Our otherwise healthy son has been ticcing for almost 4 months...

[peacebstill]

Hello,

 

Our son has been ticcing for the last 4 months now, he nods his head up and down and sometimes he'll wave his arms or jump a bunch. Before this began, he had a cold that lasted almost 4 weeks I was afraid it might turn into a worse repiratory infection-he's had pneumonia before. Before school started, we wanted him to get over it and the doctor prescribed Amoxicil. A few weeks later, he started nodding his head and hasn't stopped since - some days are less severe than others. He was not tested for strep.

 

-we thought maybe the anitbiotics caused the ticcing (?)

-he also started Flovent daily at the same time as starting antibiotics as well as Singulair

-Singulair and Amoxicil contain aspartame, also curious if this could have interefered with his system

-we've taken him off of Singulair and Flovent, he only uses Ventolin when necessary, which has been a huge relief

-we've been supplementing with Vit D, Omega 3, good multivitamin and using herbal remedy for when asthma

symptoms begin, we've had good results so far

 

If this is related to PANDAS, would strep show up all these months later? Is this worth looking into?

 

I've read a lot about oxidative stress and ticcing and we have our son taking a supplement to combat this, it's only been a few weeks, at first we thought we saw results, and then the tics became more intense the following week and now they seem to be easing again.

 

I'm so curious, our otherwise healthy son is having these issues. Any thoughts or directions???

 

Jennifer

[sf_mom]

It could be chronic underlying infection or PANDAS. If there is an infection, sometimes symptoms are worse with antibiotic treatment due to herxhiemer response - die off. I recommend you take the time to investigate all potential causes for the TICs inclusive: Strep, Mycoplasma, Lyme/co-infections, parasites, viruses, molds, allergens (especially food for gluten/casein), environmental toxins. A good LLMD/DAN DR. could probably help you with all the tests to unravel true cause.

 

Our trigger was strep but the underlying infections are Lyme/co-infections.....

 

-Wendy

Edited December 5, 2010 by SF Mom

[adkmom]

Hi,

 

I'm new at this too. But do you have the list of criteria for a PANDAS diagnosis? It's my understanding that he would need to also have a host of behaviorial symptoms along with the tic. And the tic must have appeared suddenly.

[PhillyPA]

How old is your child?

 

My son did jumping too. However the jumping was not a tic, it was a compulsion. An OCD type of behavior. He has tics too.

 

Yes, symptoms can show up months later. My son's symptoms started about three months after strep exposure. It was dramatic and an overnight change.

[Kayanne]

I just wanted to point out that many PANDAS children see improvement on antibiotics and don't experience a herxheimer reaction.

 

Amoxicillin is not really a good antibiotic for strep or pneumonia. So, my thoughts are that you may need to try a different one such as Augmentin, Zithromax or Biaxin, Keflex or Omnicef.

 

Also, are there any other behavioral symptoms that your son is having or is it only tics? I think that is a consideration. Do check out the TS board, and the Lyme board here too.

 

I am not sure that you have to have behavioral changes too...I know you don't have to have tics, so on the flip side, I would think that if a child only has tics, then PANDAS/PITANDS should be investigated.

 

Even "traditional" (and I use that term lightly for lack of a better one) Tourette's Syndrome is very often co-morbid with OCD and ADD. Across the board, neuropsych disorders overlap tremendously...the key is to find the trigger. Which I think you are already of that mindset.

 

Try to test everyone in your household for current strep infections. Wierd stuff here...but PANDAS kids react to strep in their environment.

 

Good Luck, welcome to the forum. I'm really sorry that you are here, but it is the best "here" on the web!

[mom love]

I agree with everything Kayanne wrote. You can only have a tic or tics. There may or may not be even subtle things you have otherwise overlooked or not known are pandas related as well. Your general doctor can run the basics if he or she will do it. ASO and Antidnase b strep titers, which rise over time so is best to run again in about 4 weeks, mycoplasma pneumonia, and lyme western blot are good basics. At least get the strep and myco p if they will run it. With a long respiratory illness, you could suspect both strep and myco p. My daughter's issues have definitely included strep, with titer rising only slightly, and most recently with myco p causing only a tic with it and no symptoms of myco p except the tic and positive blood test. zithromax is good for myco p and some strep and augmentin and omnicef are good for strep generally. If your local doc will not at least run the blood tests, and possibly consider a trial run of weeks of antibiotic, try to find a pandas expert or a lyme expert as they have been reported here to look at it all. It is my humble opinion that yes things like aspertame can trigger neurological symptoms, but in my daughter's case, I believe that was only after the blood brain barrier had been breeched by an infectious agent like strep or myco p. IMHO you have to investigate the infections.

[Fixit]

agree...and as in "transient tics" very likely an illness related with a noted time of illness and disappears with reovery

and if parents doesn't note an illness..it may have been a month or 2 prior so they may not put it together...

or a more subclinical illness that resolved itself..

[eljomom]

Just curious about pandas kids reacting to strep in the environment---wouldn't they have some sort of positive ASO or Anti-dnaseB from that? Or get strep?? Don't really understand this.

 

 

I just wanted to point out that many PANDAS children see improvement on antibiotics and don't experience a herxheimer reaction.

 

Amoxicillin is not really a good antibiotic for strep or pneumonia. So, my thoughts are that you may need to try a different one such as Augmentin, Zithromax or Biaxin, Keflex or Omnicef.

 

Also, are there any other behavioral symptoms that your son is having or is it only tics? I think that is a consideration. Do check out the TS board, and the Lyme board here too.

