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FOR VICKIE:

 

Maybe you mentioned this and it's too early for me to think. I have all 3 kids at home on vacation and I have all my baking to do and start cooking. It's gonna be a long day!

 

So, back in Sept, do you recall a possible cause and effect for the probelms that surfaced. Perhaps not only in a matter of days but weeks? Did he go on any antibiotics back in Sept? He suddenly became sick with a fever of 100 for five days straight and a bad sore throat. On the second day I had my ex take him to the dr. I had to take my daughter to a college interview. He didn't ask for a strep test and the doctor didn't see that he had to do one. He said it was only a virus. Because it was a 'virus' no antibiotics were given. I remember him being cold and just shaky with his fever. On the fourth day I called the dr's office to tell them that he still had a fever. Should I take him in. They said that it wasn't considered a high fever until it reached 101. I can kick myself now for not taking him in again to get a strep test. You see my doctor won't give antibiotics if a strep test does not come back positive. He was out Monday thru Friday. The following Monday he was back in school. By Tuesday his tics / OCD began. He had these obsessive thoughts about a girl he had 'hurt'. You know the pre-teen angst that goes on in middle school. He just couldn't get over that. We would be at a restaurant and he'd sit there ... mumble and his eyes were almost closed. His grades went from A's to FAILING. He wouldn't look me in the eye. His conversations would be directed to his sister instead of me. Did not want to be touch or hugged. I can say that we did not see any tantrums / crying .... just the obsessive thoughts / OCD (when opening doors... should he touch it or not... open it 4 times.. The shower had to be turned off/on four times. etc.) (my daughter's argument was that he watched too much of MONK) and the tics (twitching of the face / clucking with his mouth / eyes rolling).

 

I think because he's older he is more vocal about what's going on with his tics. I bought the Saving Sammy book yesterday ... and YES.. I finished it today. My son read the back cover while I had put it down. We were going to the store a while ago and he said he understood why Sammy had to walk 'stuck' to the walls and why he couldn't open doors. His sister and I just stood there and waited for him to say something. He said it's not that he wants to do it... it's that he has to. Maybe he thinks he's going to turn into something he doesn't want to be. Then he changed the subject. (sigh)

 

When you think back through life, have you notice an abupt change in him before? Yes I have been looking back at what he's done. Like I've read in this forum... I remember he wanted to always wear his belt tight in 1st grade... he also had separation anxiety when I dropped him off at school. This went on for the WHOLE year. (new Catholic school and he wasn't a fan of going to mass every Friday. he slept thru mass the 3 yrs he was there.) He was four when his tonsils were removed I don't remember him having any tics / OCD before the tonsil removal. Yes, strep was diagnosed many times. I'm thinking that because he was given antibiotics when the strep was diagnosed that is why he didn't show the tics/OCD. Looking back... I did see that he had an OCD of turning doorknobs of certain doors in our house. The doors were opened.. never closed. He just had to turn the doorknobs... on both sides. I just didn't think much of it since that was the only thing I had seen him do. He confessed last night that he thinks his OCD has been going on since 4th grade. I can say he is so much better than when he first started with this back in Sept. With the minor head cold he's come down with and the holidays.. his tics have come on a little stronger.

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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

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Let me just add that my son had to be screened for Asperger's when I took him to the psych at 5 1/2 because all that was present at one time, even though there was never a concern of that prior to PANDAS. Well, by the time we had the appt, he was fine and she said he definitely did not fit the profile. I knew it, but I was thankful it was in writing. A decent amount of parents on here have been told by either a doc, a psych, or teacher that their children should be screened for autism, when it was PANDAS. If you read what some traits of autism are, they are similar to PANDAS. I wonder how many kids are actually mislabelled with autism when it was actually PANDAS.

 

If at all interested in reading up more on Asperger's and autism, you can go to

 

www.autismone.org

www.generationrescue.org

 

Some of what is cited on these sites, mirrors the struggles we go through.

 

 

Have you htought about making a trip to one of the experts? I know it's hard w/o a spouse on board.

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I wonder how many kids are actually mislabelled with autism when it was actually PANDAS.

 

Yes. I wonder how many PANDAS kids are misdiagnosed with autism (or bipolar, adhd, generalized anxiety disorder, tourettes, ocd...) that are actually PANDAS.

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Let me just add that my son had to be screened for Asperger's when I took him to the psych at 5 1/2 because all that was present at one time, even though there was never a concern of that prior to PANDAS. Well, by the time we had the appt, he was fine and she said he definitely did not fit the profile. I knew it, but I was thankful it was in writing.

Have you htought about making a trip to one of the experts? I know it's hard w/o a spouse on board.

 

 

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...

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What labs should I request the Pediatrician do?

 

ASO & DNASE again?

IgG Subclasses?

 

Anything else???

 

 

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 :lol:

 

I should try to get Zith or Augmentin right? Is 14 days enough?

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What labs should I request the Pediatrician do?

 

ASO & DNASE again?

IgG Subclasses?

 

Anything else???

 

 

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 :lol:

 

I should try to get Zith or Augmentin right? Is 14 days enough?

Just my opinion, 14 days is not enough. If your child is yeast prone- augmentin is infamous for yeast. My child does best on zith- but at full dosage. Zith seems to be one that is prescribed for shorter periods of time. The usual is a 5 day course (the zpac) My daughter is coming down from exacerbation right now- we did 5 days at 500mg/day, then switched to 500mg every other day.

At one point in our journey (several years ago), My daughter got an injection of penicillan. It worked for 10 days...then the strep came back. But my daughter most likely is a strep carrier. That makes a difference, because with strep carriage, you need an abx that will go intracellular.

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Did you request anything else? You can either request a change now or you can do the 14 day trial of penicillan then if there is no improvement, tell him you'd like to try a stronger med and provide him with the article about resistent strep and needing stronger meds than pen and amox.

 

Or you may even see some improvement on the penicillan and that would convince him to do more.

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Did you have the child tested for Mycoplasma Pneomonia?

Our almost 20 years old case started almost 5 years ago. Her ASO has always been negative BUT ca a month before this sad story started back in spring 2005 she had Influensza A and Mycoplasma Pnemonia - both tested positive.

We benefitted from antibiotics and Prednisone back in 2005 and had her well for a year, but subsequent upper resp. infections retriggered the condition. Long course of prednisone did not help, IVIG did good but the doctor got cold feet after the maintenance schedule was messed up by the paying body and ever since we were left to suffer. Psyco meds did only harm.

Her Mycop.P IgG titres are positive, high and fluctuating and we are working hard to get the medical establishment to try long term antibiotics and consider other lines of immunological treatment in case that will not suffice.

 

Hope this helps,

Bat-Sheva

Finland

 

 

I asked the Pediatrician last week if they'd be willing to do a trial run on antibiotics to see if it would help ds's tics,anxiety,ocd, etc... and the Ped. said she did not feel comfortable "Going into this blindly" to quote her. She's convinced it's not PANDAS because back in 2007 when this started, his ASO and DNASE-B were negative, as well as throat cultures. These tests were done 3 months after symptoms started.

 

He also tested negative on rapid strep test last week, during a sore throat episode so she said he doesn't meet diagnostic criteria!

 

What can I do? We really cannot afford to travel for help. We're in Jacksonville, Fl and the only DAN doctor here has a 1+ year long wait and doesn't accept insurance :(

 

If I ordered the CAM kinase test, how will that help me? Are we qualified to be in the study since his tests were negative for strep?

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