Luke Lorton Treatment Fund

$33,230 of $30,000 goal

Raised by 226 people in 24 months
Created May 18, 2017
Please see the below letter that was sent from Mike Lorton, Lukes father.

Luke has recently been diagnosed with a medical condition called PANDAS.  Apparently, this happened when strep bacteria crossed the nasal/brain barrier and subsequently entered his brain.  From there, it encased itself in small cysts (mimicking brain cells) which caused his immune system to attack his basal ganglia.  This is causing inflammation and damage to that part of his brain - which is causing a multitude of motor and cognitive issues that resemble OCD, TICS, Tourette's, as well as constant seizures, falls, anxiety, spatial recognition problems, etc. 

He was removed from school last month and continues to require 24/7 monitoring at home.   My wife has quit work to be home with him on a daily basis.

Unfortunately, our  insurance has fought us the entire way and refused to cover almost everything including the key (IVIG) treatment that his Pediatric Neurologist (Urgently) ordered back on April 19th. 

Although the outcome is positive, the treatment can include a lot of serious side effects like anaphylaxis, seizures, heart problems, nausea, vomiting, headache, etc.  The actual procedure takes place over 2-days and he needs to be observed and remain quarantined for 2-3 weeks following.

Despite all of our efforts, our insurance still refuses to cover the treatment.  At the same time, Luke's condition continues to deteriorate and we can't wait any longer.  The cost of the treatment can range from $10,000 - $30,000 depending on how many times Luke needs it and this doesn't include the incidentals and unforeseen.  

That brings us to today (5/25/17).  This morning we are so happy to report that we reached our initial goal.  I posted an update a couple of hours ago expressing our immeasurable thanks and I only hope that it is reflected again here.  That being said, because we are unsure of the actual long term costs, we have decided to leave this donation site open for now.  The last thing that we want is for anyone to think that we are being greedy.  Several people have reached out and voiced their concerns that we should leave it open because it offers people an outlet to reach out and help in a way that is beyond words.  We will continue to provide updates as they come along.   We plan to track the costs very carefully throughout Luke's treatment and recovery periods. Although that may take a while, we plan to forward any unused funds to support someone else in need.
Thankfully yours,
Michael Lorton      
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Hello everyone. I sincerely hope that each and every one of you had an exciting and relaxing summer break with family and friends. I am happy to report that the last part of summer has been nothing short of miraculous for us.

During the last few weeks, Luke has been doing amazingly well. He has recovered at a pace that we never imagined possible several months ago. Following his IVIG treatment in late May, many of his PANDAS symptoms simply vanished, and several others diminished to the point where my wife and I are constantly reminding each other that we are getting our son back. We can clearly see that he is becoming “Luke” again – happy, caring, witty, confident, full of energy and seemingly fearless. That sparkle in his eyes is returning and it is almost hard to believe how sick he was just a few months ago.

Just yesterday, he rode next to me in the front seat of the car on the way to baseball practice. We had several other kids in the car with us and I was fascinated by the level of improvement in his mental sharpness. I could see it in his eyes and hear it in his voice. His facial expressions and quick-witted reactions to the conversation taking place in the backseat were examples of things that had been missing or dramatically reduced since his PANDAS symptoms began. In fact, I hadn’t seen this version of Luke in so long that I believe I was beginning to accept his debilitated behavior as the new normal for him – until now. BTW – yesterday was also Luke’s first day back in school. Even though I’m quite sure that he missed paddling into waves at the beach, I could tell that he was equally happy rejoining his 8th grade friends.

We can’t describe how happy and thankful that we are for Luke’s improving health. Furthermore, we cannot possibly thank all of you enough for your help in all of its many forms during the last 8-months. You made it financially, physically and mentally possible for us to obtain the IVIG treatment for Luke. My wife and I could not have stayed home with him during his isolation, treatment and recovery phases without your help. We will be forever grateful to you and your families.

On a side note, it continues to be absolutely unfathomable to me that insurance companies like Anthem Blue Cross refuse to consider IVIG a necessary treatment for PANDAS. My son is absolute proof that it works. He is not completely symptom free yet. Yes - he could revert back - but he continues to make amazing progress on a daily basis. Most of the studies describe this level of recovery as normal following IVIG. In fact, waxing and waning of PANDAS symptoms following IVIG treatment is apparently normal throughout the first year. Some kids may require multiple treatments and those treatments may need to be performed over several years if the disorder returns. We will obviously continue to hope and pray that this first treatment is the ONLY treatment that he will need. The future is going to remain uncertain. I will keep you updated as time goes by.

PS – We plan to provide an in depth summary of everything that we have encountered with regards to the PANDAS disorder. Our biggest fear is that it could easily affect someone that we know and we want to make sure that we have done everything we can to get the information out to everyone in advance. With PANDAS, proper early treatment is critical to recovery.

