How much improvement should I see from antibiotics

[worriedmommy]

I'm trying to determine how much improvement to my dd's tics should be expecting to see from antibiotics?

 

For those of you that don't know, I'm a newbie here. My daughter started with what we now believe to be a tic cough back in Nov 2009 after 5 days with a high fever. (She had previously had 3 confirmed Group A Strep (both peri-anal & throat) cultures since July 2009.) Anyway...after 2 stints on antibiotics (Amox & Augmentin) in Dec & Jan, both of which showed dramatic reduction of the cough the 1st time and complete remission of the cough the 2nd time, she had an explosion of motor, and one vocal throat clearing tic occur on 2/7/10. She literally started ticcing every 3 seconds the entire day...until she fell asleep, when everything completely stops. (I should note that while she did not have strep on 2/7/10, 11 of the 22 kids in her kindergarten had confirmed strep cases in the week leading up to and the week following her sudden onset of these tics.)

 

She's currently on day 13 of 1000 mg /day of Amoxicillin, and is doing better than when she started...but no where near where I hoped she would be. We are trying to find a pattern as to what is aggrivating her tics...and so far it appears to me that if she is talking or moving around, the tics cease. It's when she has to sit still and be quiet that they explode....for example, meal time, watching TV (which we've cut out for the time being), bedtime story time are the worst. Tics are every 1-3 seconds. They all start with her pushing her stomach out and then sucking it in forcefully. This causes her shoulders to shrug, her neck to extend, and sometimes her mouth to frown and eyes bug out. She almost has a look of panic on her face. However, if she's talking the tics seem to stop and do NOT interrupt what she is trying to say.

 

Is this typical to still have bouts of ticcing that go every 1-3 seconds 13 days into antibiotics? Could it be that she needs a different antibiotic?

 

We're still not even sure if this is PANDAS, Tourettes', or something else. I just feel that something, other than genetics alone, is causing this, and I need to find out what. During long bouts of ticcing my dd actually complains that her "tummy hurts" but she just can't stop the stomach jerks.... I want to cry

[MomWithOCDSon]

Sorry, but I'm not sure I remember from previous posts . . . how old is your daughter? Was February the first time you saw the tics, or has your daughter experienced any similar . . . if more subtle . . . behaviors before?

 

For us, we saw some very immediate (48 hours) improvements in OCD behaviors after starting abx, but those dramatic improvements waned and even stepped back on and off again some over the next several weeks. Overall, the "improvements" with abx, at least in our experience, can be pretty subtle and are almost more "atitudinal" and about flexibility and reduced emotional lability than they are about the behaviors themselves. In other words, he still contends with many of the OCD behaviors and thoughts he's had for years, but his ability to "fend them off" or entirely overcome them has improved substantially, as has his distress at their appearance. He's able to just "move on" rather than crumble.

 

From what I've read on this forum, though, the tics behaviors can be harder to overcome; perhaps they take longer to see substantive improvements? My DS has never had significant tics behaviors, so you'll have to look for someone with more experience in this area to chime in here.

 

My main advice would be, don't give up too quickly. Use Buster's chart (on another thread here) or your own journal to keep track of the changes in your daughter's behavior . . . even the subtle ones. Twice we ceased abx because we thought our DS had "plateaued" and was no longer benefitting from the abx, only to be proven wrong by this latest and longest abx regimen (going on 5 mos.), during which we've seen almost miraculous improvement overall, despite some "saw-toothed" patterns and short-term setbacks.

[worriedmommy]

My daughter is 5. The first tic she ever had was in Nov 2009 when the tic cough started. (At the time we didn't know what it was...only that it was a repetitive single dry non-productive throat cough that she would do thousands of times a day, yet it would disappear as soon as she fell asleep.) It wasn't until the motor tics that started all at once on 2/7/10 that we were certain she was having tics. They started so suddenly though. Even the cough...she went from nothing at all to ticcing every few seconds all day long.

 

Not sure if this is relavent, but my dd has always been "ants in the pants". She just never wanted to sit still. Also, never really a cuddly child. Nothing that ever looked like anything I'd call a tic though until what I've explained above.

 

Also, no OCD symptoms or separation anxiety. A couple strange things since the Feb 7th onset though is that she has been having nightmares every few nights, and 3 times over the past 3 weeks has been panic stricken that she cannot swallow while brushing her teeth. I've been there all 3 times, and she literally goes pale, eyes open wide and hands go to her throat. No feeling of this while eating though.

[Fixit]

I'm trying to determine how much improvement to my dd's tics should be expecting to see from antibiotics?

 

For those of you that don't know, I'm a newbie here. My daughter started with what we now believe to be a tic cough back in Nov 2009 after 5 days with a high fever. (She had previously had 3 confirmed Group A Strep (both peri-anal & throat) cultures since July 2009.) Anyway...after 2 stints on antibiotics (Amox & Augmentin) in Dec & Jan, both of which showed dramatic reduction of the cough the 1st time and complete remission of the cough the 2nd time, she had an explosion of motor, and one vocal throat clearing tic occur on 2/7/10. She literally started ticcing every 3 seconds the entire day...until she fell asleep, when everything completely stops. (I should note that while she did not have strep on 2/7/10, 11 of the 22 kids in her kindergarten had confirmed strep cases in the week leading up to and the week following her sudden onset of these tics.)

