Candice Lange

Genomics.energy.gov which also contains information on the Human Genome Project, Genomics:GTL and Microbial Genome Program has information on different clinical trial resources and guidelines at http://www.ornl.gov/sci/techresources/Human_Genome/posters/chromosome/diseaseindex.shtml#trials.

A benefit of participating in a research study is a second opinion on the medical information you have gathered.

We found Dr. Dobyns at University of Chicago through www.clinictrials.gov and found out Corey's current MRI was incorrectly diagnosed by an easy mistake. Dr. Dobyns and also Dr. Walsh and Dr. Chang at Walsh Laboratory reviewed his MRI for free and found the paracentral pachygyria, which is fewer folds in the brain. Our local MRI reader said it was perisylvian syndrome, which is many folds in the brain. It is really close but still different.

Doctors from the research studies have expertise in that area of study and may be able to give the second opinion to either confirm the current diagnosis or give you the correct one. Corey's condition is so rare our top doctors in the area had not seen it before. The research doctors were also able to connect us with the few others that had the similar diagnosis.

The drawback to some research is that a free review may take months for a reply. If a quick review is needed then I was told Dr. Dobyns can review MRIs for $150. You would need to ask for a current pricing and the process.

When you log onto Clinicaltrials.gov there are thousands of studies being done for everything over the world. It is best to narrow your search as much as possible including the age range and condition. Request only active or open studies. They are even looking for healthy participants on some studies. Each research program will list its requirements, purpose and contact information. You do not have to live near many of these programs and some will pay all expenses to travel if needed.

I hope this helps you find answers and make connections with others.

What an incredible feeling I am experiencing. An hour ago I spoke with the mom of another boy who is similar to Corey's MRI. Before I felt like we didn't quite fit in anywhere and now Corey is not "alone" in his diagnosis. I laugh as I think of her telling me about her son with so many things as if she was talking about Corey. In this short amount of time we have exchanged our family pictures, stories, laughter and sadness, and hope to meet sometime soon.

Where do I begin telling you our story. I'll shorten it to this story and maybe someday the others can be shared.

A friend asked me if one of her friends could contact me for information on special needs. Her daughter was new to regressive autism and wanted to learn as much as she could. However, in our conversation she helped me more than I could ever imagine.

She had found out about www.clinicaltrials.gov through a family member who had cerebral palsy and went through a trial. This person was loosing their ability to walk and had a new surgery which saved his walking to this day. Everything was free to him and he was treated very well. She went onto the site and found a study on regressive autism and her daughter just being diagnosed was place in the study in another state. Her whole family was flown to the clinic and given royal treatment. Her daughter and her now fly alone several times a year to participate - all at the clinical trials expense. She has learned so much about her daughter's condition and her daughter is receiving the most current care in the field.

After hearing her story, I got off the phone and typed in clinicaltrials.gov. I did a specific search for "children, seizures" and found 65 trials being done worldwide. None of them were of interest to me so I typed other words and found the clinical trial that brings me to writing this story.