Should all tics be viewed as equal?

[worriedmommy]

Looking to hear from anyone whose main PANDAS issue is tics.

 

My daughter's main issue is tics (although rage, mild OCD and fears are part of her PANDAS package). At her worst she had a tic-cough, throat clear/grunt every few seconds all day long while awake...so upwards of 10000 times per day. It was so easy to track her tics b/c we could hear them. A steroid burst in April brought an end to her 6 months of vocals, and she did great for a few weeks. Then slowly we started to see new tics creep in like eye rolls, and shoulder shrugs. Because these movements affected the way she looked we could still track/count them easily. This past month her tics have morphed again to mostly include hand squeezes and toe scrunches. Between these two tics she is doing one or the other at least once every 15-30 seconds...so A LOT. The tics are hard to notice if you're not looking, and can easily be thought of as normal movement or odd 6 year old behavior. Still, I know they're tics, and I know they're frequent...they just don't seem nearly as bad as when she was having the vocal tics b/c they're so quiet.

 

My understanding, however, is that a tic, is a tic, is a tic. It's just pure luck that she's dealing with quiet ones right now, which give the overall appearance that she's much better off than 6 months ago. If the tics are caused by an assult on her brain I really need to be concerned with the amout of tics she's having rather than the annoyance factor...right? I think I'm just getting nervous b/c in our recent visit with Dr. B we started to discuss IVIG, which scares the death out of me. I'm terrified of doing something so invasive that may not even work for tics that aren't super noticable. On the other hand, I don't feel right doing nothing as there is no guarantee that the vocals won't come back at any second if the underlying cause is still there.

 

Am I on the right track or way off base with this?

[sf_mom]

Non vocals were the last to resolve for us. We were very aggressive with both antibiotics and IVIG. Our son is 6 months post IVIG and does have some TIC free days. With only one minor TIC of rubbing his nose left. I am not willing to say he is 100% recovered yet but we are very close.

 

I'd rule out mycoplasma and lyme/co-infections prior to doing IVIG. If its Lyme/co-infections in conjunction with strep events its very possible you might not need IVIG but perhaps the right combo of antibiotics.

 

-Wendy

 

 

 

Looking to hear from anyone whose main PANDAS issue is tics.

 

My daughter's main issue is tics (although rage, mild OCD and fears are part of her PANDAS package). At her worst she had a tic-cough, throat clear/grunt every few seconds all day long while awake...so upwards of 10000 times per day. It was so easy to track her tics b/c we could hear them. A steroid burst in April brought an end to her 6 months of vocals, and she did great for a few weeks. Then slowly we started to see new tics creep in like eye rolls, and shoulder shrugs. Because these movements affected the way she looked we could still track/count them easily. This past month her tics have morphed again to mostly include hand squeezes and toe scrunches. Between these two tics she is doing one or the other at least once every 15-30 seconds...so A LOT. The tics are hard to notice if you're not looking, and can easily be thought of as normal movement or odd 6 year old behavior. Still, I know they're tics, and I know they're frequent...they just don't seem nearly as bad as when she was having the vocal tics b/c they're so quiet.

 

My understanding, however, is that a tic, is a tic, is a tic. It's just pure luck that she's dealing with quiet ones right now, which give the overall appearance that she's much better off than 6 months ago. If the tics are caused by an assult on her brain I really need to be concerned with the amout of tics she's having rather than the annoyance factor...right? I think I'm just getting nervous b/c in our recent visit with Dr. B we started to discuss IVIG, which scares the death out of me. I'm terrified of doing something so invasive that may not even work for tics that aren't super noticable. On the other hand, I don't feel right doing nothing as there is no guarantee that the vocals won't come back at any second if the underlying cause is still there.

 

Am I on the right track or way off base with this?

Edited July 8, 2010 by SF Mom

[lfran]

Looking to hear from anyone whose main PANDAS issue is tics.

 

My daughter's main issue is tics (although rage, mild OCD and fears are part of her PANDAS package). At her worst she had a tic-cough, throat clear/grunt every few seconds all day long while awake...so upwards of 10000 times per day. It was so easy to track her tics b/c we could hear them. A steroid burst in April brought an end to her 6 months of vocals, and she did great for a few weeks. Then slowly we started to see new tics creep in like eye rolls, and shoulder shrugs. Because these movements affected the way she looked we could still track/count them easily. This past month her tics have morphed again to mostly include hand squeezes and toe scrunches. Between these two tics she is doing one or the other at least once every 15-30 seconds...so A LOT. The tics are hard to notice if you're not looking, and can easily be thought of as normal movement or odd 6 year old behavior. Still, I know they're tics, and I know they're frequent...they just don't seem nearly as bad as when she was having the vocal tics b/c they're so quiet.

