Set back? Is this to be expected?

[momaine]

Hi,

Anyone have any experiece with a tic going away for a period of time and then returning? Dd was ten day with no tics from about the tenth day on 2000mg of Augmentin xr to about the 20th day. The last few days have been more difficult than the couple weeks previous. Saturday she started her period so I blamed the difficulties on that....but today, the 5th day of her period I'd be expecting her to be returning to her "norm." But instead, she's really struggling today and she was ticking while trying to dress today. I am wondering if that just happens some days while healing from this or if it is indeed a real set back and I should consider another antibiotic at this point. She'll have been on the 2000mg Augmentin XR for 3 weeks tomorrow.

 

Angela

[Worried_Dad]

Hi, Angela:

 

Our son's been on the 2000 mg augmentin XR for 2+ months now. A couple of weeks ago, he hit a snag - complained of feeling hot and sweaty and his forehead did feel slightly warm to us. (Could have caught a bug from one of his brothers.) He didn't relapse, but his progress stagnated a bit.

 

I spoke with Beth Maloney to ask about Sammy's healing pattern. She reassured me that it was not linear: followed that sawtooth "2 steps forward, 1 step back" pattern. She said there were good days and bad days... but, over time, the good days steadily outnumbered the bad. She also said that, for Sammy, recovery came "in waves."

 

Well, I was a little worried (because about this time last year our son caught a sinus infection and had a relapse post-IVIG round 1). But this week, he's making progress again! Started walking around the house barefoot and let Mom cut his hair - probably seem minor, but these were both firsts since his March exacerbation. His progress appears to be back on track!

 

So you might want to hang in there a little longer with the augmentin. I guess it's a judgment call as to when to switch to something else, but Beth M definitely said Sammy's recovery was uneven.

 

Hope that helps, and best of luck!

 

 

Hi,

Anyone have any experiece with a tic going away for a period of time and then returning? Dd was ten day with no tics from about the tenth day on 2000mg of Augmentin xr to about the 20th day. The last few days have been more difficult than the couple weeks previous. Saturday she started her period so I blamed the difficulties on that....but today, the 5th day of her period I'd be expecting her to be returning to her "norm." But instead, she's really struggling today and she was ticking while trying to dress today. I am wondering if that just happens some days while healing from this or if it is indeed a real set back and I should consider another antibiotic at this point. She'll have been on the 2000mg Augmentin XR for 3 weeks tomorrow.

 

Angela

[CZL]

Hi, Angela:

 

Our son's been on the 2000 mg augmentin XR for 2+ months now. A couple of weeks ago, he hit a snag - complained of feeling hot and sweaty and his forehead did feel slightly warm to us. (Could have caught a bug from one of his brothers.) He didn't relapse, but his progress stagnated a bit.

 

I spoke with Beth Maloney to ask about Sammy's healing pattern. She reassured me that it was not linear: followed that sawtooth "2 steps forward, 1 step back" pattern. She said there were good days and bad days... but, over time, the good days steadily outnumbered the bad. She also said that, for Sammy, recovery came "in waves."

 

Well, I was a little worried (because about this time last year our son caught a sinus infection and had a relapse post-IVIG round 1). But this week, he's making progress again! Started walking around the house barefoot and let Mom cut his hair - probably seem minor, but these were both firsts since his March exacerbation. His progress appears to be back on track!

 

So you might want to hang in there a little longer with the augmentin. I guess it's a judgment call as to when to switch to something else, but Beth M definitely said Sammy's recovery was uneven.

 

Hope that helps, and best of luck!

 

Hi Worried Dad,

First of all, thank you so much for your emails replied to me and that helped me a lot.

So glad to hear that your son continues making improvement after some bumps. Thank you to share what Maloney told about healing pattern.

[momaine]

Hi Worried Dad,

Thanks for responding. We've been dealing with some of the ups and downs which I did expect, but with this particular symptom having been GONE for ten days, it made me really worry to see it resurface. I'll hang in there and see what happens. I hate this freaking disorder! Makes me want to scream. My poor girl is having such a crappy day. grrrrrrrrrrrrrrrrrr.

Angela

 

 

Hi, Angela:

 

Our son's been on the 2000 mg augmentin XR for 2+ months now. A couple of weeks ago, he hit a snag - complained of feeling hot and sweaty and his forehead did feel slightly warm to us. (Could have caught a bug from one of his brothers.) He didn't relapse, but his progress stagnated a bit.

