Tourettes Uncovered

[JaylensMom]

Jaylen's mom,

 

I hope you didn't take my post the wrong way. Of course many of us on here wondered if the parents checked for infection. For those of us dealing with PANDAS it's a natrual question, and one that the show didn't touch upon. Many of us on here have dealt with doctors/neurologists that were adamant that our children didn't have PANDAS, when in truth, they did - so I hope you weren't offended by the question.

No one was questioning your approach/path to dealing with his condition.

 

 

As for my remark about the ratings - in no way did I mean to imply that anything was staged for the show for ratings. I was responding to people's remarks as to why they would choose such seemingly "extreme" cases to highlight. Even though medically they are not all seen as extreme (as the teenager only has one tic, but also the rage issues) - the behaviors they exhibit are very noticable. My sons tics are very mild, and unless you are familiar with them, can go unnoticed by strangers. Someone like him would not have made for "good tv" to the producers of the show. It was a reflection of the producers and what they were looking for in cases to highlight than it was a disparagement on any of the families.

 

I commend you for all that you've done for your son, and being from Tampa, I have followed his campaign when he's been highlighted in the local papers and on the local news. My son is still a bit young to understand what is going on, and hasn't had to deal with bullying yet, but I have already saved Jaylen's page to our computer to show him when he's old enough to understand.

 

All of us on here are trying to do the best we can for our children, and to help other children like them - just like you and Jaylen. As others have said, we would love to have you come back and join us here, as we have many parents who are unsure if they are dealing with true TS or PANDAS. Your point of view would be invaluable and welcome.

 

 

 

Thank you so much for your clarification and warmness. Yes, everyday is one day at a time. If we can help another, we are so happy to oblige. Thanks for the Love and for supporting our endeavor to educate. xo

[JaylensMom]

Hello!

It's rather outrageous to assume I was "bashing" anyone. I certainly appreciate all the natural methods you used on your son, your approach is sound. My son has been mostly non responsive to antibiotics. I certainly agree most if not all medication does ZERO for tics and is not worth it.

 

But it is NOT outrageous to assume that for public education reasons and for just plain naivete, that parents would not be familiar with PANDAS and that doctors would not even bring it up. Even some place like Duke. There are people who know PANDAS in the medical field and there are the rest of them. Only in recent years and I mean VERY recent years, thanks in part to people here, has PANDAS even entered vocabularies in so called sophisticated urban areas. One of the top neuropsychs in my area when I mentioned PANDAS had to think about what condition that was and its symptoms. It's not exactly high priority in these circles and that's what this forum is a bout.

As Nevergiveup said, no strep titers and a healthy immune system do not mean no PANDAS. It sounds like except for the tics, your son is fortunate to not suffer from comorbid conditions. Most of us on this forum would LOVE that to be the case.

I would like to see my son's tics "wax and wane". The vocal ones have been around so long I was too stupid to acknowledge their existence and I consider myself educated and aware. I just thought he was being silly. What did I know?

 

When I watched the Tourette's tape, I wanted them all to get the children help somehow but I didn't see anyone say, we checked for PANDAS. Why? BEcause Mystery Diagnosis which just did PANDAS didn't point them in that direction. Or the parents' doctors didn't point them. I know it's not what the show was about, but it made me wonder if deep brain surgery on that other child could have been averted. COULD have been. You say "The young man Jonah is tic free" No he isn't, he is 90 percent improved. And how often will he go in to have his voltage checked? His fight/flight responses reminded me of Saving Sammy. Did they try high dose antibiotics?

 

I question any doctor who diagnoses Tourette's in a child of 3, frankly, they could just as easily diagnose PANDAS in a three-year old. Not very common and it's just as easy to diagnose a three year old with schizophrenia or bipolar disorder. My son's shrink suspects the tics are just Tourette's (just Tourette's, can you imagine?) but I don't buy it, I say PANDAS and so do Cunningham tests.

 

I'm sorry if I ticced you off. (ok, bad pun) But in the end, I echo what Nevergiveup said in her post to you. Keep up the good work, wish more parents knew what to do.