 

She's currently on day 13 of 1000 mg /day of Amoxicillin, and is doing better than when she started...but no where near where I hoped she would be. We are trying to find a pattern as to what is aggrivating her tics...and so far it appears to me that if she is talking or moving around, the tics cease. It's when she has to sit still and be quiet that they explode....for example, meal time, watching TV (which we've cut out for the time being), bedtime story time are the worst. Tics are every 1-3 seconds. They all start with her pushing her stomach out and then sucking it in forcefully. This causes her shoulders to shrug, her neck to extend, and sometimes her mouth to frown and eyes bug out. She almost has a look of panic on her face. However, if she's talking the tics seem to stop and do NOT interrupt what she is trying to say.

 

Is this typical to still have bouts of ticcing that go every 1-3 seconds 13 days into antibiotics? Could it be that she needs a different antibiotic?

 

We're still not even sure if this is PANDAS, Tourettes', or something else. I just feel that something, other than genetics alone, is causing this, and I need to find out what. During long bouts of ticcing my dd actually complains that her "tummy hurts" but she just can't stop the stomach jerks.... I want to cry

 

Before, when my ds was 5 and he would tic i would go get him tested and sure enough it was strep(and even before that) i would ask the doctors about pandas and strep causing tics...they would say never heard of such a thing/no such thing.....now that i am older and crankier my new moto is

WELL YOU BETTER WRITE IT DOWN OR NO ONE ELSE WILL EITHER..as i'm trying to compile my notes i see the docs dismissed it and didnt' put it down.

Anyway...i may be in a different position now as its been almost 11 months since onset and it looks like MP

What i will tell you is , when my boy would get abx it would take about 2 weeks for a real change (mind you dosage was only for 10-14 days), i would see just a little easing in the begiining and they would continue to decline to zero tics by about 4 weeks....of course i was able to get abx w/in a week or 2 of 1st signs of illness,( not like now it's been so long, even though he did present with illness the day before onset)( i didn't know to look for myco P) I've never had a formal pandas dx

[MomWithOCDSon]

My daughter is 5. The first tic she ever had was in Nov 2009 when the tic cough started. (At the time we didn't know what it was...only that it was a repetitive single dry non-productive throat cough that she would do thousands of times a day, yet it would disappear as soon as she fell asleep.) It wasn't until the motor tics that started all at once on 2/7/10 that we were certain she was having tics. They started so suddenly though. Even the cough...she went from nothing at all to ticcing every few seconds all day long.

 

Not sure if this is relavent, but my dd has always been "ants in the pants". She just never wanted to sit still. Also, never really a cuddly child. Nothing that ever looked like anything I'd call a tic though until what I've explained above.

 

Also, no OCD symptoms or separation anxiety. A couple strange things since the Feb 7th onset though is that she has been having nightmares every few nights, and 3 times over the past 3 weeks has been panic stricken that she cannot swallow while brushing her teeth. I've been there all 3 times, and she literally goes pale, eyes open wide and hands go to her throat. No feeling of this while eating though.

 

It sounds as though you've caught this relatively early, so, if anecdotal history holds any clues, the abx should give you some results, if the abx you're using is the correct medication for you. Or it's possible that you'll need to try another abx . . . perhaps the infectious agent here needs a different combatant due to its particular strain or whatever.

 

As for the "ants in the pants" component, I know a lot of PANDAS kids have similar behaviors, as do some kids with regular OCD and maybe TS, too. With my DS, I attribute it to needing some sort of physical outlet for his anxiety. It has calmed as he's healed, though, and we also have him on Intuniv, which is a non-stimulant ADHD med which has helped him especially with school demands. He's 13, though, so the expectations for him in school are significantly different than for a 5-year-old.

 

Unfortunately, like I said before, I do know that there are some families here who's kids' primary behaviors have been tic-oriented, and, for whatever reason, the efficacy of abx for tic behaviors seems to be a somewhat trickier proposition. Don't know why. Sorry I'm not of more help.

 

Hang in there, and don't surrender. Keep asking questions, poking doctors and trying solutions until you find something that helps!

[Fixit]

I'm sorry and yes more antsie.

[nomoz]

My suggestion is to maybe get a blood work-up done.... I know micoplasm and other illnesses play a major role in this illness, and you may just need a different antibiotic. My daughter (7) has alot of issues, now predominantly rage and repetitive phrases, but she, around 5 years old, began blinking constantly, went to the bathroom about every 15 minutes, did facial grimaces, grunted, etc. Currently, those tics are not present. I think with TS like behavior, one thing behavior just replaces another. And TS is a component of PANDAS. This is a really really complex illness, and doctors are still trying to figure out what works... I don't think Intuniv is a bad idea.. I may try it if my daughter's rages continue.

Good luck!!!

Noelle