Tattoomom

So, I emailed Dr. Cunningham about the testing and here was her reply... Dear Parent We are happy to include your child in the PANDAS study. We measure the levels of antibodies against the neural antigens lysoganglioside, tubulin and dopamine receptors D1 and D2. Antibodies against these neural antigens may be elevated in the blood of children suspected of PANDAS, Tourette’s Syndrome or Sydenham chorea. We also test for activation of CaM Kinase in neuronal cells in culture. Antibodies may induce increased signaling of neuronal cells and cause release of too much dopamine in the brain. These tests suggest that your child might have one of these diseases but the tests are not FDA approved. The part I'm not really understanding is "Antibodies against these neural antigens may be elevated in the blood of children suspected of PANDAS, Tourette’s Syndrome or Sydenham chorea." I don't know, I guess I'm just trying to find a major reason to spend $400 on the test if all it's going to do is tell me that if his levels are high, my child might have PANDAS or TS? Aren't his symptoms enough proof?

Got a lab slip faxed to me today... CBC W/Diff ASO DNASE Sed Rate CR-P Total IGG IGG Subclasses The Pediatrician offered a 14 day trail of Penicillin... not the drug of choice I should try to get Zith or Augmentin right? Is 14 days enough?

Yes, I was posting a lot back in 2007 as well. What's weird about my son is it seems like illness brings out a burst in tics but the tics don't go away with the illness. It's like they linger and change and linger and change. And then they just go away completely until the next episode.

Faith, I don't have any answers, I just wanted to say that I completely understand your confusion and frustration. I feel the same way as you a lot of the time and our son's present in a very similiar fashion. Hopefully we will both find what works for our boys. Until then, just know that you're definitely not alone. Tricia

Not that he remembers.... he was probably undiagnosed ADHD/OCD. Unfortunately, his mother is an alcoholic and was intoxicated during his childhood so she doesn't remember a thing. You'd think he'd remember ticcing, though?

What labs should I request the Pediatrician do? ASO & DNASE again? IgG Subclasses? Anything else???

I have to wonder myself if my son has TS and I'm chasing a PANDAS diagnosis for no good reason... I guess that's what prompted me to start this thread a few weeks ago--- http://www.latitudes.org/forums/index.php?showtopic=6310 http://www.latitudes.org/forums/index.php?showtopic=6309 Personally, to me, it seems like parents of kids who tic are suspecting PANDAS over TS. Wonder why that is? Is PANDAS more common than TS? Or is it that PANDAS is more treatable per se, so they feel the need to diagnose or eliminate it. I guess that's how I'm feeling at the moment.

Thank you Vickie! I needed to hear that

I'm not really sure how Dr. K. got "Aspergers traits" from an email, but I know 100% that he does not have Aspergers! It's not even a question or worry in my mind. I'd love to drive down to Tampa to see Dr. Murphy but I don't know if or when that could happen? I'm seriously considering the CamK testing...

I ended up emailing Dr. K Here's my letter and his response. Our ds has always been a spirited child. We went through terrible 1, 2's, 3's & 4's with him. He was highly aggressive as a toddler (hitting, crying, tantrums) yet highly sensitive (hated tags in his shirt, loud noises, crowds, new places) He seemed to outgrow a lot of these issues with time. And then came the tics around age 5 1/2. He had a throat-clearing tic that lasted from Dec 06-Feb 07. He was very sick at the time it started, with a cold/cough, and we thought it was just from being sick. He then added eye blinking. The eye blinking was way worse than the throat-clearing ever was. He started out blinking all.day.long. He had strep titers done back in 2007 when he had his first explosion of tics and was negative. (ASO was 7 DNASE-B was <60) He's waxed and waned, and even been completely tic free for 6 months at a time but then they seem to come back, usually during/after an illness. He developed a new eye roll tic in September, had Swine Flu in October and took Amoxicillan during the H1N1 for an ear infection. Ever since, he's started throat clearing and blinking again but added some new tics like finger flicking/touching finger tips (looks like he's trying to flick something off his finger), neck tic (looks like he's trying to crack his neck/stretch), he wipes his hands on his pants or the couch constantly and he just appears to be very nervous and fidgety. We have no confirmed family history of TS. We do have a whole lot of autoimmune disorders, ADHD, Anxiety, & Depression. We took him to the Ped. last week when his younger sister had a fever & sore throat and they both tested negative on rapid strep test. Should I pursue anything? I guess I just look at the body as a whole and feel like we should seek out the reason this is happening. Will it hurt him to just let it go and chalk it up to tics/TS if it possibly could be PANDAS? Does this sound more like TS than PANDAS? We just started him in therapy last week for the anxiety he has. The Psychiatrist put him on a low dose of Zoloft. Thank you for your time, Tricia Solely on the basis of your description it is not likely to be a classic Tourette's syndrome. It is much more likely to be PANDAS. He does appear to have what I call "Asperger's traits", his symptoms have exhibited clear wax-and-wane pattern, etc. You may want to pursue this diagnosis and see if anything comes out of it. Hope this helps. Sincere regards, dr. K

