Survey results -- boys vs girls symptoms

[Buster]

Some other results from the survey:

 

First, please remember that this is not a controlled research study and is anecdotal -- but I sure would like a followup on this. For 35 girls and 65 boys:

 

Only 15% of girls had elevated ASO or Anti-DNAseB over the course of the illness

Whereas 54% of boys had elevated ASO or Anti-DNAseB

 

In addition, 23% of girls did not have a rise in ASO or Anti-DNAseB despite a positive throat culture

whereas 14% of boys had this situation.

 

What I'm raising is that boys were ~4x more likely to have a rise in ASO or Anti-DNAseB

Whereas girls were ~2x more likely to be labeled as "carriers"

 

If we look over the whole of the illness, people indicate the following symptoms:

 

There are differences between overall symptoms over entire course, symptoms at onset and symptoms pre and post interventions.

 

In this data set, you'll see that boys have more tics/vocal and girls more restrictive eating.

 

Buster

P.S. AI: stands for "Age Inappropriate" in the graph

Edited August 14, 2010 by Buster

[norcalmom]

Thanks buster. Poor girls without tics and titers, I'm

Sure there are so many out there not getting help. Dr k thinks vast majority of anorexia is really pandas, he mentioned Swedo working on it too, but did not talk about her opinions as related to infectious disease.

Did any of the anti neuronal Cunningham test have a sex correlation?

Sorry to keep badgering for more info. I find it fascinating.

Btw-I know your ds had relapse, did you happen to do another Cunningham test when she relapsed?

[EAMom]

Poor girls without tics and titers

Love that!

 

The question of the day is...are "regular" girls (meaning non-PANDAS girls that have had strep) also less likely to have elevated titers (vs "regular" boys)?

 

Or is it just PANDAS girls that are less likely to have elevated titers (vs. PANDAS boys)?

[Buster]

CaM Kinase II was not correlated with male/female (that I could determine). Anti-neuronals also did not seem correlated with symptoms or with sex. This surprised me. I wonder if I didn't make the question tight enough to ensure symptoms could be correlated with CaM Kinase II. I think the only way to really get at this would be to run as longitudinal studies.

 

Buster

 

 

Thanks buster. Poor girls without tics and titers, I'm

Sure there are so many out there not getting help. Dr k thinks vast majority of anorexia is really pandas, he mentioned Swedo working on it too, but did not talk about her opinions as related to infectious disease.

Did any of the anti neuronal Cunningham test have a sex correlation?

Sorry to keep badgering for more info. I find it fascinating.

Btw-I know your ds had relapse, did you happen to do another Cunningham test when she relapsed?

[norcalmom]

There could be other reasons our data like this. Longer it takes to get diagnosis, more Likely lowere titers. Also, certain strep docent raise aso, are girls more likely to get that kind? I can't believe that in general population girls titers not rising could go unnoticed(perhaps I am naive?)

 

I know it's funny, but the tic was best thing that happened to ds. Without it, I probably would have never found pandas since he did not have strep (that was documented) and by time anyone took titers it was 9 months later. In retrospect, I think he had perianal strep that I treated with topical antibiotic ointment.

[Megs_Mom]

Thanks buster. For this mom of a no tics, no titers girl, it's reassuring to see a pattern. This would be a very interesting research study, that might help in diagnostic criteria. We had the restrictive eating as well, and my biggest fear is that this would come back to us when she is a teen. You've helped clarify my thinking about why I want 100%, not 98% with continued minor blips. Thank you.

[thereishope]

Hm. I look at the chart and what my SON had as his strongest symptoms falls into what the girls experienced strongest. For him, the exacerbations I referred to while taking the survey was when he was between just turning 5 until almost 6 years old. Could his age play a factor in it? Meaning, are hormone levels different in a 5 year old boy vs say a 9 year old boy? But, then, I cannot remember the average age of the boys in this survey.

Edited August 14, 2010 by Vickie

[nevergiveup]

Buster, Has anyone ever looked at whether teenager with anorexia, had saw tooth symptoms since childhood? Just wonder since food is a big issue for my dd and has been Very relapsing remitting since she was 7 years old? Thanks!

