I know I've been a little hush-hush on the whole Detroit thing. That would be because there are A LOT of issues that need to get sorted. Mostly insurance issues. But instead of trying to gather my thoughts and format everything perfectly...I thought it'd be easier to just copy and paste the various email dialogues I've been having. For the interested anyway. I'm even going to color code the emails to help make it a little bit friendlier to digest. And as always...for privacy purposes...I'll be using my various nicks.
Monday June 22nd, 5:25am (Dr. Neuro to me)
How is Trevor doing/How are his seizures? what meds is he on?
I looked at the labwork. His CO2 is slightly low. This can happen with topamax. We have to repeat the lab again and if it is going down he will need bicitra ( to bring up the CO2)
Have you heard from Dr. Detroit?Have you seen Dr Boston 2?
Monday June 22nd, 7:06am (me to Dr. Neuro)
The Topirimate is definately helping.
Trevor is currently at 75mgs am & pm.
We're still seeing clusters all day. They are just milder. And less often. Still anywhere between 50-100 spasms...or 5-10 clusters. Plus...his cognition is really doing well! We're hearing babbling more often again...and picking up old skills that we haven't seen in awhile. Like saying "hi"! I'm very pleased with the direction he's going in right now!
We have started to wean Rufinamide. But still have a ways to go. I've noticed if we take him down too quickly...he has just way too many seizures.
Dr. RockStar has been out of the office. But I am supposed to email his office today actually. I am expecting to hear from them shortly after that. He just wanted to review Trevor's EEG before scheduling an appointment.
I'll be honest, Dr. Neuro. Because Dr. Boston 1 made it sound like Boston would never consider Trevor surgical...during both our office visit and his notes. We want to follow-up with Dr. RockStar as our second surgical opinion. He had a completely different take. And even though Trevy is doing okay on Topomax...it is not good enough. But anyway...unless Dr. Boston 2 could assure me that the surgical team would take a serious look at Trevor's case...I would rather wait. Especially because I do not want our insurance to decline approval because they feel like we've seen too many specialists. If that makes sense.
You were supposed to call me about the Depakote. I haven't reminded you because Trevor is still weaning from Rufinamide...and I was waiting for the liver function results too. So we have not started Depakote yet.
Monday June 22nd, 7:18am (me to Dr. RockStar's Ms. Scheduler)
Hey Ms. Scheduler!
You asked me to send you an email reminder if I hadn't heard from Dr. RockStar by today. Thus the early am email!
He has already reviewed Trevor Foltz's PET scan...and needed to review his EEGs prior to scheduling an appointment. Trevor's neurologist also overnighted the older EEG. It should have been recieved last week sometime.
Thanks so much!
Monday June 22nd, 9:17am (Dr. Neuro to me)
I can definitely tell you that Dr.Boston 2 will be willing to consuider surgical option. I will talk to him. But if you feel we will wait for Dr.RockStar, I am fine with that.We can increase Topamax if needed.Liver functions were normal. We can also consider Depakote.
This would be where I placed a call to our case manager with our insurance. She has been handling Trevy's case for a year now. So she is very familiar with our family. And the journey we've been on to this point.
Listen...not everybody agrees with how I handle things. But I've never been good at poker. And I learned A LOOOOONG time ago...that honesty suits me best. So I have been very frank with all parties involved. Cloak & dagger is just not my style.
Tuesday June 23rd, 11:21am (Ms. Scheduler to me)
If you are interested and thinking of having surgery here, prior to consult I need to schedule Trevor for a video monitor eeg and mri.
You will have the testing on the days prior to consult.
You may want to check with your insurance re coverage.
Let me know your thoughts and then we will go from there.
Tuesday June 23rd, 12:21pm (me to Ms. Scheduler)
Thank you for getting back to me!
Trevor has had two MRIs done. One at Hasbro Children's (Providence RI). And a 3T MRI done at Boston Children's. Would it be acceptable to have these discs sent to Dr. Dr. Rockstar for review? I strongly suspect my insurance will not approve additional testing.
I am working with them now to figure this out.
Also...in the event that our insurance will not approve...how does your office handle these situations? Will you try to work out payment arraingments? Any insight you can give me is greatly appreciated!
Trevy is such an amazing little guy. And despite seizures all day...every day...is doing really well. I can only imagine what seizure freedom would mean for him!
Tuesday June 23rd, 3:00pm (Ms. Scheduler to me)
It sounds like you want everything done here..if he has surgery here Dr. RockStar would like MRI here. (that kinda pisses me off...but whatever. I'm mostly interested in rescueing my kid)
What is your insurance?
Wednesday June 24th, 8:06am (me to Ms. Scheduler)
Our insurance is Neighborhood Health Plan of RI. My case manager is XX. Her direct line is XXX.XXX.XXXX.
We have had several lengthy discussions regarding this. She basically told me yesterday that it's going to take A LOT to convince "the decisionmakers" to cover an out of network trip like this. Especially because Trevor has already been granted a second opinion in Boston. However, our second opinion doctor (Boston Children's) essentially told us that because Trevor's EEG is not exquisitely focal the surgical team would never even consider that as an option. They do not put much weight on the PET scan...which reveals only left-sided abnormalities.