 

 

 

I hear what you are saying, but many of our children have been checked...they just didn't mention it. Jonah from the story is now "tic free" due to the surgery. In the story, his last update was just one month post surgery (when he was 90% - that was June). However, he is tic free due to being controlled by the electrodes. If the equipment were turned off, tics would ocme back. I find it odd that your son has had vocal ticcing for a very long time, how long is that? My neurologist is very pro PANDAS (she is not from this country though and thus not mainstream). Most of the children I know with PANDAS, the tics come and go as in they don't wax and wane, but they literally start and stop for periods of time. As in completely stop for a good while and then start up again at an illness onset, etc.. We don't get that with TS..they never stop. Even into adulthood when they wane down alot, they actually never stop. If they do...I think they were PANDAS misdiagnosed. With true TS, they never totally stop, the adult just learns how to mask them better and of course everyone know post puberty they lessen.

 

My son (due to our Neuro being very thorough and well educated) had received high doses of antibiotics and nothing changed. We now see a holistic nutritionist as well and try to deal with gluten, wheat, etc... Heck I've tried everything!

[JaylensMom]

Jaylen's Mom,

 

I just wanted to say that I watched the show (even though I said I wouldn't ) ..and the end with your son saying how things are going to get better and "backfire".......and to "trust him" with a big smile absolutely brought tears to my eyes. That was such a strong, encouraging statement from a brave, adorable little boy!

 

 

I did also read your post and I must say that one thing jumped out at me pretty quickly as a red flag. Now, PLEASE, I am NOT saying your child has PANDAS......I am just presenting something. I have no doubt you have done and looked into everything you can possibly come up with...however, the members on this forum are also right....PANDAS is not well known and many docs can give you wrong info. and dismiss PANDAS on findings that are not diagnostic of PANDAS (strep titers, etc). So many kids get overlooked that have PANDAS based on absent strep titers...it is a shame! We have to knock down doors and search under every crack for help/answers to PANDAS. Unfortunately! Anyway, when you said your son is "NEVER" sick...well, it is when a parent of a child with TS/tics says this that, in my mind, a red flag appears. It is impossible for a child to never get sick ( and, I am sure you were exaggerating a bit) but, if he is out and about in the world, he does indeed get sick and exposed to all kinds of stuff daily. What we are finding out is that a child's symptoms of illness with this disorder can be tics and behavior changes...that is it...no typical physical signs what-so-ever. As Dr. k stated....."look for the tics, behavior changes...that is your child saying they are sick." A great immune system can also mean an over-reactive system. There have been numerous times my sons presented with an increase in tics/behaviors when kids around them were ill....sometimes it took a bit for us to find the culprit, but, there was always one found somehwere. My sons would usually NOT show any signs of illness...EXCEPT for the tics/behaviors. I could say my kids "never" get sick, too...but they do....their response is just different. Also, interesting you say your child's tics increase dramatically with strep/exposure. (definition of PANDAS)

 

Just something to think about. You never know! This is a PANDAS forum so you are gonna get a lot of feedback regarding PANDAS! It is engrained in our DNA now! We can't help it!

 

Has your son ever had any immune-modulating treatments? I am assuming he has had an immune work-up?

 

Anyway...thanks for sharing your story....you got one brave boy!

 

Kelly

 

 

Hi Kelly:

I didn't mean that Jaylen's tics increase dramatically with strep/exposure personally. What I was referring to is that our doctor (who is well versed in PANDAS) has me always on my toes about it. She states that Strep "can" increase the tics into exacerbation so we are very cautious if he is near anyone with strept (although he has never had it). If at anytime he is ever around someone who is strep positive, we put him on antibiotics immediately.

 

Yes, Jaylen does get sick, but really...not sick sick like my daughter. If he's exposed to something he gets a very mild fever for a day and then he is done. He never gets that nasty cough, stuffy nose, stomach viruses...not really anything (and he constantly has his hands in his mouth due to a certain tic). I put that on his many many vaccines as a baby. Jaylen was born premature and had way more vaccines than usual (yes, I've thought about the vaccines as being the culprit of high mercury and causing TS (broad spectrum autism as he also has Asperger's and severe OCD)); however, for his first 2 years of life, he lived them in and out of the hospital, constantly sick. They pumped him full of vaccines and he hasn't really been sick since. His asthma even disappeared!

