Monday, September 27, 2010

Colorado NF Clinic

I don't know how many of you, who have been diagnosed with Neurofibromatosis, also have issues with extreme anxiety, but the drive to the Children's Hospital in Aurora, proved that I definitely have issues with this.

I white knuckled almost the ENTIRE drive! The traffic was horrible and I felt my heart racing, as it took us over an hour to get there!

But just as we walked in the doors of this amazing hospital, I felt the tension melt away. The cool air hit me and Bailey and I raced to the elevators. We rode to the third floor, to the genetics clinic and met with some amazing people!

I was feeling very blessed that my daughter and I had an opportunity to visit the NF Clinic, knowing that there are so many families out there who are lucky to find a doctor who is well educated about Neurofibromatosis.

We met with Dr. Lohr, who was really awesome. A Pediatrician, who has now taken an interest in childhood disorders (specifically NF) I was immediately impressed with her. Some doctors come off as rushed, impersonal, get-to-the-point type of people...Dr. Lohr, however spent quite a bit of time with us.

She examined Bailey, first starting with simple reflexes. Then Eyes, Ears, Mouth, Nose. She noted that Bailey's blood pressure was a bit high. This really concerned me, but I was told that many things can be a factor of making blood pressure high....for example, running up stairs, being sick, or simply being nervous.

We will have blood pressure checks frequently to rule out any problems.

Dr. Lohr counted Bailey's "spots"...This has always been the most uncomfortable part of an exam for me. While I was at NIH, participating in NF research, I was actually examined under black lights, from head-to-toe.

I think I was more concerned with my jiggly belly, then my actual tumors...but I got through it, and hey, what's a little embarrassment, if it's in the name of research, right? :)

Before the Dr. left, I handed her a handful of 'Thriving with NF' bracelets, and she was excited to ask if she could hand them out to the other NF families. :) *YAY*

Next we met with Jane Cahn. A wonderful lady who works with the Children's Tumor Foundation. We sat and talked for a while...I asked Jane about becoming a part of CTF and she was thrilled to tell me that she wanted me to write for the newsletter, and possibly volunteer at the hospital, to help newly diagnosed families deal with all that Neurofibromatosis brings.

Dr. Gary Bellus was the last doctor we visited with. He told me how happy he was to see a family who was THRIVING with this disorder. He answered a few questions I had about NF....which really made me happy. I had grown very tired of the "I don't know" responses from so many doctors.

My questions were:
1- If a person does NOT present with plexiform neurofibromas during childhood, what are the chances they will develop them as an adult?
***Answer: "It is VERY unlikely, that a teenager or adult will suddenly present with a plexiform. They are typically diagnosed in childhood. But it is possible for someone to be unaware they have a plexiform--because they were not imaged or diagnosed...or just because of lack of proper health care."
2-Optic Gliomas. How likely is it for an adult to develop a optic glioma?
***Answer: "Very unlikely for an adult to be suddenly diagnosed with an optic glioma. These Tumors are diagnosed in childhood, after MRI imaging." He went on to say that baseline MRI's are not typically ordered for children who are not presenting symptoms to warrant further testing.

As we were leaving, Jane invited Bailey and I to the NF Symposium on Sunday. She will be a speaker there--how could I say no to that!? So, Bailey and I have a date to spend all day Sunday at the hospital, to learn more about NF, and meet others dealing with this diagnoses.

All in all it was a GREAT visit. Bailey got to mention that she may be participating in NF research at Vanderbilt University in November....and even bragged up her mom, for writing a book...what a great kid!

I am finding that the more I learn and get involved with NF related things, the easier it is to Thrive with my disorder. It could be things like shaking someones hand at a walk that raises money for CTF. It could be the doctors who really take the time to learn the ins and outs of an extremely complicated disorder, or it could be my beautiful, quiet daughter, who suddenly comes to life when she talks about her own battles with NF...and how she feels about living with the complications.

The fact remains...If you plan to Thrive with anything in your life....You must first understand it. Then surround yourself with others who are dealing with the same thing. Knowing you are not alone in your struggles is a key part in not allowing those struggles to consume you.


  1. **tear** awe. what a wonderful day you had.. you and bailey are amazing. So happy for you. enjoy the symposium.. who knows one day soon u may be speaking at one yourself.

    love you all .

  2. My daughter did not present with her plexiform Neurofibromas until she was in her 30's, however she was diagnosed with NF at the age of 18 months. I believe however that she likely had them in her 20s. She was living with her father at the time and he was not the most observant person, plus he was willing to treat the pain rather than research the source of it. Now that she is no longer with him, I am back in charge of her health care once again. In January of this year, I begged her doctor to do MRI's of her whole spine and low and behold, she has hundreds of plexiform neurofibromas that she DID NOT have in childhood. So I am here to tell you that yes they can develope them in adulthood.

    1. My son also was not diagnosed with plexi's until 15 yrs old. Our drs told us that they were always there...just small enough to be missed.

  3. Do you know if there is an NF Clinic in Colorado for Adults? My daughters doctor is not willing to remove any of the hundreds of tumors in her spine that is causing her extreme pain. We need a second opinion. She is in such horrible shape right now and I fear she is giving up.

    1. YES! University Hospital in AURORA- I go there.

  4. Kristi, You go to University Hospital in Aurora? Can you tell me the name of your doctor? Thanks you!