What is doagnostic criteria?

[Tattoomom]

The reason I ask is back in 2007 when this all started (tics) he was tested for PANDAS. -Anti-Streptolysin & DNASE B Antibody blood work was NEGATIVE-

 

But he has continued to tic, off and on and it flares up really bad when he's sick or getting over an illness. Here's my post on the TS board... they told me to post here.

 

I was here on this forum back in 2007. My original post is here-

 

http://www.latitudes.org/forums/index.php?...amp;#entry15688

 

Ethan is now 8 years old. To bring you up to speed... we put Ethan on a gluten free/casein free diet the summer of 2007 and he did great on the diet, tics were basically nonexistent!! His behavior was still rotten but I was thrilled to see such a reduction in his tics. We decided to take him off the diet in October 2008 to see if the tics would come back and they did. He started blinking again in December, but that coincided with him getting a Wii for Xmas so I wasn't sure if it was food or the video games. We decided to keep him off the diet despite the blinking. Gluten free food is so very expensive and this kid eats A LOT! Anyway, what is so wild is he blinked from December until February and then it stopped for no reason I can find. He was eating what he wanted, he was playing video games, he was stressed due to his baby sister having medical problems, he was being tested at the end of the school year (we homeschool but I paid a teacher to test him) and he did not tic once. He was tic free from February until August and then he started blinking again.

 

In September, he developed a new tic, an eye roll. He did this a very short time (I'd say a couple weeks) and it went away. In October, the blinking came back with some minor throat clearing. In November, he started doing something new, a finger flick. He looks like he's trying to flick something off his finger and he does this on every finger on both hands. And just this past week, he started doing a shoulder/chest shrug where he looks like he's trying to adjust his shirt, but it's clearly a tic.

 

I have definitely noticed his tics flare up right after he's been sick. He had Swine Flu in October and since then, he's had several tics, new ones.

 

I said in my original post in 2007 that there was no family history of TS or tics but just recently learned that my husband (Ethan's father) might have had tics as a child. Not sure exactly what kind of tics he had but he does remember having a vocal tic, some kind of clicking noise. Or at least he thinks so! Obviously it was transient and went away because I've never seen him tic, ever!

 

I'm so confused!

 

~Does Ethan sound like TS? He had a long break this past year(6 months) but has ticced for almost 3 years now on and off, both motor and vocal.

~Would my husband have a TS gene but only got transient tics from it? Or are transient tics not related to a gene?

~Should I try to find a way to put Ethan back on the diet, even though we really cannot afford it?

~Should be look further into PANDAS?

 

I'm doing Natural Calm, Epsom salt soaks and we try to eat as clean as possible.

 

Ethan sees a psychiatrist (who also tics!) and he put him on Zoloft for his anxiety/tantrums. I've been very reluctant to try meds but caved and took the prescription this time. He took his first dose this morning.

 

I'm worried about him and just feel overwhelmed all over again just like I did in 07 when this started! My husband doesn't understand why Ethan's tics bother me so much. I guess as his mother, I just want to fix everything for him.

 

 

The weird thing is... his younger sister is going to the doctor later today for fever & sore throat so I'm taking him with me to get swabbed, too.

[peglem]

His anxiety/tantrums are a red flag, in my opinion. Suggest you look here to see if your son has some unrecognized OCD.

http://www.latitudes.org/forums/index.php?showtopic=6133

 

Dx criteria from the NIMH site:

Q. What are the diagnostic criteria for PANDAS?

 

A. They are:

 

1. Presence of Obsessive-compulsive disorder and/or a tic disorder

2. Pediatric onset of symptoms (age 3 years to puberty)

3. Episodic course of symptom severity

4. Association with group A Beta-hemolytic streptococcal infection (a positive throat culture for strep. or history of Scarlet Fever.)

5. Association with neurological abnormalities (motoric hyperactivity, or adventitious movements, such as choreiform movements)

 

But here is a better guide, developed by parents on this forum:

http://www.latitudes.org/forums/index.php?showtopic=6142

 

Hope that helps. Its lots of reading, but very helpful. Any further questions you have, feel free to post. We'll help as much as we can!

[LNN]

If you don't mind saying what part of the country you live in (just a region, not even a state), someone can recommend a PANDAS doctor. We can all share our experiences, but nothing is better than an office visit with an experienced doctor who will see things you may not (and can also prescribe, which we cannot). There are a half dozen who are very knowledgeable about PANDAS and know what it is and isn't.

[dcmom]

FYI H1N1 has been a trigger for many pandas kids on this forum...

[Tattoomom]

Thanks for the replies!

 

We saw the Ped. today and she said he does not meet the criteria for PANDAS because he's never had a documented strep case. His titers were extremely low when we checked them back in 2007.

 

ASO was 7

DNASE-B <60

 

I asked her why he is so much worse since Swine flu but she really had no explanation except for it being stressful on the body.

 

Since she saw no need to further evaluate PANDAS, is there any harm to just let it go? Or does it serve him best to completely rule it out?

 

As his mom, I hate to not investigate why he's having tics/anxiety/tantrums!

[Tattoomom]

FYI H1N1 has been a trigger for many pandas kids on this forum...

 

You mean it made them worse? What can you do about it?

[Tattoomom]

If you don't mind saying what part of the country you live in (just a region, not even a state), someone can recommend a PANDAS doctor. We can all share our experiences, but nothing is better than an office visit with an experienced doctor who will see things you may not (and can also prescribe, which we cannot). There are a half dozen who are very knowledgeable about PANDAS and know what it is and isn't.