 

I do pay attention to his ticcing (I'm very in tune with his body) and I even keep track of their rhythms and cycles. They are so predictable that I can tell you now (after 8 years of it) exactly when it will exacerbate - I just can not tell you what new tics will come. This is of course without any outside stressor. Unexpected stressors in his life (being bullied) can and will cause an exacerbation all on its own.

 

Thank you for your kind words about Jaylen. Although he has his multitudes of disorders, I do try and protect him and keep his image of himself on the upswing. I do have a happy boy most of the time. He realizes that he must help others and it was his idea to do so.

 

Thanks,

Robin

Edited September 17, 2010 by JaylensMom

[JaylensMom]

Jaylen's Mom,

 

I just wanted to say that I watched the show (even though I said I wouldn't ) ..and the end with your son saying how things are going to get better and "backfire".......and to "trust him" with a big smile absolutely brought tears to my eyes. That was such a strong, encouraging statement from a brave, adorable little boy!

 

 

I did also read your post and I must say that one thing jumped out at me pretty quickly as a red flag. Now, PLEASE, I am NOT saying your child has PANDAS......I am just presenting something. I have no doubt you have done and looked into everything you can possibly come up with...however, the members on this forum are also right....PANDAS is not well known and many docs can give you wrong info. and dismiss PANDAS on findings that are not diagnostic of PANDAS (strep titers, etc). So many kids get overlooked that have PANDAS based on absent strep titers...it is a shame! We have to knock down doors and search under every crack for help/answers to PANDAS. Unfortunately! Anyway, when you said your son is "NEVER" sick...well, it is when a parent of a child with TS/tics says this that, in my mind, a red flag appears. It is impossible for a child to never get sick ( and, I am sure you were exaggerating a bit) but, if he is out and about in the world, he does indeed get sick and exposed to all kinds of stuff daily. What we are finding out is that a child's symptoms of illness with this disorder can be tics and behavior changes...that is it...no typical physical signs what-so-ever. As Dr. k stated....."look for the tics, behavior changes...that is your child saying they are sick." A great immune system can also mean an over-reactive system. There have been numerous times my sons presented with an increase in tics/behaviors when kids around them were ill....sometimes it took a bit for us to find the culprit, but, there was always one found somehwere. My sons would usually NOT show any signs of illness...EXCEPT for the tics/behaviors. I could say my kids "never" get sick, too...but they do....their response is just different. Also, interesting you say your child's tics increase dramatically with strep/exposure. (definition of PANDAS)

 

Just something to think about. You never know! This is a PANDAS forum so you are gonna get a lot of feedback regarding PANDAS! It is engrained in our DNA now! We can't help it!

 

Has your son ever had any immune-modulating treatments? I am assuming he has had an immune work-up?

 

Anyway...thanks for sharing your story....you got one brave boy!

 

Kelly

Edited September 17, 2010 by JaylensMom

[JaylensMom]

I typed out something HUGE & then it erased.

 

Good Lord, this poor woman is going to think we P.A.N.D.A.S. people are crazy. JaylensMom, if you don't think that your son's problem is P.A.N.D.A.S. or PITAND related... Then who are we to tell you otherwise?! I think that sometimes we get so caught up talking about symptoms & treatment that we often neglect to take into account the underlying cause... INFECTION. In a child with no history of infection, why would P.A.N.D.A.S. be logical?? I understand that a lack of infection does NOT rule P.A.N.D.A.S. out, but if he's operating within the Tourette's diagnosi & you have already ruled out P.A.N.D.A.S., then why would you be expected to go further down that road?? I think that some of us, including myself - misdiagnosed with Tourette's at eleven years old (& that's only the tip of the iceberg), have been made paranoid by our bad experiences with doctors. & trust me, I do not mean that negatively at all because with what some of us have gone through with doctors, teachers, insurance companies, & everything else.. We do have every reason to be a little paranoid about people being misinformed!! But with almost a decade of experience, I imagine that you are just as (if not more) well versed in Tourette's than most of us are in P.A.N.D.A.S. You don't get on the Discovery Health Channel without connections, people. So, all I'm saying is, if you have reason to believe that your son does not have P.A.N.D.A.S., good for you. "Good for you" always comes out sounding malicious or sarcastic, but I really mean it. None of us know him & can't say what it is, but we are all quick to pull the "P.A.N.D.A.S. trigger" when watching shows like this. I know even I do sometimes. No matter what it is that your son has, Thank you for being another brave Mom fighting for her kid & I hope that the both of you are doing well! <3

