How do I know?

[Lisalou]

I feel like I've scoured this forum in an effort to find a simple answer. I've found a lot of great information, but I'm still left wondering about our specific situation. So, I decided to bite the bullet and sign up.

 

My ds is 9 and has facial tics. These started in May with a mouth-opening type of tic. After doing a lot of reading and finding that about 20% of kids will develop some type of tic that will eventually go away, I decided to let it ride. The tic began to change and I saw it move from the mouth opening to eye twitching. He would do both, sometimes one after the other and sometimes at separate times. He also began to cough a lot at random times....leading me to wonder if it was a vocal tic. We finally called the doctor.

 

I was wondering if the coughing was related more to allergies and not an actual tic. It didn't seem "tic-like." He's now on Claritin and I think the coughing is beginning to ease up. At the appointment, I was certain to point out that ds had been diagnosed with Strep in April (I believe?). He was having stomach issues (diagnosis: constipation) and while we were there, they tested for strep. It came back negative on the rapid test, but the cultured test was positive. He began a typical treatment of antibiotics and a month later the tics began. I was pleased when his doctor picked up on the strep/tic correlation and thus he ordered another strep test. He was put on antibiotics again after that appointment..."just in case."

 

I got the call today that his test came back positive again. He is not showing any strep symptoms but for the second time it's positive. After the 5 day antiobiotic treatment, I am not noticing a difference in the tics. The facial tics are the only issue. He does not appear to have trouble focusing, he does well in school, he'll read or play with his action figures for long periods of time. He also does not appear to have any OCD tendencies.

 

So....any thoughts on what this is? Do you think he's likely experiencing Transient Tic Disorder and it will eventually go away on its own? Could it be PANDAS when there are no other issues that I'm aware of? I do have anxiety disorder, which I know can be a factor with PANDAS. If it is PANDAS is it normal to show up a month after strep treatment? Could it possibly be TS when the facial tics are the only factor?

 

We're meeting with the doctor again on Monday to check in. I guess I am just looking for some thoughts from those of you who have such great insight and experience. I feel so much better when I can walk into an appointment with some insight.

 

Thanks in advance,

 

Lisa

[faith]

Hello Lisa, and welcome,

At this point, it really is too early to figure out what exactly is going on, and it does seem like there is no clear cut obvious thing jumping out. But you are on the right tracks, you'll just have to keep paying attention and see where it all goes. Interesting about the strep being positive despite no obvious symptoms, yet the tics were not decreased with antibiotic? which one was it? it may just not be the right one, some here who deal with the PANDAS issue have had to try several different antibiotics before one seemed to work. But again, you child has only had these tics for about three months, and it does sound like it came gradually, first the facial, then the cough? and no OCD symptoms? I wish I could give better advice, but you are doing a good job educating yourself on all the possibilities and the treatments that are advocated here. Best thing is to ask alot of questions. Maybe you could start by adding in some supplements, magnesium is always a good starting point and many here use a product called Natural Calm, you could google it and you could read about it. Also look at your child's diet and take out the obvious un-natural things, such as caffeine, aspartame, high fructose corn syrup, colors and dyes. Those small changes may make a big difference. Try to get your child's body healthier in as many ways as you can, and you may connect something to his symptoms.

 

good luck, and keep asking and reading.

 

Faith

[peglem]

You might try posting this on the PANDAS board as well. First and foremost, I'd be trying to find out why the strep keeps coming back- is it a problem of re-exposure, or is it never really going away and just re emerging. (is their an immune system problem?) It is not uncommon for PANDAS kids to have strep with only behavioral symptoms, and not show the classic signs of infection.

 

I'm not sure if you know all the little "extras" that come with PANDAS...things that are not diagnostic for it, but seem to be common among sufferers.