Here is a very short synopsis of what we have discovered:
Our medical system is NOT designed to properly diagnose auto-immune encephalitis types of disease. My wife and I just watched a very disturbing movie called “Brain on Fire” which focuses on this exact issue. I would highly recommend watching it. Part of the problem is that disorders like PANDAS mimic other (basal ganglia) disorders (OCD, TIC’s, Tourette’s, Anxiety, Depression, Bi-Polar, Schizophrenia, etc.) and most doctors will attempt to treat them as psyche conditions instead of diagnosing and treating the underlying infection. This delay can result in permanent damage to that area of the brain. This is most likely what would have happened with our son Luke. His symptoms began with minor sleep anxiety and OCD behavior. If we would have followed the initial standard treatment protocols (approved by insurance companies and recommended by inexperienced doctors) he would most likely have continued psycho therapeutic care until his condition worsened to the point of permanent debilitation. This is the main reason that so many children who have developed PANDAS in the last 20-years have become permanently debilitated, because they did not get the proper treatment for the underlying infections quickly enough or possibly at all.

Even though PANDAS-related information is beginning to spread via the internet, most doctors (especially pediatricians) are unfamiliar with the disorder and its treatment. My wife and I continue to research everything on our own. We have asked Luke’s doctors to order special tests like the “Cunningham Blood Panel” (BTW - most of our doctors had no idea that this test even existed). We also sought out and followed treatment modalities from PANDAS specialists located throughout the country because our own local (in-network) doctors were either unfamiliar or inexperienced.

We ran into a ton of roadblocks along the way. From a neurologist who lied to us – claiming that he treated PANDAS patients, taking our money and literally saying “I’m out” when he received the positive blood work results (Dr. McIntosh – Laguna Niguel), to insurance coverage, medical coding problems, blood draw problems, communication issues between doctors, etc.

You need to be ready for a fight on multiple levels. Do not always be “The nice guy,” you will get run over and constantly put on the back burner. Trust me, we learned this the hard way. Many of these struggles stem from the disorder itself, but they also include finances, insurance companies, school districts, work schedules, medical appointments/scheduling, billing, etc. Each of them can create a massive distraction from the main goal (to get your child treated) and they can also add a ton of extra stress on the home front. I can’t say enough about the support of our families, friends and community. We could not have done this without you. Again, thank you all so much for everything.

Gratefully yours,

The Lorton Family
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Message from Michael Lorton:

Hello everyone. I hope that you are having a great summer so far. It has been about 1 1/2 months since Luke's first IVIG treatment and I would like to update you on his current condition.

I apologize for the longer than usual delay, but it seemed like a good idea to wait until we had followed up with the neurologist prior to reaching out to all of you. This also gave us more time to assess Luke's condition on our own.

So far, my wife and I feel like the IVIG treatment was successful. We think that it resulted in a decrease of his PANDAS symptoms by about 50% (AWESOME). A huge THANK YOU to all of you who have helped us make this possible in so many ways... We could not have done it without you.

All in all, Luke has good and bad days, but overall, there appear to be less bad days than before. We shared those feelings with the neurologist last week and he plans to do a second IVIG treatment in August/September. He explained that recovering from IVIG treatment for PANDAS patients is a long, slow process and many of the symptoms will wax and wane along the way before (hopefully) disappearing. As a result, he recommends 3-4 month intervals between Luke's treatments. This definitely makes sense and we have started planning for the future impacts that this will have on him. Of course these are all secondary to his health, but things like school, sports, work, friends, etc will all be impacted again.

As far as a recent timeline, the first week of July marked the end of his isolation period from the outside world. Like I mentioned in the previous update, the IVIG treatment is designed to reset his immune system. As a result, he was very susceptible to catching and/or failing to recover from any/all forms of illness. It also could have negated the treatment and worsened his disorder. Thankfully, it was a success because he stayed healthy in a time when it seemed like everyone around us was sick.

Immediately thereafter, we got our son Jacob back at home. Oh man, what a great day that was. Even though we got to see him at his baseball games, it was heart wrenching and surreal to see him go home with his friends during that first month. A huge THANK YOU to everyone that took him in and to those that offered as well.

During the last 2-weeks, Luke he has progressively returned to many of his regular activities. He has been hanging out at friends' houses, the beach, swimming in the pool, skateboarding, etc. He is having a lot of fun again and that is all exciting to watch. He is still pretty lethargic from the treatment (which is normal) but he is improving and that's what matters.

We are still learning a ton in regards to both PANDAS and IVIG treatment. Nicole is constantly reading and researching studies, forums and online seminars. We are still pursuing a third (Final) appeal with the insurance, but (knowing how corrupt Anthem Blue Cross is) we are not holding our breath. The good news is that some states are now forcing insurance companies treat this condition. Here is a link to one of the latest updates:

I'm not sure if I covered everything but I will keep you updated again when we get closer to his next treatment. Thank you again for everything that you have done. We really needed your help with this and we will always feel humbled and blessed for the outpouring and support.

