Tic Question

[airial95]

My 2 1/2 yr old PANDAS son has dealt primarily with OCD, ADHD, and ODD during his journey so far. We've been very lucky that we haven't had to deal with the tic aspect of it - yet.

 

I say yet, because I've been noticing something, but i'm not sure if you would identify it as a tic or just something weird 2 year olds do. (a common question in our family!) He shuts his eyes very tightly and moves his head to the side. It's like a blink - but longer, but not quite a grimace. I'd compare it to the type of face one would make if they were swallowing something unpleasant - but far less animated.

 

I noticed it for the first time in church last week, and he was having a bad morning, with sound hypersensitivity and ADHD off the charts. I kept an eye on it, and notcied it stopped about an hour or so after church. I made a mental note to keep an eye on him, but also thought he may have been continuing to do it since he knew it was getting my attention.

 

I've kept an eye on him all week - I didn't ask the teachers to specifically look out for that last week, because I wanted an objective opinion of it, and they always report new behaviors. This is obvious enough that if was doing it at school they'd report it. He was fine (although "fine" is a relative term with PANDAS).

 

On Saturday morning, we went to an exercise class and then the park with his sister, and I noticed him doing it again in the stroller during the walking class. He continued to do it at the park (but not as often), and by the time we stopped for lunch it stopped. He had a great day at the class and park, with only a little anxiety about the bouncy house (he loves them, but for some reason it was "wrong" that day.)

 

On Sunday morning, it reappered again at a birthday party, but only a few times and then nothing. He was suprisingly well behaved at the party too - although a little OCD constantly picking up toys after the other children (but happily! He didn't get angry when they pulled the toys back out - just went along behind them picking them up again.)

 

It doesn't happen in rapid succession, once a minute would probably be an eggagerated description. But it's often enough that it has gotten our attention.

 

What's odd to me is that it only has happened these 3 times, in the morning, and it stops. Is this normal for a tic? Can it come and go like that or is this just something quirky (our daughter did this when she was about 20 months or so - my husband was convinced she was having some sort of seizure - sure enough, she was just doing it because it got daddy's attention. The first time he didn't react to it was the last time it happened!) I've been careful not to make too big of a notice of it, in case it is just attention related.

 

But I thought that tics were more persistent - didn't come and go like that. All three times it happened we were out of the house, could that be a factor?

 

We've not had to deal with this symptom so far so I'm not sure how to approach this.

 

Any advice would be helpful!

[Joan Pandas Mom]

I think tics can come and go. When all this started my son was 9, he had slight tics with it that at times would leave for months.

[airial95]

Thanks,

 

I just feel like I'm a crazy person sometimes, looking for symptoms that may or may not be there! At least I'm not that crazy then!

[norcalmom]

yes, it could be a tic. when my son started ticing he nver did it at school, he was occassionally doing it at home - asked the teachers and they said no, I think they thought I was paranoid. He told us he was getting his hair out of his eyes. We cut his hair. Then one day I saw him at recess at school. It was out of control. And at baseball, crazy. So I guess what I'm saying is yes - they can start off slow (mild) and they can be situational. Some kids go crazy whent hey get home from school. they can surpress it for a while, but then need to get it out. I doubt a 2 1/2 year old would have that filter though. (my son was 10 when started).

 

He has milder tics now, and sometimes he only does it a few times in the morning. Sometimes he has none. He usually gets them just before getting a virus. I'd say 3-7 days before, like he is exposed and fighting the virus, and once the virus takes hold the tic dissappears. First couple times were major exacerbations, so alot more than tics involved and I wasn't tracking minor colds at the time. I think he got those after illnesses, and they lasted for months. That was before we got him on abx.

 

Your child is really little, so hard to tell, but you will know if it transitions from mild. In interum, I'd check for strep. Does your child have a pnadas diagnosis already? 20% of all little kids have a mild tic of some kind at any given point. So I wouldn't worry about it unless already pandas and adding new symptom, or tic becomes severe.

[cfrei]

My 2 1/2 yr old PANDAS son has dealt primarily with OCD, ADHD, and ODD during his journey so far. We've been very lucky that we haven't had to deal with the tic aspect of it - yet.

 

I say yet, because I've been noticing something, but i'm not sure if you would identify it as a tic or just something weird 2 year olds do. (a common question in our family!) He shuts his eyes very tightly and moves his head to the side. It's like a blink - but longer, but not quite a grimace. I'd compare it to the type of face one would make if they were swallowing something unpleasant - but far less animated.

 

I noticed it for the first time in church last week, and he was having a bad morning, with sound hypersensitivity and ADHD off the charts. I kept an eye on it, and notcied it stopped about an hour or so after church. I made a mental note to keep an eye on him, but also thought he may have been continuing to do it since he knew it was getting my attention.

 

I've kept an eye on him all week - I didn't ask the teachers to specifically look out for that last week, because I wanted an objective opinion of it, and they always report new behaviors. This is obvious enough that if was doing it at school they'd report it. He was fine (although "fine" is a relative term with PANDAS).