 

 

You are such a wise 15 year old! You need to become a doctor and find cures for all of our kids whether it's PANDAS, Tourette, ASP, or Auties! (And as one person said, this is a Pandas forum, but I only came over here because someone told me you all were afraid to watch the show). How can a bunch of crazy PANDAS moms be afraid to watch a show about TS? Especially when we are even crazier? ;o)

[matis_mom]

I liked the way they showed a variety of symptoms in each of the children. What scared me, since we are still bouncing between the two diagnosis, is that so many of the parents said "it started with eye blinking at age 7". This is what the doctor at CHOP was telling me, what we are likely to be facing Very very scary and I also had trouble sleeping last night.

 

I don't think it was a bad thing that they showed kids that were so severe. That's the way it goes. Not to sound like a pot stirrer here, but what about Mystery Diagnosis? Wouldn't Sammys case being shown be likely to lead others to think some of our kids can't have PANDAS if they aren't as severe as Sammy? He was surely a very severe case and the only one shown on that show.

DS also started with a tic about age 7, and he is definitely PANDAS, not Tourettes. Keep hope.

[pixiesmommy]

I have so much to say to this that it may take me several posts to get it all out, as it is getting late here.

 

First of all, I don't think there is a simple solution to PANDAS or Tourette's. The "benefit" of having a PANDAS diagnosis in a case like this (Jaylen's, as you describe, since I did not see the show-- we are TV-free...) is that if it IS PANDAS and abx or IVIG/PEX can help, then that is something of a "cure" or "treatment" that you may not otherwise have had access to, had you only had the Tourette's diagnosis.

 

Having said that (and hopefully still making sense...), let me tell you a little bit about my story. I am certainly NOT pro-PANDAS (as in pushing it down your throat!) so try to hear me out.

 

My daughter was a very healthy little girl. She didn't ever catch colds, etc in pre-school or even flu when family around her would be suffering. She was also completely vaxed (though full term, so not excessively vaxed.) She had her first fever at about 9 days old or so. I took her in to the dr and they told me it was a virus and not to worry. From that point on, she had sleep disturbances (at that age it translates to: never slept.) We would take shifts with her (my mom and I- I was a single parent at the time) and my mom is a nurse. She said she had never seen anything like it. It was like a switch was flipped, but we attributed it to colic, etc- because how do you know a child's personality has changed at that young of an age? But it certainly seemed like it!

 

She nursed until 3.5 years when she self-weaned. I tried to do things a "better" way and gave her soy milk instead of cow, etc. I tried to be very diligent in how I treated her health, and she seemed to be healthy. We would get flu and she would not get it. At preschool at ages 3 and 4, she would not get strep or flu, or hand/foot/mouth, etc. as it went around. Never so much as a sniffle hardly. She would get a tummy upset about once a year maybe. But weirdly enough, she would get FEVER for sometimes days on end and I got to where I could track them. March and September. The September one was the first to stand out because it always coincided with her birthday. I knew the other was in spring, but I had not specifically ever tracked that one until she started school, and then it coincided with spring break and was easier to remember. I know now that those are times when strep is most rampant.

 

She had a few cultures as she was getting fevers more frequently, around ages 4-5, but with NO other symptoms. I finally begged my pediatrician to refer us to an allergist. The allergist was baffled and referred us to an ENT, saying that she thought maybe the tonsils were harboring allergens. We removed her tonsils at age 5.5 and the ENT came storming out into the waiting room and accosted me for "not ever treating this child for strep! She had the most pitted, infected and scarred tonsils I have ever seen!" She had tested REPEATEDLY negative for strep- never come up positive once!- when they tested her for it in the ped office. They hardly ever tested because she had no sore throat and it was never red.

