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What kind of improvement should I expect after 14 days?


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I think around the 14 to 18 day point after commencement of abx is when we saw our first "saw-tooths" in the healing curve. In fact, not once, but twice, it led us to take him off the abx because we thought perhaps they'd done all the good they were gonna do! (We're slow learners, I guess! :) )

 

Anyway, the third time around on abx, we finally learned to exercise some patience and ride it through that saw-tooth bump; we DID come out better on the other side, and I'm willing to bet you will, too.

 

It's hard to know what's going on inside their heads, and when the first few days look so promising, it's hard to just sit there and take a setback without questioning yourself, the abx, the kid's commitment to recovering, etc. But, truly, hang in there and keep your eyes, ears and heart open. I am willing to bet that in another day or two, things will start looking sunnier again in terms of her attitude, resilience, mastery of more pieces of the OCD, etc.

 

It is a lllloooonnnnggg road!

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I am too new at this to be adding ideas, but I do know that many, many have commented on needing to "up" the strength of the antibiotic. So I may have missed what your dd is on. I read that a couple of people that raised the strength from Augmentin XR 500 to 1000 or 1000 to 2000. Sure would be great to have an "instruction manual". Blessings

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Have you considered trying a steroid burst? Dr K 's protocol was the one we used the first go around (with additional days to taper) but it did have a significant effect for the good with our d. Continuing antibiotics during the steroids and for a lengthy period of time has brought her back full circle--it takes time. Best to you this evening--

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Both of my boys responded immediately to abx (the one with the worst ODD, and who was putting his fist through walls, and even suicidal) responded overnight. But, keep in mind that every child is different, and in the end, we did steroid bursts, and then ended up having to do PEX (on both). But, they both were sick for years. I definitely agree with going the steroid burst next. Good luck.

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It took my dd 30 days on full strength (for her size) zithromax for my dd to respond. At that point her symptoms totally remitted. She had only been sick with pandas for 4 weeks.

 

I don't want to scare you, but I would research the steroid bursts. For some, the antibiotics do the trick. For others (like my girls) it is necessary to move on to steroids. I find in the dealing with pandas in two daughters for over a year, preparation is key. Always look to the next step. If this doesn't work, what will we do? If they have another episode, what is our game plan? If they continue with low level symptoms for a long period of time, how aggressive do we want to be? Explore these options on the forum and with your doctor. Hopefully, you will never have to take that next step. But, as you know, when pandas hits it is all consuming and devastating, so it helps to have a plan.

 

So, my advice, give the antibiotics a month to work. While you are waiting, research your next move.

 

The waiting is SO hard. I am there right now, with one of my girls :)

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I can only relay my own experience with my son. It was a long, slow recovery. I saw reaching a plateau and the spiral down stopping as improvement. I usually began to see glimmers of something good happening around day 3 of antibiotics, but it was not huge and no where near 100%, not even 50%. I can't even out a number on it. I hate putting numbers on things. I would say it took about 2 months for exacerbation #1 and 2 for my son to get better and 5 months with directly attacking residual OCD to get him back the 3rd time. For me....as long as I saw an overall steady improvement (even if it was small things here and there) I knew he was getting better. Yes, we had bumps and setbacks. I had a 3 day rule when that happened, unless it was such a slap back that I just got that feeling he was sick again. You may think you don't know what that is, but if you've experienced that after seeing some recovery, you know.

 

Make sure you keep track of progress whether through Buster's charting system or by keeping a journal. It really does help.

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dc great reply.....

 

and thanks for including details(and other do too)that someone may not have thought of..

.what i'm trying to say is.....i first looked up pandas about 5 years ago..when ds was 5 and the many strep/tic correlations and the doctors would roll their eyes at me....but i didn't have to keep coming back because we would always get abx and would get complete remission(even with docs rolliing thier eyes and i had a name for it)so i didn't have to check back often

 

with this onset...and not getting docs to give me abx...i have explored many avenues this time and still asking each avenue direction,,,,do you think its pandas?? Brain balance/tmj doc..do you think pandas...as i always thought that was the crux and past history....

 

what i am trying to lead back to is.......thank you for saying it took 30 days to see something.....i was spoiled into seeing a change immediatley and 50%or better inprovement by end of abx and complete remission by 4 weeks....

.