We have also applied for SSI in the meantime. But Trevor's case is still pending. We do meet the financial criteria...but from what I understand they may still deny Trevor?
I don't know...
In the meantime...case manager suggested I have Trevor's local neuro discuss all of this with them to get a better idea which direction this will go...
Wednesday June 24th, 8:24am (Ms. Scheduler to me)
I will wait to hear from you-hopefully things will work out. (I was HUGELY disappointed when I recieved this email. It all feels so overwhelming. And I was hoping that Dr. RockStar's office would be a little more agressive in helping me sort through this... But at the end of the day...I'm just the mommy of one of the 2000 babies diagnosed with IS in 2007. We're all a crazy lot I imagine.)
Wednesday June 24th, 8:48am (me to Dr. Neuro)
I have thought long and hard about Boston vs. Detroit. Of course...if Boston would do the surgery...we would MUCH rather have it done there. Close to home. The big issue is insurance.
I spoke with our case manager yesterday. And to be honest...she made it sound like Dr. Boston 1 was already our second opinion and that's really all Neighborhood is required to approve. So it is going to require a lot of convincing no matter which direction we go. Although she indicated more so in the case for Detroit.
My question to her was...if we see Dr. Boston 2 and he reviews everything. And in the end tells us that the surgical team has declined Trevor. Would Neighbordhood then allow us to go to Detroit...seeing that Dr. RockStar seems to already be persuaded that surgery would be an option.
Her answer was that now we're talking about third and fourth opinions. And this is where it gets sticky. And she recommended you have that discussion with Dr. Decision (from Neighborhood).
I think the bottom line for us is...we would go to Boston only if they would allow us to see Dr. Boston 2 in the hopes that Boston would approve the surgery. BUT if Boston declined then proceed to allow us to move forward with Detroit.
If it's one or the other. We would rather move forward with Detroit. Does that make sense?
I'm so sorry, Dr. Neuro. I feel like this is such a huge mess. And very stressful. I hate that everything feels like a fight. I feel like Trevor's condition is such that they should allow for more than one or two opinions. But that is not the protocol. And in the meantime...I have a little boy here whose brain is fighting SO hard. But unless we can help him...it's a losing battle. Which is probably why I'm so stressed out.
Anyway...sorry so lengthy.
I allowed several days to pass without hearing back. When suddenly it struck me that I should start contacting ALL of Trevy's specialists. Asking each of them to write a letter (or whatever) in support of our insurance allowing us to fully explore surgery for Trevy.
I started with Dr. Genes...
Monday June 29th, 8:52 am (me to Dr. Genes)
Hey Dr. Genes...
Sooooo...a lot has happened since Trevy's in-patient EEG which was the last time we spoke with you.
First of all...his EEG was a mess. And the doctor in Boston emphasized that unless it was equisitely focal he would not move forward with surgical intervention.
In the meantime...we are now on our fifth AED and Trevy's seizures are still out of control. The only happy is that with the recent introduction of Topiramate we've seen some cognition/speech return. But most days end with at least 100 spasms...divided by several clusters.
Also...the doctor from Detroit which we mentioned to you (I hope you remember our convo) looked at Trevy's PET scan and called to say that based on the PET scan and my word regarding Trevy's medical history...that he feels STRONGLY that Trevor is indeed surgical. He's ready to set up an appointment so that we can start moving on this. Our issue is getting this approved through Neighborhood. During my last phone convo with our case manager...she said that we've already had a first & second opinion...and it will take A LOT of convincing for Neighborhood to cover this. She also conveyed that this is really something that only Dr. Neuro (and other specialists) can resolve for me...as it will require meetings with their in-house Dr. Decision.
Sorry this is SO lengthy...I just feel like I needed to bring you up-to-date. My hope for your involvment is two-fold. 1) That you would go to bat on Trevy's behalf with Neighborhood...I'm not sure how much pull you will have but the more doctors we can have on board the better. 2) I have emailed Dr. Neuro...and I know she wants to best for Trevy...but she's also very busy and I just don't want this to get pushed to the backburner. So...not to put you on the spot...but perhaps the next time you have a convo with her you could mention that I filled you in...and ask how things are moving?
Thank you for any help you can offer. Honestly...navigating insurance issues is one of the most stressful, frustrating, infuriating things involved in Trevy's care. But I deeply passionately believe he IS rescueable! And if surgery is an option...we HAVE to pursue it before too much time passes!
Best... ...danielle foltz
If you've hung in this long...bravo! I know much of this is tedious. Boring. 'Cept to my heart. Where it's the exact opposite of boring.
But if you've hung in this far...then the following email will answer the title question...
Monday June 29th, 4:09pm (Dr. Genes to me)
My office e-mail is not working, and I cannot log in, but I wanted to make sure to tell you that I received your e-mail. I am so sorry that you are going through this. It sounds very hard.
I will 1) Present his case this Wednesday at what we call our NEMG meeting.2) Disucss personally with Dr. Neuro 3) Decide what our best strategy would be.
I know that you are a wonderful advocate for Trevor. Please hang in there, and I promise that I will try!
Wednesday is here. And I except I'll be on pins & needles til' I hear further...