 

I am not sure that you have to have behavioral changes too...I know you don't have to have tics, so on the flip side, I would think that if a child only has tics, then PANDAS/PITANDS should be investigated.

 

Even "traditional" (and I use that term lightly for lack of a better one) Tourette's Syndrome is very often co-morbid with OCD and ADD. Across the board, neuropsych disorders overlap tremendously...the key is to find the trigger. Which I think you are already of that mindset.

 

Try to test everyone in your household for current strep infections. Wierd stuff here...but PANDAS kids react to strep in their environment.

 

Good Luck, welcome to the forum. I'm really sorry that you are here, but it is the best "here" on the web!

[butterflymom]

=

Edited February 2, 2016 by tampicc

[eljomom]

So just another thought about this---tics often get worse with excitement---thanksgiving, friends visiting. ONce home and back to normal, tics minimize??

 

Just wanted to mention that I've read that regular Amox has a fairly high failure rate for strep, so I concur with trying another antibiotic. Maybe Augmentin? That's worked well for us.

 

Also, regarding "reacting to strep, but not catching it"---I believe we just experienced this over Thanksgiving weekend when one of my son's cousin had impetigo. He was on abx for it, but two younger children in that same family were running around the house, passing out food, picking their noses. . . might as well have been licking my son! My son started blinking A LOT and nodding some within 24 hours, and I panicked. However, after we went home and were removed from the source, it diminished quickly, within 2 days. I feel he 'reacted' but did not 'catch' strep, and he handled it fairly well with just a minor or 'mini' exacerbation.

[3boysmom]

Just wanted to add a quick comment about what we are just finding out:

 

10 year old with PANDAS and (9 year old brother and 8 year old brother)

 

Dr. L asked about the brothers, we mention the 8 year old getting head tics and the 9 year old getting HSP all at the same time as the 10 year old got PANDAS. she asked for their titers to be tested and check to see if T & A surgery could be a possibility (and culture the tonsils when they come out).

 

Well I have run the kids into the doctor for countless rapid and 72 hour strep tests over the coarse of this year and they are always negative. Well the 9 year old's titers came back almost 800 and the 8 year old with head tics, almost 500. The 9 year old was treated for strep after he had HSP (that's how we knew he had step) but it has been almost a year...so maybe that would explain a bit of the high titers..? The 8 year old has had no signs of strep at all! Tonsils came out last week and the removed tonsils cultured positive for strep! 2 weeks of antibiotics and the head tics, vocal tic and hyperness are no longer there....what does this mean? Will they come back now that the antibiotics have ended yesterday or was it the strep in the tonsils causing this? If they come back, how will I get more antibiotics without a positive infection or any severe behavior symptoms? Is this PANDAS and what next?

Edited December 5, 2010 by 3boysmom

[Kayanne]

Just wanted to add a quick comment about what we are just finding out:

 

10 year old with PANDAS and (9 year old brother and 8 year old brother)

 

Dr. L asked about the brothers, we mention the 8 year old getting head tics and the 9 year old getting HSP all at the same time as the 10 year old got PANDAS. she asked for their titers to be tested and check to see if T & A surgery could be a possibility (and culture the tonsils when they come out).

 

Well I have run the kids into the doctor for countless rapid and 72 hour strep tests over the coarse of this year and they are always negative. Well the 9 year old's titers came back almost 800 and the 8 year old with head tics, almost 500. The 9 year old was treated for strep after he had HSP (that's how we knew he had step) but it has been almost a year...so maybe that would explain a bit of the high titers..? The 8 year old has had no signs of strep at all! Tonsils came out last week and the removed tonsils cultured positive for strep! 2 weeks of antibiotics and the head tics, vocal tic and hyperness are no longer there....what does this mean? Will they come back now that the antibiotics have ended yesterday or was it the strep in the tonsils causing this? If they come back, how will I get more antibiotics without a positive infection or any severe behavior symptoms? Is this PANDAS and what next?

 

Dr L. believes in prophylaxis. If you are not having severe behavior symptoms, that is a good thing...so full-strength antibiotics may not be warranted. I know she treated my daughter's second exacerbation even though there was no evidence she had strep (just her siblings). You don't have to convince Dr. L, just see her again if the tics start up, or call and ask for more antibiotics.

Edited December 5, 2010 by Kayanne

[3boysmom]

He is not the PANDAS son.... As far as we know.

He is not the son that she saw and we have called and emailed, but with no response back. When the Cunningham tests come back, we may need to take another trip to see her ( with all three boys.). Expensive flight from Texas!

[Fixit]

2 weeks of antibiotics and the head tics, vocal tic and hyperness are no longer there....what does this mean? Will they come back now that the antibiotics have ended yesterday or was it the strep in the tonsils causing this? If they come back, how will I get more antibiotics without a positive infection or any severe behavior symptoms? Is this PANDAS and what next?

 

you go back to doc L and i have no doubt, if they come back...she will try more abx..w or w/o titiers....

or you can try to go to local ped and see if you abx for something that might show up now that tonsils are gone....

i think abx are first line of defencse with quality pandas doc..

[Fixit]

He is not the PANDAS son.... As far as we know.

He is not the son that she saw and we have called and emailed, but with no response back. When the Cunningham tests come back, we may need to take another trip to see her ( with all three boys.). Expensive flight from Texas!

 

 

UMMMHHH..yes he is...and now triggered, strep may not be the only trigger going forward...

tics are pandas sign...

my ds only had simple tics that would remit 100% with abx...

now they are complex and never ending and tiresome....i wish we could live on tapers(bursts seem a waste...if you are going to test with a burst...you might as well see if you can get remission with a taper..JMHO)