NOW....maybe it was a different infection...ds has had this a year now...not just a couple of weeks......he is 10 and maybe recovery take longer.....and its taken almost this whole year to reaffirm my direction...understand pandas better.....finding the right doctors.........and constantly reading and rereading posts by everyone here for new ideas, publications, persaonl experiences

So..i saw a break through w/ aug.....but did starting clarth 3 weeks before help break down whatever was going on first.....

we did the 5 day zpack with little fan fair.....so maybe as you posted, the dose wasn't high enough nor long enough as his body and situation may be different now...my expectations are too high......AND PATIENCE..... is my biggest enemy...

 

 

 

It took my dd 30 days on full strength (for her size) zithromax for my dd to respond. At that point her symptoms totally remitted. She had only been sick with pandas for 4 weeks.

 

I don't want to scare you, but I would research the steroid bursts. For some, the antibiotics do the trick. For others (like my girls) it is necessary to move on to steroids. I find in the dealing with pandas in two daughters for over a year, preparation is key. Always look to the next step. If this doesn't work, what will we do? If they have another episode, what is our game plan? If they continue with low level symptoms for a long period of time, how aggressive do we want to be? Explore these options on the forum and with your doctor. Hopefully, you will never have to take that next step. But, as you know, when pandas hits it is all consuming and devastating, so it helps to have a plan.

 

So, my advice, give the antibiotics a month to work. While you are waiting, research your next move.

 

The waiting is SO hard. I am there right now, with one of my girls :)

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dc great reply.....

 

and thanks for including details(and other do too)that someone may not have thought of..

.what i'm trying to say is.....i first looked up pandas about 5 years ago..when ds was 5 and the many strep/tic correlations and the doctors would roll their eyes at me....but i didn't have to keep coming back because we would always get abx and would get complete remission(even with docs rolliing thier eyes and i had a name for it)so i didn't have to check back often

 

with this onset...and not getting docs to give me abx...i have explored many avenues this time and still asking each avenue direction,,,,do you think its pandas?? Brain balance/tmj doc..do you think pandas...as i always thought that was the crux and past history....

 

what i am trying to lead back to is.......thank you for saying it took 30 days to see something.....i was spoiled into seeing a change immediatley and 50%or better inprovement by end of abx and complete remission by 4 weeks....

.

NOW....maybe it was a different infection...ds has had this a year now...not just a couple of weeks......he is 10 and maybe recovery take longer.....and its taken almost this whole year to reaffirm my direction...understand pandas better.....finding the right doctors.........and constantly reading and rereading posts by everyone here for new ideas, publications, persaonl experiences

So..i saw a break through w/ aug.....but did starting clarth 3 weeks before help break down whatever was going on first.....

we did the 5 day zpack with little fan fair.....so maybe as you posted, the dose wasn't high enough nor long enough as his body and situation may be different now...my expectations are too high......AND PATIENCE..... is my biggest enemy...

 

 

 

It took my dd 30 days on full strength (for her size) zithromax for my dd to respond. At that point her symptoms totally remitted. She had only been sick with pandas for 4 weeks.

 

I don't want to scare you, but I would research the steroid bursts. For some, the antibiotics do the trick. For others (like my girls) it is necessary to move on to steroids. I find in the dealing with pandas in two daughters for over a year, preparation is key. Always look to the next step. If this doesn't work, what will we do? If they have another episode, what is our game plan? If they continue with low level symptoms for a long period of time, how aggressive do we want to be? Explore these options on the forum and with your doctor. Hopefully, you will never have to take that next step. But, as you know, when pandas hits it is all consuming and devastating, so it helps to have a plan.

 

So, my advice, give the antibiotics a month to work. While you are waiting, research your next move.

 

The waiting is SO hard. I am there right now, with one of my girls :)

I feel your pain- I was on a pink cloud....my son was on a normal 10 day does of ABX and became his sweet kind self towards the end. He went off and within 3 days- the behaviors came back- that is when I realized he does repeat some sentences when he is in his "defiant" moods- which I know now are exacerbation....I begged the Dr to give us another prescription even though he tested negative for strep and b/c he thought it was PANDAS he gave it to me. So we are now 6 days into the 2nd round of antibiotic( granted there was 3 1/2 days in between doses) and I just had to pick my son up from school this morning- I got him calmed down by being calm, loving him and hugging him- but still had to put him in his room b/c I can't reward behavior like that- talking back, being disrespectful, refusing to do work etc.... - so I am guessing this is sawtooth- but all I know is it SUCKS!!! I am starting to doubt PANDAS b/c I want instant gratification but I know that this is at the root of everything.....I feel your pain- I want the improvements to be stead and improving with NO BACKSLIDING!!!

I WANT MY CHILD BACK!

Brandy

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