Neuropsych Testing and Neurofibromatosis

Neuropsychological testing is an evaluation of a child's mood, behavior, personality, cognitive ability and over-all IQ.  The testing takes 6-8 hours and is performed by a licensed clinical Neuropsychotherapist.  Lucky for us, our doctor also specializes in children with Neurofibromatosis.

The testing includes various aspects of attention, memory, speed of information processing, language, visuospatial ability, sensory processing, motor ability, higher-order executive functioning, and intelligence.

Anyone with a Neurological disorder, or any type of brain injury should have this kind of testing done, not only to provide vital information to care givers and teachers, but also to provide parents with an understanding about how their child learns, so that they can find proper resources, as the child grows.

Common Questions

*Why should my child have a Neuropsych test done?

An accurate, scientifically based evaluation leads to personalized and more effective treatment, rehabilitation and life adjustments.  The test provides vital information about how your child learns...This information can be passed on to educators, who then can make school, a much more positive experience.

*Does Insurance cover this type of testing?

Typically yes.  Depending on your coverage and plan.

*How do I get the results of this test?

A few days after the test is performed, you will meet with the doctor, who will go over the test.  Your child, typically does not need to attend this meeting.  Any questions you have about the test, or specific questions about your child will be answered at this time.  Further testing, and/or treatments may be recommended. You will also receive a printed version of the test, in the mail about a week after your meeting.  Keep this in a safe place and make copies for your child's school.  You can request an IEP meeting, to go over the test with your child's teachers.

The results of this test can be quite overwhelming...So be sure to ask the doctor any questions you may have.  It may also be a good idea to prepare questions ahead of time, and bring a notebook, to jot down the answers to those questions.

Based on the results of our child's testing, here are some of the questions we had, for our doctor:

*What does the "overall IQ score" mean?

*What kind of future can we expect?

*Based on these results, what kind of job skills or training will be needed?

*How can we get the school, to help with the specific way our child learns?

*What types of rehab/therapy are available?

No matter what the results say, remember that, every single child is unique and special.  The results only define the way your child learns and how they process information. Low IQ scores, does not mean your child isnt smart...It just means your child learns, in a very specific way and the test results will help guide your child to the right kind of therapies and treatment...and is an essential part in finding ways to personalize their education.

If you have any specific questions, please feel free to contact me, or just comment below.

3rd Annual CTF Neurofibromatosis Awareness Walk!

The weather was perfect and the kids were all dressed in their walking gear as we headed to Littleton, Colorado for the 3rd Annual CTF NF Awareness Walk.  The walk took place at Clement Park and had a turn out of over 200 people!  Friends and and family members dealing with the diagnosis of Neurofibromatosis came out to show their support by taking part in the walk and also providing much needed donations, to help fund research.

"Team Thrive" had their NF green shirts on and sported  trendy blue/green hair!  Five of the Nine people in TEAM THRIVE are affected by Neurofibromatosis, including my 15 year old daughter, who is currently undergoing chemotherapy treatment for a brain tumor, caused by NF.

One of Bailey's doctors as well as Adam Foote from the Colorado Avalanche came to show their desire to learn more about Neurofibromatosis, the tumor based disorder that affects more than 3,000 births, each year.

After the walk, which was about a mile, family and friends shared a BBQ lunch and took park in the great items in the silent auction.  The total amount raised was over $20,000!

I'm in Control-Right?

One of the most powerful things most people want in their lives, is control.  When we don't have the control, I know for me, the tension and anxiety that comes from that is extreme. Just ask Rich - I can be a terrible backseat driver :)

Who controls NF? 

The doctors? The Pharmacists? The Insurance Companies? They all have some control in how we deal with it, but in the end, NF controls itself. The real question is, does NF control YOU? 

I know all too well how devastating living with a progressive, potentially terminal disorder is on a person, and a family. How frustrating it can be to hear that nothing can be done or that I have to simply endure my pain.  There is nothing more frustrating than the feeling of helplessness.

 

Not being able to control how bad my NF will get is something I think about every single day.  I often wonder if the tumors will get so bad, that my husband will fall out of love with me....Will my looks determine who stays and who goes?


Medically, NF has taken over - it's all over my Facebook page and the hundreds of e-mails I receive from people desperate to get back some of the control that they have lost.


It's easy to get lost in NF. To lift our hands off the steering wheel of our lives in despair, and let it drive us wherever IT wants to go. But that moment of 'easy' turns into a lifetime of hard feelings, disappointment and depression. 


Having Neurofibromatosis teaches me almost daily that the only true control I have is how I manage and deal with the things that happen in my life, from tumor pain to taking my daughter to chemo to facing myself in the mirror every mornng. 

 

Keep your hands on the wheel. Hold on tight. The road ahead is full of curves, construction, speedbumps, potholes, falling rocks, animal crossings, and traffic cops. Sounds terrifying, but it's better than letting NF drive you - because it will drive you straight off a cliff.  

Why Neurofibromatosis?

"Why do you have those bumpies on you mama?" My 8 year old daughter wraps her arms around me.  "'Cuz I have Neurofibromatosis, sweetie." I tell her.  "I know you do, but WHY do you got that?"  I snuggle Rachel in close to me and look at her cute little face...Her sweet eyes, look back at me, through bi-focal lenses.

"God sometimes chooses the strongest souls....Ones that HE knows, can handle really difficult things, and He marks them, so that He can tell them apart from everyone else." I explain to her.

"Is that why I got these brown marks all over me?"  She asks me.  "Yes, sweetie.  And God marks everyone in different ways...Some people just have marks that are more noticeable than others."

"When I grow up...I want to be just like you, mama!"   "Why is that honey", I ask Rachel.  "Cuz your God marks are really pretty!"

I can't medically explain Neurofibromatosis to Rachel...Not yet anyways...But I can help her to believe that no matter what, she is wonderfully and beautifully made by God.

Ice Break Speech- Neurofibromatosis!