Insurance is a Wonderful Thing!

Having insurance is a wonderful thing, just ask anyone who doesn't have it. We are fortunate to have excellent coverage and feel blessed for that. In the process of learning about Evan's condition & choosing his best options for treatment, we have traveled to multiple states for additional opinions and tests. All the doctors have been in network and we weren't even required to get referrals. Having insurance is a very good thing.

But there is also a downside to dealing with insurance companies and it seems to be the way the overall industry works...they deny a LOT of claims and send bills for things that have already been paid. Trying to resolve these matters requires hours of time on the phone while being transferred from person to person. It is frustrating and exhausting. After all this effort the bills are usually marked as paid because they are for covered procedures, but it is a continuous hassle.

Our most recent issue is with getting a MEG scan for Evan. This test has been identified as necessary to determine exactly where Evan's motor strip and sensory strip are located. The tuber they want to remove is on or near one of them, but there is some question as to exactly where the cortex is located in Evan's case. Basically, the tuber, motor strip and sensory strip all formed at the same time in utero and the formation of the tuber may have caused the two strips to move over a little. The MEG scan will identify where all the brain cortx is located and will then be overlayed on the MRI to give a clear map of the tuber and the cortex involved.

NYU hospital requested pre-approval for a MEG scan from the insurance company. They denied it. NYU sent in an appeal based on medical necessity. They denied the appeal. We can appeal it one more time before we are stuck with the bill, so we are preparing to do that. We're working with NYU Hospital, the insurance company and the HR representative who manages the account and hopefully everything will work out in our favor.

I am optimistic the insurance company will see things our way and realize how important this test is to the success of brain surgery for Evan. Having insurance is a wonderful thing and we are so grateful to have it. Now they just need to compromise and do it MY way!

Going to Boston

Boston is beautiful this time of year, and if you have to visit a doctor in Boston, I think the summer is the best choice for timing.

Having said that, we are off to meet with Dr. Thiele, a neurologist specializing in TSC & epilepsy and Dr. Eskandar, a neurosurgeon at Massachusetts General Hospital. We will be meeting with them on August 13 & 14 just to get additional opinions before we sign on for surgery. We aren't expecting any suprises with these meetings and expect them to recommend surgery, but we want to make sure two hospitals agree before we move completely into this realm.

It's a scary step, but as we move forward it doesn't look like there are other viable options. Evan had over 200 seizures in June and it looks like he'll match or exceed that in July. This is not our choice for an area of over-achievement!

So, there is somewhat of a feeling of desperation sinking in and we have the overwhelming sense that we need to do something. He just can't go on like this and it isn't easy watching him go through it.

My son needs brain surgery

For so long the 5 hardest words for me were: My son needs brain surgery. We skirted the issue and anyone who asked about surgery heard us say we were "considering surgery" or Evan "may be a candidate for surgery." We've seen 10 neurologists and 2 neurosurgeons in the past year and a half, and we've talked about surgery with every one of them, but it always seemed so abstract. We were always projecting out into the future. We'd ask about time frames and they'd say maybe in a year or so. Rob and I would both sigh in relief and leave the doctor's office with a prescription for a new drug and the hope that this one would work. Surgery was still on the back burner.

Well, it's been a year or so, the drugs haven't worked, the seizures have increased and we are now faced with surgery. Not this week and not next month, but sooner rather than later.

Today we spoke with Dr. LaJoie and she told us Evan's blood levels are too high, indicating that the Depakote dosage needs to be reduced to get him back down to a safe level. So, we're reducing the Depakote and adding in a new drug, Zonegran. There is something disheartening about starting yet another drug. We also talked at length about surgery, a concept we are reluctantly embracing.

To begin the process for brain surgery, the epilepsy team at NYU Hospital reviews the case and agrees surgery is the correct recommendation before moving forward. Then things start moving. Today we asked Dr. LaJoie to present Evan's case. For Evan, the team meeting is probably just a technicality, but a process I can respect. This is not something to take lightly and I'm glad that even doctors who deal with this every day still take it seriously.

Funding for TS Alliance Research

A few months ago Rob & I joined a group lobbying on Capitol Hill for additional funding for Tuberous Sclerosis research. The TS Alliance recently asked for additional help in letting our elected officials know the importance of supporting appropriations to the Tuberous Sclerosis Complex Research Program (TSCRP) within the Department of Defense Congressionally Directed Medical Research Program. My mom wrote a heartfelt letter and sent it to all of the representatives in Minnesota. I found it very moving and asked her if I could post it to the blog. Here is what she wrote:

Dear Congressman Oberstar,

Thank you for your support of Tuberous Scerlosis Complex (TSC) that we discussed during your visit to the Finland Recreation Center in March for the St. Urho's Day Celebration.

My grandson, Evan Moss, of Alexandria, VA, was born with this debilitating disorder. Although we are very fortunate that he is mentally high functioning and is not autistic, he has uncontrollable seizures....like 10-20 per day. He is on his sixth medication and it is unlikely that it will control them either. On a recent visit to NYU Hospital, a video EEG recorded over 30 seizures in 2 days......even one is too many. It appears that we are looking toward brain surgery for seizure relief....a scary thought at any age.

Our family and friends have been coping with TSC for almost 4 years and it is emotionally draining for us all and physically draining for my daughter, a Minnesota girl, and her husband. My granddaughter, 5 1/2, not only reports when her brother has a seizure, but also starts counting so that she can also report the length of the seizure.

Since 80% of people with TSC also have autism, perhaps a cure could also unlock some of the mystery of that disease that seems to be affecting our youth in such dramatic numbers.

Please contact your peers in the US House of Representatives Appropriations Committee and ask them to support the $10 million for the Tuberous Sclerosis Complex Research Program (TSCRP). Fully funding the TSCRP is essential to finding a cure for this debilitating disorder. We just need one miracle so that he and many like him can enjoy a healthy life that most of us take for granted.....I don't think one is too much to ask for.

If there is anything that I can do to help you with this cause, please advise.