-changes in handwriting (messier)

-changes in emotional reactions: often exaggerated emotional responses relative to the triggering event

-sometimes OCD can be very subtle, it may look like he is just hyperfocussed on something

-new, or unreasonable fears

-problems sleeping

-sensory issues: bothered by lights, sounds, certain fabrics- or a combination of sensory stimuli causes "overload'

 

Most PANDAS parents can see (in hindsight) that there were little things in the past that were PANDAS sx, but not severe enough to cause the alarm that later led them to discover the PANDAS.

[Lisalou]

Thank you both for your insight. I feel bad saying this, but I'm not sure which antibiotic he was on. He's allergic to amoxycillan and I'm pretty sure it wasn't Zithromax, so that narrows it down a bit.

 

Everything sorta came to a head last night and I pretty much lost it. It's so difficult being a parent and trying to figure out what's going on with your child. You just want to fix it and make it all better....NOW.

 

Thanks for providing some more insight on PANDAS. As far as those other extras, here's our take:

 

-changes in handwriting (messier)---Not that I've noticed.

-changes in emotional reactions: often exaggerated emotional responses relative to the triggering event--No "changes" per se. He is "dramatic" in his responses to things, but this is definitely not a new thing. It's very common to here, "You NEVER listen to me..." stomp, stomp, whine. But since it isn't something that came on like the tics, I can assume he's just a little dramatic??

-sometimes OCD can be very subtle, it may look like he is just hyperfocussed on something-- I've been watching for something and I will continue to do so.

-new, or unreasonable fears-- No...a little too fearless at times.

-problems sleeping--Not problems, but he's a very dramatic sleeper---notice a pattern? Sleep walks and sleep talks, but he's done that since he could walk and talk.

-sensory issues: bothered by lights, sounds, certain fabrics- or a combination of sensory stimuli causes "overload'-- Nothing overly concerning here either. When younger, he would be a little sensitive to sound but he's grown out of it. With most kids, too much going, going, going during the day will likely cause some sort of a fit in the evening. Not always the case, though.

 

 

We meet on Monday with the doctor. I've got a lot of questions and I just hope he's open to communicating with me and hearing my concerns. We live in Wyoming and the resources here are definitely not abounding. He mentioned maybe wanting to try medication to control the tics but I'm not sure if I'm ready to go there quite yet.

 

Thanks again for your insight. I sure appreciate it.

 

Lisa

[nicholas]

Hi, our family path has followed a frustrating path the past two years. My son was diagnosed when he was 6 and we went through the normal medical model. After attending a Tourette conference in Dallas a light went on and I followed it. When my son was quite young- 3 years of age he had ongoing headaches when we went on car rides. We had him medically checked out and everything was fine. The headaches came and went, I thought it was my driving....motion sickness. During the conference it was mentioned that headaches can be a sign of Strep. We just had him tested through Great Plailns...allergy etc and also a test looking at Strep antibodies...he tested positive. We have also tested him for toxins and are waiting for the results. Parent's are the key...the medical profession has no clue and are unwilling to look for options. We have an appt with our family doctor tomorrow so that we can get a prescription to deal with the Strep. Our Naturopathic Doctor is quite helpful in our pursuit of my furthering my sons health. The signs previously mentioned were ongoing concerns. If you are looking for a good book to read....take a look at The Ultramind Solution by Mark Hyman, M.D.

Take care,

Nicholas

[dcmom]

Lisalou-

 

It is def true that kids get transient tics. But with the strep connection, i would consider that route first. It seems most pandas kids need a longer course of antibiotics to get things under control. There are MANY pandas symptoms, but many times the sentinal episode is milder. Would your doctor consider 20 to 30 days of a treatment dose of zithromax? The dr could give it to you in 10 day intervals. (It took my dd 20 days of zithromax to see a huge improvement in her pandas symptoms). This seems like a pretty simple first line type of intervention.

 

My daughter had ocd- no tics. Post on the pandas board to find out how long antibiotics took to help for kids with tics.

 

Best of luck!