Hi, I am new to this particular forum. I've been to hundreds of web sites over the past few years and I'm searching here to see if anyone has any insight to help me. My 8-year-old daughter has been diagnosed with ADD, however, none of the medication have made any significant improvement at all. She was born with a ventricular septal defect ( hole in her heart basically), a preauricular pit ( hole near the top of her ear) , is missing four permanent teeth and has incontinence of the bladder and bowels almost daily. She is highly distractible, CAN focus on what she wants to do (play dolls), has dysgraphia and hates to write anything and is very immature and emotional. My question is trying to find out if she has a genetic syndrome and this ADD type behavior is a symptom of a more encompassing syndrome? It's very difficult- the pediatrican wants us to go for genetic testing and to see a neurogeneticist but insurance won't cover it and it's highly expensive. I've enrolled her in a study by NIH - hopefully they'll uncover something and why meds won't work with her. She was recently on Strattera but developed extremely elevated liver enzymes and was immediately taken off to prevent permanent liver damage. I'm so frustrated - her grades are going downhill and even though she's in special education it's getting harder and harder for her to make it. Thanks for ANY input!

I read this after I had responded to your first post. With the hole in her heart I don't know if exercise is an option, but I would check out Mel Levine's book A Mind at a Time and/or The Myth of Laziness and the website "All Kinds of Minds". He is a developmental behavioral pediatrician and has a lot of good information. They also assess kids -- I don't know if they have any provision for folks who don't have insurance, but you might check it out.

Scattered

It sounds to me like it could be a gene mutation... which of the DSM criteria for ADHD does she fit, exactly?

I am inclined to agree with mcovey, I would have the genetic testing done if at all possible. I can't believe your insurance won't cover this (what a load of dung)it is insane because there is an obvious need due to the physical differences you are describing along with the behavioral ones.

The medications do fail to work on about 20% of the ADD population. I am seeing problems in your description not generally associated with ADD so the medications might not work because they aren't correcting the problem for your daughter.

With the exception of OCD, and a few other conditions just about every thing else can cause poor concentration and easily distraction. Being able to focus on what we enjoy better than thing we don't is often associated with being ADD(although most people are like this just to a lesser degree) these symptoms must be looked at in the context of other traits or symptoms.

NORD (national organization of Rare Diseases) has a database of genetic and orphan diseases.

Here is a partial list of diseases associated with the pre-auricular pit that you mention: http://www.emedicine.com/ENT/topic200.htm

Mcovey is on the right track. Sounds genetic (like a deletion or translocation syndrome, etc?)

VSD is the second most common congential heart problem, in terms of morphology (eg anatomy-wise).