Neuropsychological evaluation and our 22q experiences 2017

For those of you who have asked about what the neuro eval was about this week that we had for Bella on Tuesday.
Here is some more info for those of you with 22q who would consider doing one for yourself or your children.
Anyone with a genetic disorder is suggested to undergo a
Neuropsychological evaluation
Bella had one done at 5 years old and it has helped guide us through her medical appointments and IEPs at school. Bella has physical and emotional ADHD and sensory processing disorders as well as a mild form of cerebral palsy so this is our road map for treatment plans we put in place to keep our Bella as healthy as she can be. I only wish I was able to get this kind of test done as a child and that my parents knew about this disorder.

Here is blurb about what (NPE) is a testing method through which a neuropsychologist can acquire data about a subject's cognitive, motor, behavioral, linguistic, and executive functioning,
A neuropsychological evaluation is a comprehensive assessment of cognitive and behavioral functions using a set of standardized tests and procedures. Various mental functions are systematically tested, which may include but are not limited to Intelligence. Problem solving and conceptualization.Neuropsychology is concerned with relationships between the brain and behavior. Neuropsychologists conduct evaluations to characterize behavioral and cognitive changes resulting from central nervous system disease or injury, like Parkinson's disease or another movement disorder. In Our case with Bella, it was for 22q11.2 deletion syndrome as having the missing piece of genetic material causes all kinds of miss communication to our body's mind nd body connection. Overall health and physical and emotional performance.
I will write more of what we found with Bella after we get the report from the doctor in two weeks. I will also take you along our journey of her treatment plans. You will want to subscribe to my blog and this facebook page because I only write about this stuff on my blog for my subscribers to keep nosy gossipers away and fear mongers away to protect myself and my daughter. I hope to see you over on the blog and follow along on our journey
On my personal facebook, I did a few updates during our appointment experience.
We had ours done at mary free bed in grand rapids mi and it was from 8:45 am until 5:30 pm an overall full testing takes time and it was a long day but so worth it. Our insurance was accepted at Mary Free Bed in Grand Rapids, Mi
We were referred to get this test from u of m yet at U of M this test was not covered by Medicaid or children's special health because U of M simply is not the open network for Medicaid or children's special health.
at mary free bed under Medicaid children's special health it is covered so that is where we ended up going they are in network for the psychological department. I had to search and find a different place to take her that would accept our insurance. We did have to wait a while and get this done closer to the end of school year so Bella didn't miss a lot of days because after this test we will have multiple doctors visits to different specialist at mary free bed week after week which in high insight having the specialist in grand rapids is a blessing rather than having to travel all the way to ann arbor for all of the other specialist. Having a child with special needs often requires multiple trips to special doctors and we have had to go to Grand Rapids, Kalamazoo and U of M to find doctors who knew what 22q even is
I hope this helps some other parents so they don't have to go through what we have had to do just to get one test done that is so desperately needed.

Here is how the neuro eval went and how long of a day we had waiting in yet one more waiting room.

. They have this room called Quiet it's their quiet room. It is perfect for using laptops and just enjoying the Quiet this place is busy too. This room is where I wrote this entire blog post.  I had lots of hours to find info to share with everyone and felt that sharing our personal experience with our child might help another 22q parent who is going through or considering how to go about having a neuro eval done for their child.  By the way, Bella had a neuro eval at 5 years old and was first diagnosed with ADHD both physical and emotional and has been on medication but as she has hit puberty it is time to adjust medications and further treatment as we have seen anxiety issues as well as sensory processing issues. 

The day started at 8:45 am and we finally ended at 5:00 pm. We talked, we walked, Adam slept his chill factor is on point maybe a bit too on point I had to get up, and I walked some more.  I would have listened to my snoring husband in a quiet room. I become restless in waiting rooms even though I have sat in millions of different waiting rooms it always on the edge of the seat feeling for me as a mother to know my child is being tested for yet another test a new treatment plan, which means more changes in the future for all of us. Bella had come back to us a few times and took mini ten-minute breaks to sit with us and color or just stretch her legs and go to the bathroom. Then we took a long break for lunch come back for a few more test.

Here are some pictures of our day




I want to know have you or your child ever had a neuro eval?