Your's truly,

Michael Lorton

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Message from Michael Lorton:

Hello everyone. It has been two-weeks since Luke’s first IVIG treatment. Because this type of treatment typically takes (3-4) months to show results (up to a year in severe cases – Luke’s Neurologist says he is the most severe he has seen), I figured that I would wait a little while to update you on his condition.

Immediately following the treatment he experienced some pretty nasty side effects (severe headache, fever, nausea, vomiting and lethargy). Most of these subsided after the first week but he is still gets tired easily. His PANDAS symptoms have also been exacerbated. Although we expected most of these complications (based on available literature), it has definitely been tough watching him go through them.

All of this considered, Luke is maintaining very good spirits. He’s bored staying isolated, but the time that we have spent at home together has been great. Even though he wins most of the time, I think we are all becoming experts at Monopoly, chess, puzzles and cards. He also has a great time playing online video games, receiving phone calls and text messages from his friends and family. We also try to get outside a little every day to play catch, ping pong, skateboard in the street or go on walks.

In the long run, we hope to see a cessation of all the PANDAS symptoms. Most kids are able to achieve this after (1-2) treatments. Some of them require as many as (3) treatments to cure the disorder – we certainly hope that this is not the case.

The IVIG treatment is basically designed to confuse his immune system and stop it from attacking his brain. For about a month, this results in a suppression of his immune system. As a result, we have to continue keeping him isolated from everyone for another couple of weeks. If he gets sick, it can actually reverse the positive effects of the treatment. I want to send out a huge THANK YOU to each of the families that have allowed our youngest son Jacob to stay with them during the last two weeks. We miss him a ton and can’t wait for him to be back home with us.

That being said, so many people have helped us in so many ways. Your thoughts, prayers, advice, dinners, days off at work, donations, etc. have all helped to drastically reduce the load that our family has been carrying. We are forever grateful. I’ll plan to update you again in a couple of weeks.

Yours truly,

The Lorton family

PS- Many of you have asked about the insurance battle. Here’s a very brief heads up. Anthem Blue Cross denied our “Second” official appeal for IVIG treatment a few days ago. This leads us to our last/future “External” appeal. Up to this point, we have provided them with numerous documents/studies, letters and phone calls from our doctors, etc. that support the use of IVIG as a treatment/cure for PANDAS (Here's a link to the most recent study that we provided prior to the last denial - https://www.pandasppn.org/wp-content/uploads/2017/05/IVIG-for-AE-PANS-and-PANDAS.pdf).

Four other major insurance carriers cover this treatment for PANDAS (Harvard Pilgrim, United Health, Cigna and Aetna). The truth is that Anthem Blue Cross wants to treat the long-term psychological effects of PANDAS instead of paying to treat/cure the disease in the beginning. Even worse, they don’t just say NO. Instead, they continue to dangle the carrot (of approval) as in front of us while they waste valuable time playing all of their games. They could absolutely care less about any permanent damage that is occurs (to Luke’s brain) in the meantime. In fact, they have no idea that we provided the IVIG treatment on our own and now they are saying that the “Final” appeal can take six months or more.
Thankfully, we are very thorough when it comes to record keeping and someday all of Anthem’s lies, mishandling and fraudulent dealings will be pursued.

My only advice is to have your kids tested for Strep and retested following every illness/treatment. It does not always manifest with a sore throat so it can mimic many different illnesses. To the best of our knowledge, this is what happened to us. Luke never complained of a sore throat. We have recently talked to a handful of people whose kids have been diagnosed with PANDAS. Most of them have shared the same experience that we have had so far, but they have also provided a very bright outlook. Don’t think that it can’t happen to you. It is becoming an epidemic and it made the cover of “Discovery Magazine” last month ( http://discovermagazine.com/2017/april-2017/hidden-invaders).
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Message from Michael Lorton:

Hello to all of our friends and family out there. Luke finished day two of his 1st IVIG treatment today. We started at 9AM and ended a little bit earlier around 4:30PM.

He is in very good spirits (especially happy to be home) but some of the side effects are a catching up with him. Most of these are considered normal (headache, fever, stomach ache) but we will continue to watch him. Hopefully he feels better soon.

From here, we expect a possible worsening of his PANDAS symptoms for the next 2-3 weeks. Hopefully not, but this is also considered normal.

After that, we will pray and keep our fingers crossed over the next couple of months for a dramatic reduction or termination of those symptoms.

We will continue to keep you all updated and close to our hearts as we move forward.

Always thankful,
The Lorton family.
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$33,230 of $30,000 goal

Raised by 226 people in 24 months
Created May 18, 2017
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