Day 11 of Biaxin....some improvements, but still so many tics!

[worriedmommy]

I'm fairly new to this forum, and to the term PANDAS. I'm one who only first heard of it last fall when Lauren Johnson was on the news with her sneezing tic. Oddly, I found her story b/c I was frantically researching to see what could have possibly caused my dd (age 5) cough tic. Aside from Lauren having a sneeze tic and my dd having a cough tic, their stories were almost exact. When I found out that Lauren's condition was liked to Group A Strep, I couldn't believe it, as strep had been a HUGE issue with dd.

 

DD suffered from odd rashes in her diaper area starting at 17 months old. These were not your run-of-the-mill diaper rash. They were evil, red, itchy and DID NOT GO AWAY with diaper cream, anti-fungal cream, or anything the doctors would perscribe. (At around 18 months of age, dd had a DRAMATIC personality change. She went from a super happy, sweet child to a horrible, rage-filled, angry toddler within a matter of weeks. People said it was just the terrible twos setting in early...but this was EXTREME. It was beyond any bad behavior I've ever witnessed from my other child, any relatives or friends kids.) Dd continued to suffer from these off and on for 4 years...until she was officially swabbed and confirmed as having Group A peri-anal Strep this past July. It was treated, but came back...along with strep throat in Sept. She got sick with presumed H1N1 at the end of Oct, and the cough tic started in Nov.

 

On my PANDAS hunch, I got her on Amoxicillin for 10 days in Dec, and the cough subsided. It came back as soon as Amox was done, so a month later we tried Augmentin for 10 days. Cough went away completely for 2 weeks. Then in early Feb she woke up one day with a vocal (thorat noise) tic and a handful of complex motor tics that were CONSTANT. Come to find out there were 11 cases of strep throat in her classroom. She tested negative that day and started Amox. as a preventative, but I'd say it was pretty clear the "canary" effect happened with her....although I still don't understand how that happens.

 

We've since had a consult with Dr. T, who believes this is PANDAS or PANDAS-like. We're on day 11 of Biaxin, and the unexpected thing is that dd's mood and demeanor has improved greatly. Over the years we've grown to accept dd's "demeanor" as who she is. It's only now that she's on the Biaxin that I'm beginning to think that maybe my sweet child has just been buried under this disease for the past 4 years!!! She even said out of the blue this past weekend that her "naughty days" are over b/c she just wants to do nice things for people and feel happy all the time. When asked to explain she said she is just so happy and has never felt like this and wants to stay happy forever. Not your typical conversation with a 5 year old. We've even noticed improvement with other things we never thought might be related to PANDAS. She hasn't expressed her fear of starting 1st grade in Sept in days (she was doing this daily), she went upstairs in our house yesterday by herself, she told DH that she couldn't wait to get to school yesterday (another daily "dread" for her.)

 

So, I'm left to wonder if these behavior changes ARE a result of the Biaxin. Her tics are still very frequent...every 3-5 seconds while she's awake...so over 10,000 per day. They are milder in severity than they were when they first started, though. I'm happy about that, but cannot get past the frequency of them.

 

Anyone out there who's child suffered from constant tics? If she's having positive behavioral responses to Biaxin, is this a clue that tic improvement will follow? Believe me, I am happy and thankful for every baby step she's making. I just need to know that there is hope for these tics.

[monarchcat]

My son's tics have waxed and waned and haven't seemed to be all that affected by treatment (antibiotics and a 30 day course of steroids). I suspect the steroids may even have made them worse for awhile (we had his first ever vocal tic about 4 weeks post steroids). However, he definitely has PANDAS and the abx make a big difference in mood and behavior. I've read that the tics can be the toughest thing to get rid of. Right now we are in a waning period and he is fairly tic-free after months of various tics of varying intensity. He was off abx for about two weeks and his behavior/mood lability/irritability/irrationality were all awful, but the tics have remained at bay for the moment. So, yes, in my son's case it seems as though abx affects mood and behavior more than it affects the tics.

 

I'm fairly new to this forum, and to the term PANDAS. I'm one who only first heard of it last fall when Lauren Johnson was on the news with her sneezing tic. Oddly, I found her story b/c I was frantically researching to see what could have possibly caused my dd (age 5) cough tic. Aside from Lauren having a sneeze tic and my dd having a cough tic, their stories were almost exact. When I found out that Lauren's condition was liked to Group A Strep, I couldn't believe it, as strep had been a HUGE issue with dd.