 

We are in Jacksonville, Fl

[Tattoomom]

The weird thing is... his younger sister is going to the doctor later today for fever & sore throat so I'm taking him with me to get swabbed, too.

 

 

Their rapid strep tests were Negative today. My kids have had sore throats with fever several times and never had a positive strep swab. They are sending it for cultures anyway.

[faith]

Tatoomom,

yes, your son sounds like ts, and so does mine. PANDAS can be a cause for this too. Its hard to tell when you don't have the 'textbook' case. we don't either and many here don't either. I only know of one documented strep that caused an exacerbation and abx did help, but that was as far as I went at the time (about 3 years ago) because we had low strep titiers. Did you ever get that done, the ASO and Anti Dnase titers? you shoud do that. since your doctor thinks you don't fit the 'criteria', they may not agree to get the testing, but you can try to convince her, or go to another doctor and try again. someone will agree to give it, it is just a blood draw. Altho, it may not mean much if they are low, it will certainly boost your cause if they are.

 

Today I went to a new pediatrician because I'm thinking of changing, and I told my son's history and inquired if he knew anything about PANDAS. He was knowledgeable and since we would be a knew patient, he drew blood and is going to run that test again, even tho we've had it twice before. he also did a swab (negative) and will do the culture. I was surprised that he is even going to use the blood draw to test for allergies, as he thinks that allergies can cause some increase in tics. My son is already on antibiotics, but I did not tell him that, I wanted to see what his opinion was first. ..... I basically went there today because I wanted a strep test since my son was exhibiting downward behavior, tics, and ocd, and I couldn't yet again ask my present ped to do it, I think he would have thrown me out, lol! I was because I need someone in my own town who can help us, and my present pediatrician basically doesn't think my son fits the 'criteria" either (altho he went along with some things I requested), this one at least was open and has a few tourette patients, so at least he's more knowledeable.

 

Also, someone I havn't spoken to in a while and told me today that she kept at asking for the titers testing, and their doctor balked, and when she finally got it done, it was thru the roof. antibiotics has helped greatly. so it was good to hear that. ... altho its making me wonder now if it is those with the high titers that respond faster to antibiotics?... .... but that's another thread.....

 

Faith

[Tattoomom]

Did you ever get that done, the ASO and Anti Dnase titers? you shoud do that. since your doctor thinks you don't fit the 'criteria', they may not agree to get the testing, but you can try to convince her, or go to another doctor and try again. someone will agree to give it, it is just a blood draw. Altho, it may not mean much if they are low, it will certainly boost your cause if they are.

 

Faith

 

We saw the Ped. today and she said he does not meet the criteria for PANDAS because he's never had a documented strep case. His titers were extremely low when we checked them back in 2007.

 

ASO was 7

DNASE-B <60

 

Yes, we checked his titers back in 2007. We never checked them again since they were so low.

[LNN]

I know it's a bit of a drive, but you may want to contact Dr. Tanya Murphy at Univ of Fla Gainsville - she is a PANDAS doctor who may be able to help you determine a proper diagnosis

 

2000 Southwest Archer Road

Gainesville, FL 32608

(352) 392-3641

 

It's at least worth calling her. Here's her background

Dr. Murphy was Director of the University of Florida’s (UF) Child and Adolescent Psychiatry Outpatient Program and Medical Director of Children’s Services from 1994 to 1997. From 1995 to 2008, Dr. Murphy was Director of the UF Child Neuropsychiatric Disorder Clinic. During this time, she was also Medical Director of the UF Autism Unit (1998-2000) and Chief of the Division of Child and Adolescent Psychiatry (2005-2008). Teaching positions at UF included Instructor with the Department of Psychiatry (1994-1995) Assistant Professor (1995-2002) and Associated Professor (Tenured; 2002-2008) with the UF Division of Child and Adolescent Psychiatry.

 

Dr. Murphy is a member of the National Tourette Syndrome Association Medical Advisory Board and the Regional Obsessive Compulsive Foundation Scientific Advisory Board. She is a member of numerous professional organizations including the American Academy of Child and Adolescent Psychiatry, the Anxiety Disorders of America, the Movement Disorders of America, and the Society of Professors of Child and Adolescent Psychiatry.

 

Dr. Murphy joined the faculty at USF iin 2008. She is currently a Professor with the Departments of Pediatrics and Psychiatry, and holds the Maurice A. and Thelma P. Rothman Endowed Chair of Developmental Pediatrics.

[thereishope]

In regards to not having a documented strep infection, there are others whose children have PANDAS w/o a documented infection as well. I know for 2 of them, the original trigger was a staph infection.

 

If you give Ibuprofen, do you notice symptoms easing up?

[peglem]

My daughter had never been tested or dx'd with strep before age 10, because nobody ever bothered to check until I requested it. But, though those 1st 10 years had no DOCUMENTED cases of strep, I know that she did have strep, because in hindsight the "streppy" behaviors had been there. So, documented schmocumented (I always like to say ), it doesn't mean there never was one. So it doesn't rule out PANDAS.

[Tattoomom]

I know it's a bit of a drive, but you may want to contact Dr. Tanya Murphy at Univ of Fla Gainsville - she is a PANDAS doctor who may be able to help you determine a proper diagnosis

 

Oh wow! Thank you!! Gainesville isn't far at all!!

[Tattoomom]

If you give Ibuprofen, do you notice symptoms easing up?

 

I've never tried, hmmm....