[Buster]

Hm. I look at the chart and what my SON had as his strongest symptoms falls into what the girls experienced strongest. For him, the exacerbations I referred to while taking the survey was when he was between just turning 5 until almost 6 years old. Could his age play a factor in it? Meaning, are hormone levels different in a 5 year old boy vs say a 9 year old boy? But, then, I cannot remember the average age of the boys in this survey.

 

This is actually the problem in the survey. I have the data, but even with 100 participants it would be considered underpowered for cutting for factors like age.

 

The mean age of onset for girls (5.7 years) -- median 6

mean age of onset for boys (4.96 years) -- median 4

 

Many of the symptoms are not distinguishable in the younger set.

[Buster]

Buster, Has anyone ever looked at whether teenager with anorexia, had saw tooth symptoms since childhood? Just wonder since food is a big issue for my dd and has been Very relapsing remitting since she was 7 years old? Thanks!

 

Clinically, Dr. K has studied this group and finds that there seem to be 3 classes of anorexia

• sensory -- restriction due to color, texture, odor, ...
  
• obsession -- restriction due to fear of choking
  
• dysmorphia -- restriction due to body dysmorphia or fear of weight gain
  

 

He sees the first 2 in younger kids and the last one in kids post puberty. Our child had the third type at age 7. Dr. Mae Sokol studied these three groups and as far aas I know her work wasn't pursued after her death. Here is one of her early papers:

http://www.ncbi.nlm.nih.gov/pubmed/10933123

 

Buster

Edited August 15, 2010 by Buster

[peglem]

Just nagging at the corner of my brain- there may be an entirely biological basis for gender based symptoms, but I can't help but think there is a social component as well. I think the "flavor" of my daughters OCD is largely based on experiences or instructions she's had that are exaggerated or overgeneralized into pathological proportions. I think the fact that socially we stress different things for boys and girls may contibute to differences in OCD expression.

[dut]

I agree with the socialisation bit. When our dd had her 1st recognised episode at 4, her OCD symptoms were, in addition to contamination fears, fears that surrounded any safety message we had ever given. At first I thought I had "made" her neurotic but realised our messages had been the normal ones but her OCD had ramped them into monsters. E.g. don't play with plastric bags became her refusing to touch anything plastic to her mouth or even close to her face in case it stopped her breathing. Literally, 4 years of safety messages became OCD obsessions.

 

I'm also wondering with the more subtle issues such as anger and mood, if parents are more sensitive to those kind of changes in a girl but more "forgiving" of it or maybe notice it less in boys due to the expectations of 'boys being boys'.

[Suzan]

I agree with the socialisation bit. When our dd had her 1st recognised episode at 4, her OCD symptoms were, in addition to contamination fears, fears that surrounded any safety message we had ever given. At first I thought I had "made" her neurotic but realised our messages had been the normal ones but her OCD had ramped them into monsters. E.g. don't play with plastric bags became her refusing to touch anything plastic to her mouth or even close to her face in case it stopped her breathing. Literally, 4 years of safety messages became OCD obsessions.

 

 

These are my girls issues too. They don't want to even step on a cigarette butt, prefer to not even see them. Would not touch steak knives for years and had to have them removed from the tables at restaurants, very fearful in parking lots, etc. I still have trouble talking to them about safety because it freaks them out.

 

Susan

[airial95]

 

I know it's funny, but the tic was best thing that happened to ds.

 

That's funny, we've said that too but for different reasons. We were 6 months into the dx with OCD and ODD as our primary issues when his facial tic started. It's been a blessing in disguise since we notice it gets significantly worse as his anxiety increases (OCD related or otherwise). We now use his tic to identify when we're headed for a colossal meltdown and have even been able to successfully avoid some because of his new "warning system". Of course, I'd love to get him 100% better so it's not needed hough.

 

And Buster - you ROCK!!

[Buster]

Bumping an old post to see if anyone has looked at this boys vs girls symptom thing in more detail.