 

On Saturday morning, we went to an exercise class and then the park with his sister, and I noticed him doing it again in the stroller during the walking class. He continued to do it at the park (but not as often), and by the time we stopped for lunch it stopped. He had a great day at the class and park, with only a little anxiety about the bouncy house (he loves them, but for some reason it was "wrong" that day.)

 

On Sunday morning, it reappered again at a birthday party, but only a few times and then nothing. He was suprisingly well behaved at the party too - although a little OCD constantly picking up toys after the other children (but happily! He didn't get angry when they pulled the toys back out - just went along behind them picking them up again.)

 

It doesn't happen in rapid succession, once a minute would probably be an eggagerated description. But it's often enough that it has gotten our attention.

 

What's odd to me is that it only has happened these 3 times, in the morning, and it stops. Is this normal for a tic? Can it come and go like that or is this just something quirky (our daughter did this when she was about 20 months or so - my husband was convinced she was having some sort of seizure - sure enough, she was just doing it because it got daddy's attention. The first time he didn't react to it was the last time it happened!) I've been careful not to make too big of a notice of it, in case it is just attention related.

 

But I thought that tics were more persistent - didn't come and go like that. All three times it happened we were out of the house, could that be a factor?

 

We've not had to deal with this symptom so far so I'm not sure how to approach this.

 

Any advice would be helpful!

 

My daughter's first tic was an eye tic at three years old, so its possible it is a tic. At the same time, like someone else said, most kids get a tic and most of the time, they just outgrow them and they go away. If your son has PANDAS however, it could mean that his immune system has been triggered in some way - either by strep or some infection. If you aren't keeping a journal, I highly recommend doing so. I find it very helpful to try to keep track of all of this. I've been keeping one for years for my daughter, not only her symptoms, but now what medications she is taking, when she gets sick, when she "relapses" etc. Hope this helps...

[airial95]

Thanks for the input. My son does have a PANDAS diagnosis. We actually have a great pediatrician incovlved that was the one to recognize it. He deals mostly with the OCD, ADHD and ODD - so we've escaped any ticcing - thus far. He's been on abx for just about 4 months now, and the results have been very promising. WE still deal mostly with the OCD - and of course some days are better than others. But I started a log on his behaviors/symptoms about 3 weeks after he started the abx (I wish I had thought of it sooner!!) We even have the teachers at school tracking things for us. IT's really helped us see how he's progressing.

 

This blinking thing has been new though, and it seems like it happens when he's already anxious about something (new situation, too many people, etc...) It sounds to me like that might have something to do with it.

 

With him being so young, it has been hard to seperate what's PANDAS and what's not. We've actually got him back to a point where most people would just find him a challenging, tempermental but normal child. However, we still remember the little boy we had 6 months ago, and his temperment hasn't fully recovered yet. But we're getting there!! I just feel like I'm looking for sypmtoms everywhere, even where there may be none!

 

Thanks!

[norcalmom]

You're lucky you caught it early. You are doing everything you can - it's maddening enough to be the parent of a "terrible" two. My ds had tantrums until he vomited, and yelled so long and loud he would loose his voice (we took him in - he had nodules on his vocal cords from it). I honestly don't know if that was pandas behavior or not, I think not. I think he's was just stubborn. Hard to tell what is "normal" toddler and what is not, because they do change pretty quickly. My non-pandas daughter had a long (ritualistic) bedtime routine, and would go around picking up stuff and putting away - like mommy's little helper. Completely normal. I didn't know anything about pandas then, and although some of her habits were annoying, they didn't set off alarm bells in my head. Now I would probably read all kinds of things into her behaviors. I guess ignorance is bliss in a way.

Trust your gut, and try to relax (I wish I could follow my own advice!!).

[airial95]

I know what you mean about not knowing what's "normal" for a 2 yr old b/c so many PANDAS symptoms are common for that stage of development.

 

We went through about 4-5 long months of thinking it was just the "terrible twos" before we even thought of something else. And even though I suspected something, my husband thought I was nuts. It was when day care (who's had him since he was 12 weeks old) called us one day mid-rage and very bluntly said - "this is not your kid. We don't know what's going on, but this is definately not the kid we've had the last 2 years". And we were back in the pediatrician the next day.

 

Our pediatrican was fantastic, he's treated several cases already and identified it immediately - even with a negative throat culture. Ironically, at that appointment, our son was out of his mind raging, and the nurse, even before the Dr. came in looked at us and said "Hmmm, I wonder if it could be PANDAS?" Of course, at that moment we had no idea what she was talking about. But it just goes to show how wonderful it is to have a good network of people around you who pay attention and care about your kids at school and the Dr's. We worried about going to a single dr practice - availiability, getting appointments, etc.. but it has been the biggest blessing, because he and all of his staff know my kids - really know my kids that even he was able to see a drastic change and not look at me like I was a complete loon.

 

Now - since the diagnosis, I know he looks at me like a complete loon because any sneeze, sniffle, anything with either of the kids and I'm on the phone/email or in is office in a heartbeat!