 

My understanding, however, is that a tic, is a tic, is a tic. It's just pure luck that she's dealing with quiet ones right now, which give the overall appearance that she's much better off than 6 months ago. If the tics are caused by an assult on her brain I really need to be concerned with the amout of tics she's having rather than the annoyance factor...right? I think I'm just getting nervous b/c in our recent visit with Dr. B we started to discuss IVIG, which scares the death out of me. I'm terrified of doing something so invasive that may not even work for tics that aren't super noticable. On the other hand, I don't feel right doing nothing as there is no guarantee that the vocals won't come back at any second if the underlying cause is still there.

 

Am I on the right track or way off base with this?

My son has had motor and vocal tics for almost 5 years. They switch every few weeks or so to something new; as you say, some are more obvious and/or annoying than others. The worst for us were jaw-dropping (I was afraid he would choke on food or while swimming) and cheek slapping (loud and obvious -- could hear him from rooms away). The "best" were the quiet ones -- abdominal tensing, etc. But I agree that the frequency is probably what is important to track, since our history shows that they morph from one to another to another with no rhyme or reason. (Although I wonder, since almost all kids seem to start off with eye rolling or blinking, maybe these take the least amount of stimulation and can be considered more minor than ones which involve limbs or larger muscle groups? Just a thought).

[Fixit]

(Although I wonder, since almost all kids seem to start off with eye rolling or blinking, maybe these take the least amount of stimulation and can be considered more minor than ones which involve limbs or larger muscle groups? Just a thought).

 

I wonder about this too...

 

And i had heard...and sometimes agree, a tic is a tic...but we didn't have vocals till this year...3-5 eye blink,,,5-9 shoulder shrug...9..started in legs..now they can be anywhere and vocals started end of this FEB....so it's almost like it gets deeper...

 

i've heard vocals are the are the hardest to clear....so is it harder to get to the deeper ones....or should it work in reverse order...

 

VOCALS ..are the worst..they surround you, your child...i think they even realize, as long as no one is looking ..no one can notice...but sounds...constant sounds..it is hard to be around even when you love them more than anyone else ever will!!!!

 

But...when my son got the screech/screem....scott thought it might be yeast????

so we did vanco and diflucan....day 12 all vocals gone

i screw up abx..double down on antifungals and screems come back stronger than ever

we repeat vanco-difluc....day 12 screech gone..but was filled in with sneeze(like lauren), popcorny clearing,ch ch, air pushes(but thank God the Screches are gone,,but it seemed he could surpress the screech in pulic better then the other lesser sounds that took over....

so i wonder if he still has some yeast going on????

 

ANd for my poor ds that is every 10 seconds and motors...some chained together with no pattern

NO ONe should have to live like that!!!!!!!!!!!

ANd a child.....i don't get what God has in mind for these kids!!!!!!

[worriedmommy]

Thanks for your replies. I agree that VOCALS are the worst. Her cough/throat clear was like nails on a chalk board to me and dh. Even now she'll do a throat clear here and there and I immediately tense up thinking that the CONSTANT vocals will be back. Thankfully, for now they're not. The motor tics for now are so mild in nature...a drastic difference from the abdominal jerks she had a few months ago that made her cry at times they hurt so bad. Poor child...it is simply not fair for any of these kids to deal with this disorder.

 

The connection to yeast in interesting. Dd starting scratching her head and body violently a few weeks ago. Dr. B though perhaps it was yeast and she's now on Diflucan daily. We're on day 8 of diflucan and the scratching has reduced, as has the frequency of her motor tics.

[Fixit]

Thanks for your replies. I agree that VOCALS are the worst. Her cough/throat clear was like nails on a chalk board to me and dh. Even now she'll do a throat clear here and there and I immediately tense up thinking that the CONSTANT vocals will be back. Thankfully, for now they're not. The motor tics for now are so mild in nature...a drastic difference from the abdominal jerks she had a few months ago that made her cry at times they hurt so bad. Poor child...it is simply not fair for any of these kids to deal with this disorder.

 

The connection to yeast in interesting. Dd starting scratching her head and body violently a few weeks ago. Dr. B though perhaps it was yeast and she's now on Diflucan daily. We're on day 8 of diflucan and the scratching has reduced, as has the frequency of her motor tics.

 

all the years ds has been on abx(3 times a year over 7 years????) i never gave probiotics

so to add...the vocals(scream/schreech) didn't come in till...we started biaxin and burst...and though i added a llllooooowwwww dose probiotic..i believe his gut was in a bad state before we started(i've done spit test with him and dh and both get the strings) and that was the begining of the end...so i believe it will take more than a few months to get his gut in order...

can someone who understands digestion confirm my last sentence???