 

DD suffered from odd rashes in her diaper area starting at 17 months old. These were not your run-of-the-mill diaper rash. They were evil, red, itchy and DID NOT GO AWAY with diaper cream, anti-fungal cream, or anything the doctors would perscribe. (At around 18 months of age, dd had a DRAMATIC personality change. She went from a super happy, sweet child to a horrible, rage-filled, angry toddler within a matter of weeks. People said it was just the terrible twos setting in early...but this was EXTREME. It was beyond any bad behavior I've ever witnessed from my other child, any relatives or friends kids.) Dd continued to suffer from these off and on for 4 years...until she was officially swabbed and confirmed as having Group A peri-anal Strep this past July. It was treated, but came back...along with strep throat in Sept. She got sick with presumed H1N1 at the end of Oct, and the cough tic started in Nov.

 

On my PANDAS hunch, I got her on Amoxicillin for 10 days in Dec, and the cough subsided. It came back as soon as Amox was done, so a month later we tried Augmentin for 10 days. Cough went away completely for 2 weeks. Then in early Feb she woke up one day with a vocal (thorat noise) tic and a handful of complex motor tics that were CONSTANT. Come to find out there were 11 cases of strep throat in her classroom. She tested negative that day and started Amox. as a preventative, but I'd say it was pretty clear the "canary" effect happened with her....although I still don't understand how that happens.

 

We've since had a consult with Dr. T, who believes this is PANDAS or PANDAS-like. We're on day 11 of Biaxin, and the unexpected thing is that dd's mood and demeanor has improved greatly. Over the years we've grown to accept dd's "demeanor" as who she is. It's only now that she's on the Biaxin that I'm beginning to think that maybe my sweet child has just been buried under this disease for the past 4 years!!! She even said out of the blue this past weekend that her "naughty days" are over b/c she just wants to do nice things for people and feel happy all the time. When asked to explain she said she is just so happy and has never felt like this and wants to stay happy forever. Not your typical conversation with a 5 year old. We've even noticed improvement with other things we never thought might be related to PANDAS. She hasn't expressed her fear of starting 1st grade in Sept in days (she was doing this daily), she went upstairs in our house yesterday by herself, she told DH that she couldn't wait to get to school yesterday (another daily "dread" for her.)

 

So, I'm left to wonder if these behavior changes ARE a result of the Biaxin. Her tics are still very frequent...every 3-5 seconds while she's awake...so over 10,000 per day. They are milder in severity than they were when they first started, though. I'm happy about that, but cannot get past the frequency of them.

 

Anyone out there who's child suffered from constant tics? If she's having positive behavioral responses to Biaxin, is this a clue that tic improvement will follow? Believe me, I am happy and thankful for every baby step she's making. I just need to know that there is hope for these tics.

[peglem]

Canary effect:

 

When somebody 1st gets an invader/infection- strep for instance, the immune system has to make antibodies "from scratch," meaning the circulating, undifferentiated immune cells have to investigate the new microbe and fashion "soldiers" to attack it effectively- according to proteins (antigens) it detects on the invader. It produces massive amounts of "soldiers," specific for that microbe (more or less- maybe different microbes presenting similar antigens) until it has eradicated the invader. Then, it stores some copies of the soldiers- to make attacking that microbe quicker and easier the next time it is detected in the body and to hopefully eradicate it before it can take hold and cause infection/damage.

In PANDAS, one or more of those soldiers is activating basal ganglia cells, causing neuropsychiatric symptions. So, upon just simple exposure to strepA- the immune system recognizes the invader and responds with an army of quickly replicated soldiers. This keeps your child from getting actually infected with strep- but increases the soldiers who can't tell the difference between the invader and your basal ganglia. So the neurological symptoms present, w/o an actual infection occurring. So, like the canary in the mine, showing that there are toxic gases, your child's behaviors show there is strep in the environment.

Edited March 18, 2010 by peglem

[worriedmommy]

Thanks for the explanation. Our local neurologist raised an eyebrow when I tried to say that dd's sudden onset could be related to the 11 confirmed cases in her classroom. She felt that since dd swabbed negative, and had no titer response that was not possible. Luckily, I was expecting that response, had already spoken with Dr. T and am awaiting another appt in Boston tomorrow. I want multiple INFORMED doctors all agreeing on dd's diagnosis.

Canary effect:

 

When somebody 1st gets an invader/infection- strep for instance, the immune system has to make antibodies "from scratch," meaning the circulating, undifferentiated immune cells have to investigate the new microbe and fashion "soldiers" to attack it effectively- according to proteins (antigens) it detects on the invader. It produces massive amounts of "soldiers," specific for that microbe (more or less- maybe different microbes presenting similar antigens) until it has eradicated the invader. Then, it stores some copies of the soldiers- to make attacking that microbe quicker and easier the next time it is detected in the body and to hopefully eradicate it before it can take hold and cause infection/damage.

