Better behavior, but increased tics....?

[monarchcat]

DS has been on a month of Augmentin (regular Augmentin for 3 weeks, and now Augmentin XR for a week), prior to that he was on Azithromycin for several months and did a 30 day course of steroids. He presents with mostly tics, mood issues, irritability, some ocd-tendencies (nothing major).

 

Through this whole process we have seen improvements in mood, behavior, irritability, irrationality, etc. It's been somewhat saw-toothed, but the overall trend has been good. EXCEPT, the tics are worse than ever, including his first-ever vocal tic (sort of a soft snorting).

 

He used to have the tics come and go, usually one at a time, and there would be periods (weeks to months) where he would be tic-free. He now has multiple tics that are not waning. Has anybody who has a child with tics seen this kind of reaction? I want to believe the abs are working on the PANDAS as his mood/behavior is much improved (and his CAM K II score was down to 136 (from 193) after the pred), but the tics are relentless.

 

What could be going on? If I look at the timeline, the tics have been getting worse ever since we started treating for PANDAS in the early fall. Could the antibiotics cause this, even as it's helping the other symptoms?

[Kayanne]

Did your son's tics getting worse coincide with his prednisone treatment?

 

Sometimes I wonder if there is such a thing as a PANDAS/Tourettes overlap because it seems like tics are the hardest to treat with PANDAS.

 

And I have been wondering if maybe the supplementation protocol, diet changes, etc...that are discussed more on the TS board would benefit some kids whose tics seem to linger.

 

...these are just my wandering thoughts....I have nothing to back them up...

 

~Karen

[monarchcat]

Did your son's tics getting worse coincide with his prednisone treatment?

 

Sometimes I wonder if there is such a thing as a PANDAS/Tourettes overlap because it seems like tics are the hardest to treat with PANDAS.

 

And I have been wondering if maybe the supplementation protocol, diet changes, etc...that are discussed more on the TS board would benefit some kids whose tics seem to linger.

 

...these are just my wandering thoughts....I have nothing to back them up...

 

~Karen

 

I would say they started getting worse before the pred started, but definitely continued to get worse during and after the pred.

 

It seems as though it's definitely possible that there is another underlying cause for the tics. He did show some IgG food sensitivities, so maybe those are now causing problems (though I don't think they were always the main cause since he would be tic-free in the past on the same diet).

 

I will definitely check out the TS board for some more info. Thanks!

[faith]

monarchat,

So basically the abx never really had much of an effect on the tics? and both during and after steroids, no real improvement and maybe worse?

 

Don't know if you recall, but "Char" seems to have had the same experience, when she started the pred she felt her son's tics got worse, and it was also a snorting sound which he'd never had before. I think her experience is what kind of scared me off of trying the steroids. you could contact her if you want to know more.

 

could you remind me of your son's PANDA history,...does he get strep or have hi titers? how long has he had tics?

 

Faith

[monarchcat]

monarchat,

So basically the abx never really had much of an effect on the tics? and both during and after steroids, no real improvement and maybe worse?

 

Don't know if you recall, but "Char" seems to have had the same experience, when she started the pred she felt her son's tics got worse, and it was also a snorting sound which he'd never had before. I think her experience is what kind of scared me off of trying the steroids. you could contact her if you want to know more.

 

could you remind me of your son's PANDA history,...does he get strep or have hi titers? how long has he had tics?

 

Faith

 

Right, abx have not had an effect on the tics. No improvement in tics on steroids, and first vocal started a month after finishing steroids.

 

Basic history in a nut shell: Behavioral changes starting after 5th birthday: anger, anxiety, irritability. Tics started at age 6 with eye blink (but more gradual, not sudden-onset). Tics would wax and wane and change over the next year-sometimes tic-free. Did not have strep that we knew about. About a year ago (age 7) he started very sudden, severe, head/neck thrust tic after being tic-free for months. Diagnosed with strep at the same time. A few months after that he had strep again and developed separation anxiety and irrational/obsessive fears. This waned over about 2 weeks following abs for strep. ASO Titers were low (<20) 5 weeks after strep. CamK in August before any treatment was 193 (3 out of 4 anti-neuronal antibody levels above normal), CamK following a month of steroids was 136, and anti-neuronal antibodies in high-normal range.

[faith]

just re your history,

well that is at least telling that the increased symptoms coincided with some strep. I have that same history as well. but no strep connection in the past three years that I am aware of. low titers as well.

 

what I find interesting to note is that you say there were two strep episodes? they were confirmed, yes?

but subsequent titers testing showed normal? so they did not mount? I am wondering if that proves anything to the mainstream docs? shouldn't it be automatic if we know there was a definite strep infection? do they have an explanation as to why the titers didn't verify that? (I know that some don't mount a response, but I'm just playing devils advocate here for the docs who are looking at strep titers as the telltale sign).

 

vocals are the force to be reckoned with in my son, they are the one tic that always sticks around, so I think no one can blame me for being afraid that something may increase that. I don't know if this is all coincidence, but hearing that you also had a vocal start after pred makes me wonder. coincidence? maybe a gets worse before better? don't know?

 

Would you consider going off abx for a bit to see if things get better? since you say its not really helping dramatically, maybe a trial of no abx might be interesting? (this isn't advice, just a thought).

 

Faith