Sunday, September 22, 2013

Applying for Disability with Neurofibromatosis

Written by: Ram Meyyappan
Thank you Ram for your patience - The information you have provided in this article is sure to help many people! I have applied and been approved disability for all 3 of my children who have Neurofibromatosis...However, I have been unsuccessful in getting approved for myself.
The process was exhausting...To say the least. However, I am certain that I did the right thing, in assuring health and financial security for my kids as they grow and deal with all the complications of NF.
If you have any questions, you can contact me or Ram...Or just leave a comment below.

Thanks Again Ram!

Applying for Disability Benefits with Neurofibromatosis
Neurofibromatosis is a genetic disorder that can affect both children and adults. It can be a very debilitating condition for a child and can prevent an adult from performing substantial gainful work activity. Fortunately, Social Security Disability benefits may be able to help children and adults who are suffering from this condition.
There are two Social Security Disability programs that you may qualify for. These include Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). If your child is suffering from the condition, he or she may qualify for SSI depending on your family's financial situation. If you are suffering from this condition as an adult, you may qualify for either SSDI or SSI or a combination of both depending on your work history and your household finances.
Qualifying for SSDI
In order to qualify for SSDI, you must have earned enough work credits through your past work history. As of 2013, for each $1,160 that you earn you earn one work credit. You can earn a maximum of four work credits per year. In order to qualify for SSDI, if you are 31 years of age or older, you will need to have earned a total of 20 work credits. If you are under 31 years of age, you must have worked at least half of the time you have been able to since turning age 21. For example, if you are under 24, you must have earned 6 work credits to qualify for SSDI benefits. If you are 27, you must have worked three of the past six years in order to qualify for SSDI benefits.
Qualifying for SSI Benefits
If you have not earned enough work credits to qualify for SSDI or if your child is suffering from neurofibromatosis, you may qualify for SSI benefits. SSI is a needs-based program. In order to qualify, you monthly household income cannot exceed $710 as an individual or $1,060 as a couple. Your household assets must also not exceed $2,000 as an adult or $3,000 as a couple.
Qualifying for Disability with Neurofibromatosis
In addition to meeting the above-mentioned criteria, you must also prove that they are disabled according to Social Security Administration (SSA) guidelines. Unfortunately there is no listing for neurofibromatosis in the SSA's Blue Book. However, this does not mean that you cannot qualify for benefits. It can be done if you provide enough medical documentation to prove that you are completely unable to perform any type of work activity whatsoever. This means providing treatment histories, copies of your clinical records, and lab and imaging results. For a child, it may mean providing the SSA with sufficient proof of a learning or developmental disability.
For more information on how to medically qualify with Neurofibromatosis, please visit:
Applying for Social Security Disability Benefits
You can apply for Social Security Disability benefits online ( or in person at one of the local Social Security offices. When you apply, you will be asked to complete a number of forms. Make sure you fill out these forms carefully with very detailed and specific answers to help the SSA understand how you or your child qualify for Social Security Disability benefits.
Don’t be discouraged if your application is denied. Almost 60% of initial applications are denied. There is an extensive appeals process through which you can try to obtain the benefits you need. If your claim has been denied, you should strongly consider hiring a disability attorney or advocate to help you with the appeals process.
Article by Ram Meyyappan
Social Security Disability Help

Tuesday, September 10, 2013

Another Rare Tumor?

I'm not really sure how to begin this blog post, because I am still processing our long day at the eye clinic.  Lots of long words were thrown at me, and I literally had one of the many doctors we saw write what he had told me down on a piece of paper.

What is it with doctors and their messy, short-hand scribbling?

I couldn't read the writing, so the nurse was awesome and re-wrote it--Thank Goodness!

There is an abbreviated term for what the doctors are thinking Braden is dealing with.  CHRRPE (gosh, even the abbreviation is long.)

Combined Harmatoma of the Retina and the Retinal Pigment Epithelium.  *Whew*

Basically this is a "rare" (yay for us...NOT) type of lesion or tumor of the macula. (The back part of the eye that is responsible for central vision)

We were told that Braden would need eye checks every six weeks, to monitor his vision, because once vision problems happen, it can very quickly take his vision and can very possibly turn into cancer.

It was a lot to take in...But we were thankful and comforted by these very attentive doctors...who told me, that this type of condition is often missed by general eye exams.

For Braden, he has this way of "checking-out", when things get complicated or overwhelming, which - in this case, is a blessing.  All he was worried about, was that it was 2pm, and he hadn't had lunch yet.

We stopped at McDonald's before heading home, and I let him choose ANYTHING from the menu.....A #2- "large-sized".....which he gratefully inhaled.  

Where has the time gone, where Happy Meals were all he wanted?


Monday, September 9, 2013

Thoughts From the Waiting Room

I'm here.  In a waiting room.  Again.  Braden is totally oblivious with how angry I am right now.  He is in for his first test and truly has no real clue why we are here.

I have talked to him.  I have told him that the doctors have concerns...but he has this way of "checking himself out"...when things get complicated.  A blessing in disguise.

I don't get REALLY angry very often. 

As we checked in this morning....the lady at the front desk mentioned how sorry she was for my young sons diagnoses. (First thought....Neurofibromatosis)  "What diagnosis? "  I asked.