 

We got a short period of relief after the tonsils were removed that June. In September, instead of a long fever, she raged and started biting. I had changed our diet so that it was dye-free at this point because I thought the dyes were affecting her aggression. She got some relief, but it would wax and wane. She started sniffing and I thought that allergies must still be at the root of it after all (this was at age 6 to 6.5)

 

At around age 7 she started eye-blinking and would have some periods of bed-wetting that I thought were UTIs. Then about a week after the bed-wetting episodes, she would have a fever again and my new ped would test for strep and it would come up positive but only after she let it sit and culture overnight. The bed-wetting would wax and wane, but the sniffing and eye-blinking never did. She was prescribed allergy meds for the sniffing and eye-drops for the blinking, but it only worsened. By age 8, we knew the blinking was a tic. By 8.5, she developed a constant finger-flicking motion as well as kept the other tics. Sometimes she would have a day where the sniffing would disappear, but it was rare. She was diagnosed with Tourette's at this point (and her aggression had increased and she was put into an outpatient psych program for 11 days.)

 

We ruled out seizures with 3 neurologists. We had Asperger's testing done with a ped neuro-psychologist. We finally went on meds, not for the tics but for her depression, which was diagnosed as co-morbid to the Tourette's (along with ADD and SPD.) The meds did nothing to help. We changed meds (from Zoloft to Abilify) and the tics increased to the point of basically writhing. She had a head-toss/sniff/cough combo, a huge shoulder shrug, would hold her arms out strangely and sometimes flap her hands, finger-flicking on both hands, odd mouth movements, and of course the eye-blink (and now an eye-rub since it bothered her.)

 

She has rarely had a positive strep test unless it is a culture- and even then, it is hard to catch her with strep. She reacts with some knee pain now but usually just fever and ramping up of tics and some behavioral issues. She rarely has a sore throat or gets sick in that way. Her ASOs and Anti-Dnase B titers, mycoplasma, and Lyme tests (done with an infectious disease dr) all came back totally normal. (We still have to do the Igenex to rule out Lyme, but the standard testing was totally normal on all counts. According to medical science, this is a healthy child who "just" has Tourette's.

 

A year ago, in Sept of 09 when she was 9 yrs old, we finally decided that it MIGHT be PANDAS, though we were unsure. It looked like it was going to be something psychiatric in conjunction with Tourette's, but we had nothing to lose since she was at the point where we might have to institutionalize her for her aggression. She was diagnosed with a steroid burst and observation. We then did IVIG. Antibiotics are used as a prophylactic, but they do nothing to decrease her tics. She still gets strep (doesn't test positive, but again, tics and behaviors increase and the family will test positive!) Her only tic now is an occasional eye tic and finger flick. IVIG eliminated her big motor tics within 3 days!!!!

We keep her healthy by doing talk therapy, NRT, chiropractic, and a very strict diet and strict bedtime. We also have the 40 supplement thing going on at my house

 

I am not saying your DS has PANDAS- I have no idea; we are just finding our way. And KUDOS KUDOS KUDOS to you for going the natural path!!! Meds and the chemicals/toxins they contain are scary as heck! We have had extremely great results for our health, collectively, as a family through homeopathic remedies and dietary changes. My question for you, if you have read this far!, is have you done the steroid burst and seen a PANDAS expert to rule it out that way? IVIG was the best thing we ever did, and honestly we did not do it to address her tics at all! It was a side-benefit to us! Even if you doubt PANDAS (and I surely did, and we still do sometimes as we think... maybe it could be Lyme or this or that...), there are still some paths you could investigate.

 

I'm sorry this was so long-winded, but there was so much about your posts that jumped out at me and reminded me of my daughter. I would love to hear more of your story and do hope you will share with us. Regardless or whether they are the same or different, TS and PANDAS certainly do share similarities.

 

I also would love to hear more about the naturopathic things you do. Please visit the blog we keep on our diet (link in my signature.) I always love to learn more about diet and alternative methods of getting us healthier.

 

I'm also sorry you felt offended when you came here. I can tell you that I am absolutely sure it was no one's intention. I read the posts before I got to yours and didn't detect any "tone" that you may have mis-read. I completely understand (and I think I speak for all of us here) the defensive feeling you get when someone assumes you haven't covered all of your bases in taking care of your child! We get judged daily and bullied, even as adults. We ARE in this together, same diagnoses or not!

 

Many hugs to you for coming out publicly with your story

Manda