In PANDAS, one or more of those soldiers is activating basal ganglia cells, causing neuropsychiatric symptions. So, upon just simple exposure to strepA- the immune system recognizes the invader and responds with an army of quickly replicated soldiers. This keeps your child from getting actually infected with strep- but increases the soldiers who can't tell the difference between the invader and your basal ganglia. So the neurological symptoms present, w/o an actual infection occurring. So, like the canary in the mine, showing that there are toxic gases, your child's behaviors show there is strep in the environment.

[EAMom]

For our dd tics are normally the last symptom to go away when dd is getting over an exacerbation. Mood improvement (ie 5-7 days) is the first thing we notice, then reduction of OCD (a couple of weeks), tics/movements were the last (ie 6 weeks).

[wornoutmom]

Canary effect:

 

When somebody 1st gets an invader/infection- strep for instance, the immune system has to make antibodies "from scratch," meaning the circulating, undifferentiated immune cells have to investigate the new microbe and fashion "soldiers" to attack it effectively- according to proteins (antigens) it detects on the invader. It produces massive amounts of "soldiers," specific for that microbe (more or less- maybe different microbes presenting similar antigens) until it has eradicated the invader. Then, it stores some copies of the soldiers- to make attacking that microbe quicker and easier the next time it is detected in the body and to hopefully eradicate it before it can take hold and cause infection/damage.

In PANDAS, one or more of those soldiers is activating basal ganglia cells, causing neuropsychiatric symptions. So, upon just simple exposure to strepA- the immune system recognizes the invader and responds with an army of quickly replicated soldiers. This keeps your child from getting actually infected with strep- but increases the soldiers who can't tell the difference between the invader and your basal ganglia. So the neurological symptoms present, w/o an actual infection occurring. So, like the canary in the mine, showing that there are toxic gases, your child's behaviors show there is strep in the environment.

 

 

Thanks so much for this post!!! This is the best explanation I've read! I want to print it out and tape it to my son's medical file at the clueless pediatrician's office!!!

[simplygina]

Our experience has pretty much mirrored yours. We're on day 16 of Biaxin and the mood changes have been dramatic, starting in the 2nd. DS says he feels like he has less OCD and tics as well, but I'm still noticing there are a few very persistent behaviors going on. Mainly he has to touch things an even amount of times on both sides and will continue until it feels just right. I guess considering that some kids can do this for hours, and he only does it for less than a minute, I shouldn't complain but it is definitely still there. His main tic seems to also have an ocd component. He says he feels like he can see lines and needs to get them all evened up by shaking his head. He also has a tic where he looks far to one side, then he shrugs and looks over his shoulder. Usually it is only once, but at night when he is tired he can also do it several times.

 

I keep telling myself, if we maintained this level of improvement, especially in his mood, I'm OK with that. But honestly I'd really like to see it all disappear. I keep reminding myself to be patient and that it will take some time to heal.

[LNN]

We had tic-dominant PANDAS for the first year. Now, post-plasmapheresis, we only have an occasional/brief tic and it's more OCD. Prior to pheresis, tics - weren't nearly as frequent as yours but were violent (e.g. he'd make the whole table shake if his hands were on it, if he held a glass of milk, his hand would jerk so spastically the milk would go flying across the room). He looked like he was being electrocuted. We suffered with echolalia and other vocal tics too.

 

Like EA mom, we first saw mood improvement, then reduction of rage, anxiety and OCD, then tics - which subsided very slowly. The last tics to go were the ones that resembled "normal" behaviors only exaggerated - like the cough tic. My son was an antibiotics for three months and had a T&A and had done a month of prednisone and most stuff was gone but residual tics remained. That's why we opted for pheresis - the tics and cognitive fog weren't completely going away and a new school year of germs was on the horizon.

 

To this day, when I see a tic, even if only for a few hours - I go thru the roof with anxiety. I can't explain why, since the OCD is actually more crippling. But the tics just bring such flashbacks of fear.

 

Since pheresis last Aug, my son has been much better. I credit the pheresis with eliminating 99.5% of tics and in the 7 months since, we've had less than 10 days with any tics whatsoever. But DS hasn't enjoyed long remissions from other symptoms - he's a canary and between Oct and now it's nearly impossible to keep him away from other kids with strep. So we are probably headed toward IVIG. He's only 7, so we need to do something to keep this from getting worse.

 

I don't mean to imply that you have to do pheresis or IVIG to get rid of the tics. I don't think anyone knows the answer to that. But you may have to prepare yourself for a long slow recovery from tics with just abx - and I would do everything in your power to get prophylactic antibiotics - a 10 or 20 days course probably isn't enough time for the body to calm down on its own. Without the abx to keep new infections at bay, the tics may never have a chance to fully subside. That was our experience anyway.

 

That being said, do try to enjoy the gains you're seeing too. It's so easy to be distracted by the tics. You have to try, as hard as it is, to look past that and savor your hard won accomplishments for your child.