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Finally having a calm day to catch up. Just wanted to update with what was going on and I def owe some thanks for the suggestions of placing 9 y/o on augmentin after leaving hospital. Been on it for a week now, instead of the penicillin. We were dealing with daily violent rages and for a 6 days now- No rages! There are two changes 1. the switch to high dose augmentin and 2. we have him in a separate house and myself, his dad, and stepdad all take turns taking care of him- so he is always one on one with an adult. I am not sure if the diminishing of rages is due to the augmenting then or the change of situation ( prob less anxiety no siblings around and 100%attention)

What we do still experience is defininte age regression type behaviors, separation anxiety - likes us to be in the same room, and ocd- won't leave the house, won't shower, very fixated on things, tics and some naughty talk ( some swearing and border inappropriate talking - this is not usual for him and is very repetitive.

Curious to hear others opinions on whether the rage diminishing even though still high ocd/tics/etc is from the augmentin or just the separation change.

Am also worried about him just not functioning, there is a level of just being in his own world and thats it, there is absolutely no functioning on a regular 9 y/o level. This is not permanent damage right?

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Curious to hear others opinions on whether the rage diminishing even though still high ocd/tics/etc is from the augmentin or just the separation change.

 

I think its the augmentin. My daughter had awful, awful "demon possession" episodes...most of which had no environmental triggers. When we finally increased her zith-they are gone. She still has OCD, abnormal movements (still don't know if those are tics or what?)...Its been over 2 months since we've seen one of those scary episodes, and I'm talking about a child who has been having those episodes for at least 10 years! The change of environment may help- but I think the abx is the main factor.

 

I'm so glad you've found a way to keep the family safe and still keep your son with you. Keep hanging in there- the other stuff will get better, too.

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Finally having a calm day to catch up. Just wanted to update with what was going on and I def owe some thanks for the suggestions of placing 9 y/o on augmentin after leaving hospital. Been on it for a week now, instead of the penicillin. We were dealing with daily violent rages and for a 6 days now- No rages! There are two changes 1. the switch to high dose augmentin and 2. we have him in a separate house and myself, his dad, and stepdad all take turns taking care of him- so he is always one on one with an adult. I am not sure if the diminishing of rages is due to the augmenting then or the change of situation ( prob less anxiety no siblings around and 100%attention)

What we do still experience is defininte age regression type behaviors, separation anxiety - likes us to be in the same room, and ocd- won't leave the house, won't shower, very fixated on things, tics and some naughty talk ( some swearing and border inappropriate talking - this is not usual for him and is very repetitive.

Curious to hear others opinions on whether the rage diminishing even though still high ocd/tics/etc is from the augmentin or just the separation change.

Am also worried about him just not functioning, there is a level of just being in his own world and thats it, there is absolutely no functioning on a regular 9 y/o level. This is not permanent damage right?

 

From our experience regarding my son's moods and emotions, I think it is the Augmentin. A lack of stressors may be contributing, but when my son is in an exacerbation pretty much anything can send his mood into a tailspin. From the stories I've read, mood seems to improve first, then ocd, then tics. Maybe not for everyone, but that seems to be the trend and that is what I'm noticing with my own son. Like I said in my post, both he and I can handle the ocd and tics better when his moods aren't so crazy.

 

Hang in there. It sounds like you are making it work and things are headed up.

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Rages were one of the first things to calm down for my son. The hitting was the very first, thank God.He shed different PANDAS symptoms at different times. Some went away simultaneously, some took turns. OCD the last. So, if you see some improvement, that's good. Honestly, after things are calm enough, you just may have to test him and spend a few hours at you home with everyone there and see how he copes.

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Full strength Augmentin--right?

 

It took time for our d to come back--the age regression issue is not unusual. Many of us have seen that during exacerbations--

I am so thankful for the blessing of your child being better--may it continue.

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Not sure if its considered full dose but it is 875mg twice a day. He only has a week left ( was just a two week dose) I emailed Dr K and asked if he should continue on the augmentin until ivig or go back to the penicillin ( I really hope we do not go back to the penicillin it did nothing and would hate to see the rages come back) Especially hearing that others also think its the augmentin that has made those rages disappear.

Had the 4 yr old twins here for about an hour, so I could go eat lunch at the school with the 6 y/o's and he was getting testy after about 45 min of the 4 y/o being here, think I showed back up just in time- he is a little high anxiety right now though. Might be too soon yet to do that again.

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Well, it could also be in part the 4 year olds:) I have a 3 1/2 year old. They know no boundaries, don't respect personal space and can push the buttons of older kids. One of my other kids is 9 years old and she can really get to him.

 

I say ask for a refill of the augmentin and explain how you see improvement. I think he'll agree.

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Well, it could also be in part the 4 year olds:) I have a 3 1/2 year old. They know no boundaries, don't respect personal space and can push the buttons of older kids. One of my other kids is 9 years old and she can really get to him.

 

I say ask for a refill of the augmentin and explain how you see improvement. I think he'll agree.