Thank you all so much!!! Reading your replies sure gave me a sense of stability and confidence! I appreciate each and every one of you who replied and especially to those of you who shared your own stories of similarity. It means a lot to me that I'm not alone in this. Especially since today my bubble was popped yet again..... We had our second visit with the Psychiatrist who put ds on Zoloft. After a few moments of chatting, I asked him if he knew about PANDAS. At first, I was pleasantly surprised when he ratted off that he knew Dr. Murphy when she was at UF, and he said he's been trained to recognize PANDAS. So, we were off to a good start until he said, "Your son does not fit PANDAS criteria." He said PANDAS is sudden onset of crippling, debilitating, OCD & tics and that those children cannot function. He said over night, parents lose their children to PANDAS. Our ds has clearly had issues for several years leading up to his tic explosion so he said there's no way it would be PANDAS. He rated our son's tic's "Moderate" and said if we'd like, we can try some medication to supress the tics to go along with the Zoloft for anxiety/OCD. He said from listening to us talk about his history, he thinks the rages/fits are more "behavioral problems" that we need to deal with. I left there totally deflated.....

The Pediatrician. And this was back in 2007!!

Ajcire, I could hug you through the internet!! I really needed to hear that... thank u sooo much for sharing your story! It makes me feel so much better to know that I'm not alone. This is especially hard on me especially because my dh and I are very close and we typically get along very well and agree on most things and we butt heads on this. I think we need to order the CamK test. He's supportive of it, I just worry it'll add more stress because it's expensive and we're really struggling financially right now. On top of it maybe not offering any answers...

Suzan, You completely nailed it! I'm pretty sure I said that exact same thing to him in one of our many debates. And what kills me even MORE is that we have 3 kids, ds is the oldest (8) and our middle child is (6) and she is polar opposite (3rd is still a baby)... you'd think he'd notice that our middle child is not ticcing, freaking out at the drop of a hat, she's not on Zoloft, not in therapy, etc..... I tried to point out that those are red flags, yet he still brushed it off. AND.... he tried to say that everyone has some sort of OCD or issue, no one is perfect. And he thought the list of symptoms of PANDAS sounded to broad, like too many children fit the bill. Yet, we have a 6 year old daughter who is not any of those things!!! It took me years to get him to agree to therapy for ds. I don't know why he's in such denial. On the flip side, he makes me think I'm chock-full-of-nuts! Thanks for understanding...

So, I really pleaded with my husband today to read some of the websites I've bookmarked and some of the pages here I've posted. After several attempts of begging, he complied, but not happily. Basically, he doesn't "see" ds's issues. I mean... he see's them but he doesn't "see" the problem in them. We haven't had a fit/rage in a few weeks, so things seem to have waned for now. He says "The tics do no harm. He's not handicapped, he still functions." He feels like the therapist and Zoloft are helping the anxiety. So he sees no reason to dig for a diagnosis of PANDAS or TS. I feel so alone in this. My husband makes me feel like I'm the one with the problem because I'm the only one who wants to get our son help. I'll admit, ds's issues are mild and not near as severe as some of you have it. But they're there. Mild or not, he tics and has OCD/Anxiety/Tantrums. My dh does not think it's PANDAS or TS. He thinks one day it'll all go away and he can say "I told you so." Of course, part of me hopes he's right! But realistically, what can I do? If I pursue PANDAS, I'm pretty much in this alone. And I guess part of me wonders if he's right?

Of course, that could be a possibility! I think I really need to do the CamK test....

This is EXACTLY how our ds is! After his fit, he apologizes to us profusely and talks about what a bad person he is but swears that he just can't help it.

YES!! Our son (8 years old) has these spells wayy too often He just started on Zoloft (25 mg) and ironically, he hasn't had a "freak out" in a few weeks. Not sure if it's just a waning period or if the Zoloft is helping?

What is the difference between TS and PANDAS "symptoms?" Aren't they very much the same? I too, struggle to understand if my son's issues are PANDAS or TS...

Dumb question, but what is PEX??

I have an appointment for just me to discuss PANDAS with our Pediatrician. I really want to go in there armed with information, especially since she solely relies on strep cultures & titers for diagnosis, and his are negative. Can you guys help me get prepared for this?!

Yes, exactly. The lack of documented strep infections + low titers makes me think it's more possibly TS. And, well, the Pediatrician doesn't help since she's convinced it's not PANDAS! As for shots... he was always super-reactive to his vaccinations and since we're homeschoolers, I didn't do his booster shots for MMR or Varicella. He did have a Polio booster at his 5 year well-check in March of 2006. His first tic was in December of 2006.

I've heard several times from different Pediatricians that babies under 2 years old usually don't get strep. Is that true?!

Yes, to that!

We put ds on a gluten free/casein free diet back in 2007 and he was on it faithfully until September 2008. During this time, he had very few tic episodes. His behavior/anxiety/OCD were the same. It's hard for me to contribute the decline in tics to the diet since he was completely tic free from Feb-Aug 08, eating whatever he wanted. I have noticed the Wii brings out his tics but only if he's already in tic mode. If he's in a tic free spell, it won't. It's crazy... I'm sure he's sensitive to environmental allergens, as am I. I try to keep our house as chemical free as possible and we try to eat as clean as possible. What have you noticed as a trigger?