Waxing & Waning

[thereishope]

And I'm thinking you are hesistant on PANDAS mainly because of the lack of a documented strep infection. Is that correct?

 

His tics came on around age 5 1/2. Was that shortly after kindergarten shots?

 

 

 

So, would you mind giving me a timeline again. At what age did you notice his first tics? Were they gradual and increased or was an explosion of tics out of nowhere? How would you describe your child when he was a baby or toddler?

 

 

Our son, now 8 years old, 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 in March of 2008. 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 March 2007, 3 months after he had his first explosion of tics and was negative. (ASO was 7 DNASE-B was <60) He saw a Pediatric Neurologist in April 2007 who said it was transient childhood tics/anxiety disorder and recommended counseling and said it may or may not end up being Tourette Syndrome.

 

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), shoulder tics, and he wipes his hands on his pants or the couch constantly and he just appears to be very nervous and fidgety. He constantly washes his hands but hates to dry them off. I've noticed him licking his hands this week... that is new.

 

We have no confirmed family history of TS. We do have a whole lot of autoimmune disorders, several blood disorders (his baby sister has an autoimmune-blood disorder), ADHD, Anxiety, & Depression.

[dut]

I guess I just wonder how my son could have tics/OCD and then go 6 months tic free and then BLOW UP with tics & OCD after the H1N1 virus. His anxiety is constantly there no matter what.

 

I just wondered if your PANDAS children ever took a "break" from symptoms?

 

Our dd went 7 months totally symptom free, then got PANDAS symptoms after a flu-like illness (that looked just like H1N1). Also your description of your son as a toddler fits our 2 year old ds whom we believe to be PANDAS, to a tee.. the highly spirited :-) very physical but sensitive to noise etc.

 

I personally believe that the vast majority of PANDAS kids don't have co-morbid conditions, it's all PANDAS. I think these kids get it way earlier than is commonly thought and that these early, unseen episodes can be milder but "inform" the child's personality. Our dd6's 1st noticed episode was at 4 nearly 5 but with hindsight there was stuff there as early as 2/3. Our son would have gone under the radar, so far, if it hadn't been for his sister's dx.

[Tattoomom]

And I'm thinking you are hesistant on PANDAS mainly because of the lack of a documented strep infection. Is that correct?

 

His tics came on around age 5 1/2. Was that shortly after kindergarten shots?

 

 

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.

[kcdc3]

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!

 

 

Is it possible that he may have had strep and you not have known it or taken him in to have him tested at some point? That is what our doc thinks may have happened with our daughter. She had what we believe to definitely be a strep infection a couple of weeks before this all started 3 years ago, but the strep test did not pick it up. Our doc said that strep tests miss 10%. This is all hind-sight. Looking back over the years, our dd probably had numerous strep episodes that were not diagnosed because she had frequent sore throats that I did not have diagnosed because I just attributed them to being viral and they went away. Her most recent strep came without any symptoms whatsoever and the culture was positive. Her Camk score was 163 - definitely in PANDAS range.

[Tattoomom]

Is it possible that he may have had strep and you not have known it or taken him in to have him tested at some point? That is what our doc thinks may have happened with our daughter. She had what we believe to definitely be a strep infection a couple of weeks before this all started 3 years ago, but the strep test did not pick it up. Our doc said that strep tests miss 10%. This is all hind-sight. Looking back over the years, our dd probably had numerous strep episodes that were not diagnosed because she had frequent sore throats that I did not have diagnosed because I just attributed them to being viral and they went away. Her most recent strep came without any symptoms whatsoever and the culture was positive. Her Camk score was 163 - definitely in PANDAS range.

 

 

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

[T_Mom]

Hi Tattoomom, I hope this helps--

 

Our d had sudden onset OCD. I still believe that is key to this diagnosis (though may be difficult to decipher over time.) Tics may also accompany the illness. But the onset is sudden and unexplained.

 

She had an obvious reaction to anti-inflammatory agents (ie, steroid bursts, antibiotics.)