 

Do you think augmentin xr is warranted to ask for until we can do the ivig or sticking with the augmentin 875 is sufficient - we are looking at being able to schedule it within 2-3 weeks, and then depending how far he is booked out prob May??

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Those who have gone to Augmentin XR, I believe, are on it long term and with a high dosing. Some insurances will not cover Augmentin XR, so that's something to think about and research

 

I would think for 2-3 weeks, it's okay to stay on "regular" Augmentin. Have a discussion with Dr K ahead of time about what antibiotics he will be going on afterwards. If he stays on the Augmentin afterwards, try to get the script so he continues to take it 2x a day vs only one dose a day.

 

Something else... maybe start a thread if people think he should actually do a steroid prior to IVIG anyway. I think I read once that some theorized that the IVIG may have better results following a steroid burst. But I can't clearly remember what was said.

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Those who have gone to Augmentin XR, I believe, are on it long term and with a high dosing. Some insurances will not cover Augmentin XR, so that's something to think about and research

 

I would think for 2-3 weeks, it's okay to stay on "regular" Augmentin. Have a discussion with Dr K ahead of time about what antibiotics he will be going on afterwards. If he stays on the Augmentin afterwards, try to get the script so he continues to take it 2x a day vs only one dose a day.

 

Something else... maybe start a thread if people think he should actually do a steroid prior to IVIG anyway. I think I read once that some theorized that the IVIG may have better results following a steroid burst. But I can't clearly remember what was said.

 

I will search the steroid/ ivig and see if anything pops up on that. Interesting!

Dr K had just said that because of the severity of the rages, he thought it would do more harm for him when he came off from the steroid and this would not be best for him at that point. Although, maybe he would change this thought, if we continue on the augmentin this month and are continued with no rages.

vickie- you are always full of such good info ( : thanks

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Well, it could also be in part the 4 year olds:) I have a 3 1/2 year old. They know no boundaries, don't respect personal space and can push the buttons of older kids. One of my other kids is 9 years old and she can really get to him.

 

I say ask for a refill of the augmentin and explain how you see improvement. I think he'll agree.

 

Do you think augmentin xr is warranted to ask for until we can do the ivig or sticking with the augmentin 875 is sufficient - we are looking at being able to schedule it within 2-3 weeks, and then depending how far he is booked out prob May??

 

I asked Dr. T. to switch us to the Biaxin XR simply to help make taking that and the supplements I give him more convenient. You shouldn't give magnesium or probiotics with it and those are two of our staples. I don't see any reason not to ask.

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So biaxin is where in the antibiotic line?? and what are probiotics???

 

 

Biaxin is a macrolide. A cousin of azithromyacin. It will kill things like intracellular strep, lyme and mycoplasma that other abx can't get to.

 

Probiotics are the good bacteria that is necessary for the GI tract to function correctly. Without them people suffer all sorts of issues like digestion problems, diarrhea, yeast overgrowth, leaky gut, etc. Antibiotics kill both the good and the bad bacteria, so when taking an antibiotic it is a good idea to take one to replenish. You can buy them at the grocery store. A good brand is Culturelle. The good ones with a lot of organisms aren't cheap, but it is worth getting a good one. You can't take them at the same time as the antibiotic because it will kill the good bacteria. I try to give them at least 3 hours apart.

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So biaxin is where in the antibiotic line?? and what are probiotics???

 

 

Biaxin is a macrolide. A cousin of azithromyacin. It will kill things like intracellular strep, lyme and mycoplasma that other abx can't get to.

 

Probiotics are the good bacteria that is necessary for the GI tract to function correctly. Without them people suffer all sorts of issues like digestion problems, diarrhea, yeast overgrowth, leaky gut, etc. Antibiotics kill both the good and the bad bacteria, so when taking an antibiotic it is a good idea to take one to replenish. You can buy them at the grocery store. A good brand is Culturelle. The good ones with a lot of organisms aren't cheap, but it is worth getting a good one. You can't take them at the same time as the antibiotic because it will kill the good bacteria. I try to give them at least 3 hours apart.

 

Wow- hate to admit this, but as far as supplements, I didn't pay as much attention as I think I should be, Just thought I had such a large family there is no way we could switch to gluten free , etc- sort of stuff- for everyone in the house, and buying two sets of groceries when our grocery bill is already outrageous lol was not even an option. But wow- I need to open my eyes- thank you for explaining that, it put some importance on something I have never done or thought was that important ) : sounds like I was way off the mark there.

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Yes, definitely give a probiotic,esp with long term antibiotics. Make sure you space them out between the antibiotic. meaning, give antibiotic at breakfast and dinner. Probiotic at lunch. Another probiotic mentioned on here a lot (if your child can take pills) is Pearl probiotics. Or you can try just giving Kefir (a drink kind of like a yogurt drink).

 

Biaxin has been popular on here for Mycoplasma, but for strep related PANDAS, it seems like Augmentin and Zithromax are the most "popular". I don't know if I heard of any of these kids who have gotten a script for Biaxin "just" for strep.

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