thanks,

 

Judy...

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Hi Brian,

 

You answered some of my questions from my other post that I just sent you. Sorry for the overlap...

 

One last question. They don't make Augmentin XR in liquid, I'm sure that the XR has to be in a capsule so it can slow release. I know I am asking so much, but are the pills really big? My son can't swallow pills right now but I want to keep trying because maybe he needs the XR. Ryan just gags on pills, we keep practicing with tic tacs.

 

Does your son take 3 - 4 times a day? I still am really curious about how his stomach feels.

 

Thanks again, and again,

 

Judy...

 

 

Hi, Judy:

 

Actually, per the book, Sammy gained some weight as a side effect of some of the psych meds and I believe would have weighed close to your son's weight (definitely over 100 lbs). And 1500 mg of augmentin didn't work for him: they had to up his dose to 2000 mg of augmentin XR daily to eliminate the symptoms; anything lower (like 1500 mg) and the behaviors came back.

 

I've traded e-mails with Beth Maloney on this, as well as reading the book, and Beth said that they had to keep Sammy on 2000 mg of augmentin XR daily for a full year, then 1000 mg for another 3 years. As you probably know, Judy (per our PM exchange), we just started this same dose (2000 mg daily) with our son (13, 106 lbs) and it really seems to be making a difference!

 

For these severe, chronic PANDAS kids, it just seems like the "normal" abx dose for the "normal" time period doesn't cut it. Don't know if they're fighting "super-strep" or if they're just vulnerable and it hides out inside them where the abx can't reach it all... but I'm starting to believe that Sammy Maloney needed that full year's mega-dose for a reason.

 

Hope that helps!

 

 

I wanted to poll the group to find out what strength and dosage of Augmentin different PANDAS kids are on.

We started 15 days ago and my son is 12 years old next month. 118 pounds

He is on 1200 per day. 600 mg in a.m. and p.m.

I'm wondering if it is not enough and that is why he is backsliding right now.

 

He was doing fantastic for the first 13 days and then overnight things went haywire again. I am so confused.

Sammy in the Saving Sammy book was 10 years old and from the video quite a bit smaller than my son Ryan and he was on 1500 mg. per day. It is so hard when you can't find a doctor that is very knowledgeable.

 

Thanks,

 

Judy...

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Ouch. Yeah, I'm afraid these are big pills (1000 mg twice a day). When our son first got sick 2+ years ago, he couldn't swallow pills very well and we had to get liquid everything. But after 2 years of this - and an endless procession of different vitamins, supplements, and meds we've tried - he's gotten really good at scarfing them down!

 

FYI, Judy: I asked our pharmacist about the "XR" version of augmentin and whether it made much difference vs. regular augmentin (which is what Dr. K had been prescribing previously). He told me it didn't make a difference if you took multiple pills per day - said 1000 mg of every 12 hours would be just as effective as XR. So maybe you'll be able to work it out with liquid doses more often each day?

 

 

Hi Brian,

 

You answered some of my questions from my other post that I just sent you. Sorry for the overlap...

 

One last question. They don't make Augmentin XR in liquid, I'm sure that the XR has to be in a capsule so it can slow release. I know I am asking so much, but are the pills really big? My son can't swallow pills right now but I want to keep trying because maybe he needs the XR. Ryan just gags on pills, we keep practicing with tic tacs.

 

Does your son take 3 - 4 times a day? I still am really curious about how his stomach feels.

 

Thanks again, and again,

 

Judy...

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I just left an urgent message for our ped. to ask him to higher the dose.

 

How is your son's stomach on such a high dose? Do you use probiotics?

 

I am going to keep trying to get him used to pill swallowing.

 

Thanks,

Judy...

 

 

Ouch. Yeah, I'm afraid these are big pills (1000 mg twice a day). When our son first got sick 2+ years ago, he couldn't swallow pills very well and we had to get liquid everything. But after 2 years of this - and an endless procession of different vitamins, supplements, and meds we've tried - he's gotten really good at scarfing them down!

 

FYI, Judy: I asked our pharmacist about the "XR" version of augmentin and whether it made much difference vs. regular augmentin (which is what Dr. K had been prescribing previously). He told me it didn't make a difference if you took multiple pills per day - said 1000 mg of every 12 hours would be just as effective as XR. So maybe you'll be able to work it out with liquid doses more often each day?

 

 

Hi Brian,

 

You answered some of my questions from my other post that I just sent you. Sorry for the overlap...

 

One last question. They don't make Augmentin XR in liquid, I'm sure that the XR has to be in a capsule so it can slow release. I know I am asking so much, but are the pills really big? My son can't swallow pills right now but I want to keep trying because maybe he needs the XR. Ryan just gags on pills, we keep practicing with tic tacs.

 

Does your son take 3 - 4 times a day? I still am really curious about how his stomach feels.

 

Thanks again, and again,

 

Judy...

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You can always crush pills and put in a small amount of liquid. We did this when our 5 1/2 month old baby needed daily aspirin. I think they sell them at pharmacies... we got ours from the hospital.

 

 

I just left an urgent message for our ped. to ask him to higher the dose.

 

How is your son's stomach on such a high dose? Do you use probiotics?

 

I am going to keep trying to get him used to pill swallowing.

 

Thanks,

Judy...

 

 

Ouch. Yeah, I'm afraid these are big pills (1000 mg twice a day). When our son first got sick 2+ years ago, he couldn't swallow pills very well and we had to get liquid everything. But after 2 years of this - and an endless procession of different vitamins, supplements, and meds we've tried - he's gotten really good at scarfing them down!

