Tattoomom

I checked his eyes in direct sunlight and his pupils got smaller. But then they go back to this size or a tad larger when indoors. When your kids pupils are large, are they large even in bright light?

With all the talk about dilated pupils being a sign of PANDAS, it really hit me... my ds's pupils are always big! Sometimes they're HUGE and cover up his iris. I took this pic of him today. I'd say this is about as small as they get unless he's in direct sunlight and then they constrict. Do you think his eyes look dilated? Or is this normal? P.S. Doesn't he have the prettiest baby blues? His eyes are like crystals!

Well, I definitely think my ds has food issues so that may be contributing. And I cannot tell you how many times I've asked the doctors about the possible connection and gotten the reply "That's all anecdotal, there's never been a study to prove it." Argh....

http://www.latitudes.org/forums/index.php?showtopic=6314

Oh WOW! Never knew that... My ds has dilated eyes a lot!

So, if you find that for instance, gluten causes your child to tic, and you remove it from their diet and the tics stop, what does that mean?! Is it still TS? Or just a symptom of a food allergy? The reason I ask is because we're pretty sure gluten affects our son, at least in some way shape or form. Not sure about dairy but we're going to do an elimination diet with just gluten for now and see how it goes. We've done both gf/cf before and he did extremely well, no tics at all while on the diet, but I'd like to play with it and see if one more than the other helps. I'd love to do that CAM kinase test but someone posted that it's $400!

No, we haven't. He had a negative rapid strep test last week, but no titers have been done since 07.

We had him tested for strep roughly 3 months after his symptoms started. He was 5 when it started and he's 8 now.

My son was diagnosed with PANDAS and Tourettes. Even though he only has tics during exacerbation. Can they not be diagnosed with both? This is the way his Neurologist explained this to us: As long as he fits the criteria (even if the tics are a PANDAS symptoms) his diagnosis will still be Tourettes as well as PANDAS. My sons diagnosis from Neurologist is PANDAS, Tourettes, and OCD - since he meets the criteria for all 3 (even though OCD and tics are ONLY present during PANDAS exacerbation). TSA criteria for Tourettes Syndrome: 1.Both multiple motor and one or more vocal tics present at some time during the illness although not necessarily simultaneously; 2.The occurrence of tics many times a day (usually in bouts) nearly every day or intermittently throughout a span of more than one year; and 3.Periodic changes in the number, frequency, type and location of the tics, and waxing and waning of their severity. Symptoms can sometimes disappear for weeks or months at a time. 4.Onset before the age of 18. I've never heard of being diagnosed with both? As for the list above from TSA, my son definitely fits the bill, especially since it says it can disappear for months at a time. I read somewhere though, that the cut-off was 3 months?

My ds just started doing this, too. It's mild but it's there. Is this a symptom of PANDAS?

Right. I couldn't agree more! I just don't know what to do. We are 3 years into on again and off again ticcing. He was tic free over 6 months and now they're back. I'm just not sure I feel comfortable "assuming" it's TS or transient childhood tics. I feel like we should rule out PANDAS but our Ped. feels we already have with a neg. throat swab and negative ASO and DNASE-B back in 2007. What happens to the PANDAS kids who are incorrectly diagnosed TS? The next time your child has an exacerbation, see if you can do a trial of abx. What we noticed with my daughter (who had +rapid strep tests, but was dismissed by specialists as "just" a carrier), was that symptoms improved on antibotics and I knew to bring her in for a strep test just by behavior. Does your child only tic, or are there other symptoms? He has anxiety and will go through spurts of RAGING tantrums, where he cries and freaks out over everything. Oddly, he seems to bust out in tics several days following the start of his behavioral fits. And then there are times where he just tics. Nothing else. In hindsight, when his tics first started, he was also urinating constantly, to where I took him to the Ped. concerned it might be diabetes (that runs in my family) and I had no idea that was a symptom of PANDAS. He doesn't do it anymore, it was only in the beginning. As for OCD's, he has them but I'd say they are mild. It's weird because he complains of a sore throat a lot but when I take him in, his rapid strep is always negative, as are the cultures.

Nope. No diagnosis. I just don't know what to do. We are 3 years into on again and off again ticcing. He was tic free over 6 months and now they're back. I'm just not sure I feel comfortable "assuming" it's TS or transient childhood tics. I feel like we should rule out PANDAS but our Ped. feels we already have with a neg. throat swab and negative ASO and DNASE-B back in 2007. I guess I just worry that it might be PANDAS and we are ignoring it! By we, I mean the doctors!! What are some other reasons for the tics?

I would like to know the answer to this question, too!

Is this test an out-of-pocket expense?

Right. I couldn't agree more! I just don't know what to do. We are 3 years into on again and off again ticcing. He was tic free over 6 months and now they're back. I'm just not sure I feel comfortable "assuming" it's TS or transient childhood tics. I feel like we should rule out PANDAS but our Ped. feels we already have with a neg. throat swab and negative ASO and DNASE-B back in 2007. What happens to the PANDAS kids who are incorrectly diagnosed TS?

Really? Because I am in such a confused state right now. I personally think my ds would fall under the TS category more so than PANDAS, however, we have no confirmed family history of TS and his tics did start co-in-siding with an illness (not conformed strep) And I have to wonder.... does it matter if it is PANDAS but chalked up to TS? Is there harm in not finding out for sure and treating it?

Do you think children are incorrectly diagnosed with Tourette's when it's really PANDAS or vice versa?

Do you think children are incorrectly diagnosed with PANDAS when it's really Tourette's or vice versa?

Amen, sister!

Well said...I completely agree.

That cracked me up!

Thanks Chemar! The more I read, the more I think my ds might have TS. And although we've dealt with tics on and off for 3 years now, he's never went a year ticcing... he always takes a long break!

Vickie! LOL!! Your husband would fit in around here! And sounds like your son's would play wonderfully We just took ds to a psychiatrist last week and he was evaluated. The psy. definitely picked up on his anxiety and prescribed a low dose of Zoloft. We started it just to see if it helps. Anxiety runs in our blood. Our son is very, very mature for his age, in looks and behavior. He's only 8 but you can carry on a conversation with him like an adult. He's very intelligent. Just quirky!

Wendy, I'm new here... can you explain to me what CaM Kinase is? My ds had a negative throat culture and negative titers; ASO 7 Dnase B- <60 But has moderate tics, anxiety and some OCD. No family history of TS or tics.

No, he never asks me to re-enact anything and I normally only have to ask him once or twice to drop the topic and he does but it always re-surfaces. Spidey is definitely a favorite. Like right now, he's wanting a certain green goblin toy for Xmas and he gets online and searches for the toy and who has it for sale and how much it costs! He just seems to think about it constantly.