"Cancer" she replied

"Uh....he hasn't been diagnosed with cancer! " trying so hard to not just breakdown right there.

"OH.....usually these tests mean.....I'm sorry.  I'm sorry!"

I melted. 

Braden and I walked around the corner to the next waiting legs bairly keeping my body up.

Process and breath.

Today is our appointment with The Rocky Mountain Lions Eye Institute.  I've been both dreading and looking forward to this day for over a month.  I don't know what to expect, but was told to plan for an "all day" visit with specialists who will hopefully give us some answers.

Braden had his 'every-6 month-eye check' last month and the doctor told us that "suspicious calcium and masses" were found way back in Braden's right eye.  This to go along with Braden's already diagnosed LEFT SIDE optic glioma.

But this didn't appear to be a glioma.  It's "something else" our doctor said.

After Braden left the for a bathroom break the doctor showed me images of what he found.  Technology is so cool...And I was able to see the nerves, vessels and optic nerve.  The doctor pointed to the areas of concern and told me that what we were looking at COULD BE early signs of Cancer.


I've been told many COULD BE's in my life, but THIS....I felt dizzy and sick.  I sat down on the chair next to the computer, where the images were flashing -- Braden came back into the room and sat in the exam chair.

Nothing more was said directly to us....Except for "We need to send you to a specialist."

And this is where we are...About to head out for our all day eye appointment....And I realize, just like the day Bailey was diagnosed with her brain tumors and went on chemo....That I have a choice to make.

I can CHOOSE to spend my day worried and fretting over the COULD BE....


I can CHOOSE to spend the day with my teenage son (something that rarely happens) and be happy.

I know the path I am taking today!


(An Update will be posted about the results as soon as I know them)

Tuesday, September 3, 2013

Neuropsych Evaluation

What the heck is it, and why is it needed?

A few years ago, I experienced our first Neuropsych test...And I was blown away with the information I got back.  This testing was part of what got Rachel and Braden's IEP completed with the best possible resources available....And helped ME, when I wasn't able to tell the teacher's what exactly my kids needed.

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, 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.

By lunchtime...Bailey was DONE with all the questions.  
But she fueled up on a cheeseburger and pushed through!

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.  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 write 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 isn't 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.

Monday, September 2, 2013

The Elephant Man

The very first time I looked up the word 'Neurofibromatosis' was when I was a teenager.  I was curious one day, and got my encyclopedia out.  I had this fear inside me, as I read the description.  My brother Mike and my mom definitely had this disorder...While I....Would not get diagnosed until many years later.

I remember the encyclopedia having the picture above in the description and feeling horrible for my mom and brother...Wondering if they would soon look like 'The Elephant Man'.  I slammed the book shut....Never to look up NF again...That is, until my 'official' diagnosis in 2007.

You have to understand where I was - at this point in my life.  My mother called NF "God's Curse"...and had so much anger whenever I would ask questions about it.  I already had a flawed view of what NF was...And to see what NF could be, brought me to a place where I just didn't want anything to do with it.

Recently, I got a GOOGLE alert for Neurofibromatosis, that talked about researchers AGAIN doing studies on the famous Joseph Merrick bones, that rest in a small museum in London.  My first thought, was to just let this man rest in peace!  (Read that article HERE)

But...At the same time, wouldn't it be nice to set the record straight?   I know I am not alone - when I say, I don't like it, when people connect who Joseph had and NF...especially if it is found that he did NOT have NF...But... what if studies reveal that Merrick DID have NF?  Not to stir up any anger here...But it IS possible for him to have suffered from BOTH NF and Proteus.

My thoughts doing a ping-ball dance in my head as I flash back to one of our doctors who claimed he knew "A LOT" about Neurofibromatosis....Calling it "The Elephant Man Disease"....And how I quickly corrected him, telling the know-it-all, that Joseph Merrick...Had Proteus Syndrome...Not NF.  

I talked to my husband while writing this blog post.  When he speaks to audiences about creating a 'Win Anyway' attitude, he often brings up our family and NF. He mentioned that when he brings up The Elephant Man, it's give people perspective about how variable NF can be - and that his wife and kids could walk in and nobody would have a clue they have NF - because, right now at least, it's primarily manifesting itself internally, not externally.  

I love the way he can talk about NF....And appreciate him so much for bringing people to understand it....But for some reason, "The Elephant Man" thing has always boiled up anger inside of me....WHY?? Why are people (including ME) so bothered by this?

It's because, for me anyway, it's scary.  Merrick truly suffered with his condition(s) and lived a life being stared at, mocked and tortured....Eventually dying - trying to be "normal".  He was terribly deformed and I am sure in a lot of pain.....And honestly, he is hard to look at....leaving me feeling like perhaps I can be accused of doing to HIM, what I hate people doing to ME.....I don't like this feeling.  

He was a man, above all.  His story and condition may be a hard one to understand and deal with, but his story is worth learning about.

In the long run, it really doesn't matter if Joseph suffered from NF, or Proteus, or a combination of both disorders.  What DOES matter is letting go of the Stigma -- 

I don't personally use The Elephant Man description to help people understand NF...Because it's inaccurate (until proven otherwise)  While it may help people understand the variability...It just isn't the way I do it.