Time and time again...when OCD and mild tics would go away with full-strength antibiotics and/or steroid burst.

These did not always "go away" suddenly (though it did improve dramatically a couple of times with Amoxicillan!), but typically gradually, but nevertheless it was an obvious saw-tooth, up and down trend in the right direction!

 

If your child had an "explosion" of ticcing after going off the Amoxicillan (?is that correct) that is essentially what happened to our d once too...Her OCD and mild face-stretching tics exploded after 10 days of Amoxicillan, we had dropped it to half strength on day 11 and her symptoms escalated. When we put her back on full-strength Amox. she got better once more. She continues on it now for a year+

 

In our case, it was only through observing the symptom/treatment effects of antibiotics and steroids (through about 4 exacerbations, two of which were very severe) that we determined Ps.

 

I can't help but wonder what would happen if you could request a month long full strength treatment of antibiotics? Would that be an option you would consider trying?

 

ps--Our d never had a "positive" strep or high blood antibodies "caught" upon testing--Our understanding is that timing is essential and you may not get positive test results. We can attest to "crazy-level" OCD and ticcing abating with antibiotics and steroids:) -- thankfully, we decided it was relatively benign to try--

[mrigsby]

My son will be 13 in March. I'm just now after 6 years getting to the bottom of things. From 6 to 7 he had chronic sinusitus and strep throat 5 times, ended up in hospital 3 times that years. Had tonsils and adnoids removed and sinus cavities enlarged. After we made it through all of that and I finally thought he was healthy, around 4 or 5 months later he was diagnosed with OCD. Since then he has had every diagnoses you can thnk of. Pediatric anxiety disorder. Tourette's. Emotional labiltiy. He has a motor skills problem, very poor hand writing. After reading Saving Sammy at the beginning of month, I took him to pediatrician and begged him to test my son for strep. He seen no connection between my sons behaviours and problems and Strep, yet agreed to do the test to satisfy me. It came back positive. My son finished a 10 day course of Augmentin today. I could tell NO difference in his behaviours, but I think he will need a lot more antibiotics to help him. I am hoping when we go back to be retested that the doctor will finally understand our need for prolonged antibiotics.

[thereishope]

You are correct to take him back to the dr and fight for more antibiotics. Most kids do not get better on amox. There are resistent strains of strep. Here is a link that is often passed along that perhaps you can present as a friendly reminder of that to the ped..

 

http://www.entrepreneur.com/tradejournals/.../169459644.html

 

Also, as you have probably read, many kids need more than the standard 10 days docs like to give. Many need at least a month to see improvement begin.

 

Finally, there is a chance if your son goes back now, you may get a false negative. It was stated here once that retesting should be done 14 days after finishing abx. So, first try your darndest to get a new script w/o another strep test. Try over the phone first. You may be surprised. Some kids will get another + early after finishing abx, but you do run the chance it's soon after meds. If need to, eventually just go ahead and retest him. But, nor do you want your child to suffer for 2 weeks. Too many "ifs" and maybes!

 

 

 

My son will be 13 in March. I'm just now after 6 years getting to the bottom of things. From 6 to 7 he had chronic sinusitus and strep throat 5 times, ended up in hospital 3 times that years. Had tonsils and adnoids removed and sinus cavities enlarged. After we made it through all of that and I finally thought he was healthy, around 4 or 5 months later he was diagnosed with OCD. Since then he has had every diagnoses you can thnk of. Pediatric anxiety disorder. Tourette's. Emotional labiltiy. He has a motor skills problem, very poor hand writing. After reading Saving Sammy at the beginning of month, I took him to pediatrician and begged him to test my son for strep. He seen no connection between my sons behaviours and problems and Strep, yet agreed to do the test to satisfy me. It came back positive. My son finished a 10 day course of Augmentin today. I could tell NO difference in his behaviours, but I think he will need a lot more antibiotics to help him. I am hoping when we go back to be retested that the doctor will finally understand our need for prolonged antibiotics.