 

I spoke with Beth Maloney to ask about Sammy's healing pattern. She reassured me that it was not linear: followed that sawtooth "2 steps forward, 1 step back" pattern. She said there were good days and bad days... but, over time, the good days steadily outnumbered the bad. She also said that, for Sammy, recovery came "in waves."

 

Well, I was a little worried (because about this time last year our son caught a sinus infection and had a relapse post-IVIG round 1). But this week, he's making progress again! Started walking around the house barefoot and let Mom cut his hair - probably seem minor, but these were both firsts since his March exacerbation. His progress appears to be back on track!

 

So you might want to hang in there a little longer with the augmentin. I guess it's a judgment call as to when to switch to something else, but Beth M definitely said Sammy's recovery was uneven.

 

Hope that helps, and best of luck!

[Worried_Dad]

Amen to that, Angela. Freaking PANDAS: just when you think your child is finally breaking free of it, it throws another curveball. I just hope and pray that - someday - we're all on this forum posting our child's full recovery story to comfort newbies!!!

 

 

Hi Worried Dad,

Thanks for responding. We've been dealing with some of the ups and downs which I did expect, but with this particular symptom having been GONE for ten days, it made me really worry to see it resurface. I'll hang in there and see what happens. I hate this freaking disorder! Makes me want to scream. My poor girl is having such a crappy day. grrrrrrrrrrrrrrrrrr.

Angela

[thereishope]

If it means anything, my son did not do high dose Augmentin, but I did notice through his recovery he would be improving then I would see a setback wthat would last a few days. Then the odd thing was he would eventually "snap out" of the setback and not only be back to where he was pre-setback but even slightly better. I compared it to watching a computer defrag itself. If you've ever watched a computer defrag itself, it reorganizes info to make it work better and faster. During the process so much gets shifted around and to the human eye it doesn't make sense what's going on. It takes a long time to completely defrag a computer, butin the end it's works better and faster. I can see the brain being similar.

[Worried_Dad]

Wow - I'm a computer geek, and I love this analogy, Vickie! Wish I'd thought of it. (I'll probably lose my geek license now.... ;-)

 

 

If it means anything, my son did not do high dose Augmentin, but I did notice through his recovery he would be improving then I would see a setback wthat would last a few days. Then the odd thing was he would eventually "snap out" of the setback and not only be back to where he was pre-setback but even slightly better. I compared it to watching a computer defrag itself. If you've ever watched a computer defrag itself, it reorganizes info to make it work better and faster. During the process so much gets shifted around and to the human eye it doesn't make sense what's going on. It takes a long time to completely defrag a computer, butin the end it's works better and faster. I can see the brain being similar.

[momaine]

Thank you Vickie,

Every story like this is helpful to me. This is the worst day we've had in a month. Even the day she got the H1N1 Vaccine was not this bad for this amount of time straight. I gave her an extra Advil but it still hasn't helped. Sigh...

Angela

 

If it means anything, my son did not do high dose Augmentin, but I did notice through his recovery he would be improving then I would see a setback wthat would last a few days. Then the odd thing was he would eventually "snap out" of the setback and not only be back to where he was pre-setback but even slightly better. I compared it to watching a computer defrag itself. If you've ever watched a computer defrag itself, it reorganizes info to make it work better and faster. During the process so much gets shifted around and to the human eye it doesn't make sense what's going on. It takes a long time to completely defrag a computer, butin the end it's works better and faster. I can see the brain being similar.

[thereishope]

Yeah, I'm the geek now. I just admitted that I watch my computer defrag itself. It is addicting to watch, though:)

[faith]

Angela,

could I ask if this is the first abx she's been on, or is this just the first time on this high dose? how did she fare before this? you mean she showed improvement right away on the 2000?

 

my guy is not really doing anything great on a month of augmentin and now azith. funny, I corresponded with his teacher via e-mail yesterday telling him how his ocd and behaviors seemed to be on the rise and joked that he seemed to have PMS!..... I actually feel like he's worse on abx......

 

thanks

Faith

[momaine]

Angela,

could I ask if this is the first abx she's been on, or is this just the first time on this high dose? how did she fare before this? you mean she showed improvement right away on the 2000?