 

FYI, Judy: I asked our pharmacist about the "XR" version of augmentin and whether it made much difference vs. regular augmentin (which is what Dr. K had been prescribing previously). He told me it didn't make a difference if you took multiple pills per day - said 1000 mg of every 12 hours would be just as effective as XR. So maybe you'll be able to work it out with liquid doses more often each day?

 

 

Hi Brian,

 

You answered some of my questions from my other post that I just sent you. Sorry for the overlap...

 

One last question. They don't make Augmentin XR in liquid, I'm sure that the XR has to be in a capsule so it can slow release. I know I am asking so much, but are the pills really big? My son can't swallow pills right now but I want to keep trying because maybe he needs the XR. Ryan just gags on pills, we keep practicing with tic tacs.

 

Does your son take 3 - 4 times a day? I still am really curious about how his stomach feels.

 

Thanks again, and again,

 

Judy...

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re crushign: Some pills can be very bitter so they would be better to swallow...I'm not sure about augmentin though!

 

Our dd became a pill swallowing pro at 7.5 years when she got PANDAS.

 

There are articles if you google "how to teach your child to swallow pills". We practiced with cheerios (others use small candies) and worked our way up.

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My son too 'backslid' on Augmentin. I switched him so fast back to Keflex! I don't have the time, energy or patience to take even one step backward. We saw Dr. K on Monday in Chicago, he switched him to Zithromax 500 for one week then 250 I'm assuming long term after that because he gave us lots of refills. My son had this two years ago, we did Keflex, then he still had a positive culture, then PenVK, still had a positive culture, finally back to Keflex and within 24 hours of the next round of Keflex this whole PANDAS episode was over like it started.

 

 

I wanted to poll the group to find out what strength and dosage of Augmentin different PANDAS kids are on.

We started 15 days ago and my son is 12 years old next month. 118 pounds

He is on 1200 per day. 600 mg in a.m. and p.m.

I'm wondering if it is not enough and that is why he is backsliding right now.

 

He was doing fantastic for the first 13 days and then overnight things went haywire again. I am so confused.

Sammy in the Saving Sammy book was 10 years old and from the video quite a bit smaller than my son Ryan and he was on 1500 mg. per day. It is so hard when you can't find a doctor that is very knowledgeable.

 

Thanks,

 

Judy...

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Do you think I should do the phone consult with Dr. K? There is no way I can get my son to Chicago. I cannot tell you how great he was doing the first 13 days on Augmentin and then it was like an explosion hit and he went down hill again.

 

He asked me this morning, Mom what happened, why did it get worse again.

 

My ped. has not called me back so I upped his antibiotic the Augmentin to 1000 mg. last night on my own.

 

I don't know what the ###### I am doing (excuse my french) or what to do. I am in a panic. He could not get out of the car to go to school, we drove home both crying. He is afraid to eat because he can't stop picking his food up and down and it is just too hard for him so he is refusing to eat.

 

I tried to get him to eat a waffle so I could give him Augmentin and he shoved the whole thing in his mouth so that he would not have to retrace and keep putting it back down.

 

I feel so alone, even though I know I'm not. I wish I could tranquilize him and get him on a plane to Chicago. I have even thought about renting a motor home. I have lost it, I'm serious.

 

Thanks for listening...

 

 

 

 

 

My son too 'backslid' on Augmentin. I switched him so fast back to Keflex! I don't have the time, energy or patience to take even one step backward. We saw Dr. K on Monday in Chicago, he switched him to Zithromax 500 for one week then 250 I'm assuming long term after that because he gave us lots of refills. My son had this two years ago, we did Keflex, then he still had a positive culture, then PenVK, still had a positive culture, finally back to Keflex and within 24 hours of the next round of Keflex this whole PANDAS episode was over like it started.

 

 

I wanted to poll the group to find out what strength and dosage of Augmentin different PANDAS kids are on.

We started 15 days ago and my son is 12 years old next month. 118 pounds

He is on 1200 per day. 600 mg in a.m. and p.m.

I'm wondering if it is not enough and that is why he is backsliding right now.

 

He was doing fantastic for the first 13 days and then overnight things went haywire again. I am so confused.

Sammy in the Saving Sammy book was 10 years old and from the video quite a bit smaller than my son Ryan and he was on 1500 mg. per day. It is so hard when you can't find a doctor that is very knowledgeable.

 

Thanks,

 

Judy...

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I just want you to know that we can all empathize with you. It is such horribly isolating feeling and you have this huge sense of panic.

 

My son and I have also driven home from school crying together!!!!

 

I forget, but are you in California? Isn't there an immunologist, Dr. Gupta, there who is treating PANDAS?

 

I think, based on Saving Sammy, upping his Augmentin dose is a good idea. Remember, Worried Dad and Sammy went up to 2000 mg. a day. I am just a mom, not a doctor though.

 

Are you giving him motrin as well?

 

 

Elizabeth

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So far, we've been lucky. He hasn't had any obvious stomach issues anyway.

 

We do use a probiotic every day. Have tried different ones, but our new DAN doc recommended Bifo Viden ID, so that's what we're using now.

 

 

I just left an urgent message for our ped. to ask him to higher the dose.

 

How is your son's stomach on such a high dose? Do you use probiotics?

 

I am going to keep trying to get him used to pill swallowing.

 

Thanks,

Judy...

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