 

my guy is not really doing anything great on a month of augmentin and now azith. funny, I corresponded with his teacher via e-mail yesterday telling him how his ocd and behaviors seemed to be on the rise and joked that he seemed to have PMS!..... I actually feel like he's worse on abx......

 

thanks

Faith

 

Dd was a week on 1000mg of regular Augmentin then we upped it to 2000mg augmentin xr. its been 3 weeks on the higher dose. she's had PANDAS for 3 years though, but she had a couple really long spells in the middle where things were mostly controlled. This fall is the worst exacerbation ever and it was just a month ago that i figured out it was pandas. This is the first antibiotic she's ever been on in her whole life. She is 13.

 

We started Advil a few days before Augmentin and she drastically improved right away on the Advil. Then we added Augmentin and I did not see more improvement other than what I saw from the Advil until 10 days into the 2000mg dose when she stopped her tics completely for 10 days. Now they are back yesterday and today. Her ocd is horrible yesterday and today. =(

 

I called Dr. Trifiletti's office today and left a message. I plan to take her as soon as possible. The antibiotics that she is on now were prescribed by our family physician. I need an expert on board. 6 hour drive. will be worth the peace of mind.

 

Angela

[MonicaM]

Angela,

could I ask if this is the first abx she's been on, or is this just the first time on this high dose? how did she fare before this? you mean she showed improvement right away on the 2000?

 

my guy is not really doing anything great on a month of augmentin and now azith. funny, I corresponded with his teacher via e-mail yesterday telling him how his ocd and behaviors seemed to be on the rise and joked that he seemed to have PMS!..... I actually feel like he's worse on abx......

 

thanks

Faith

 

Dd was a week on 1000mg of regular Augmentin then we upped it to 2000mg augmentin xr. its been 3 weeks on the higher dose. she's had PANDAS for 3 years though, but she had a couple really long spells in the middle where things were mostly controlled. This fall is the worst exacerbation ever and it was just a month ago that i figured out it was pandas. This is the first antibiotic she's ever been on in her whole life. She is 13.

 

We started Advil a few days before Augmentin and she drastically improved right away on the Advil. Then we added Augmentin and I did not see more improvement other than what I saw from the Advil until 10 days into the 2000mg dose when she stopped her tics completely for 10 days. Now they are back yesterday and today. Her ocd is horrible yesterday and today. =(

 

I called Dr. Trifiletti's office today and left a message. I plan to take her as soon as possible. The antibiotics that she is on now were prescribed by our family physician. I need an expert on board. 6 hour drive. will be worth the peace of mind.

 

Angela

 

 

 

What is the dosage for the Advil you've given?

[mom md]

Let me admit I have no experience with PANDAS and gynecology but being that I have a son with PANDAS and I am a gynecologist...has anyone even seen what the birth control pill would do. We use it to "shut down " the ovaries and take the stress of hormonal changes out of the picture with some diseases. Day five of her cycle her hormone levels are really low and her body is dealing with the stress of losing blood...maybe if a child was placed on a continuous pill which prevented the cycle. Just a thought.

[nevergiveup]

Great idea mom md, I do that because it keeps my MS symptoms from flairing. I always thought if my dd has hormonal changes and it makes her pandas symptoms worse I would put her on the pill continously too. I have always felt estrogen is immune modulating and maybe it strengthens the BBB. Funny how people with MS seem to do better while pregnant, when the immune system is calm. But I have also read where Sydenhams Chorea can flair again during pregnancy. So, this interests me with the hormonal thing, and I am concerned because my daughter is about 1 year off from puberty. Mom md, any ideas why sc would flair during pregnancy?

[memom]

Hi Mom MD,

 

My daughter (17yo Pandas) is on prolonged cycling OCP's (Seasonique, up from LoSeasonique when she started ABX). She started in August. I am not sure what, if any, influence it has had on her symptoms. I will tell you that it has been wonderful for her dysmenorrhea. Since she started the OC's at the same time we aggressively began treating her Pandas appropriately, the improvements may have been the T&A, steroids and ABX's. I can say it has not worsened her symptoms. I really don't think it has helped either.

 

Ellie (I am a Certified Nurse Midwive in full scope practice as well)