Luna’s Story: Update #2 – Never. Give. Up.

A 6-minute video.

How can a 6-minute video video catalyze so much activity?

1:30 into the video I see one process happening in Luna’s brain; the happiness in her eyes melts away while fear and terror are evident as her brain struggles to stop a raging electrical storm.

After a 75 sec complex partial seizure,  a separate process is evident: Infantile Spasms which clusters for several minutes.

It is a remarkable video, one that captured her seizure disorder at a very early stage, and before almost all mediation.  I am not sure I would have been so insistent Maria continue to seek second opinions after the Norwegian healthcare system more or less gave up on Luna.

If you are unfamiliar with Luna’s story, here is the first post from November 2014.  I want to share some of the highlights of her journey in this post.

Nearly 6 months after the onset of Luna’s epilepsy, she received her first 24 hour VEEG.  Prior to this, it was only short EEG’s without synchronous video.  By this time, courses of steroid and hormone therapy (synthetic ACTH) were tried with some effectiveness, but almost immediate relapse upon completion. Luna was on several conventional anticonvulsants and Sabril.

If they captured the overnight VEEG data before all this intervention, what might be different?  Difficult to say, but very interesting to the point of heartbreaking to consider.

MRI impressions were normal and did not correlate with the clinical presentation.

Finally, negative targeted genetic and metabolic testing rendered Luna’s case more or less closed in Norway: etiology unknown.

Take the pills, accept her as she is.  She will be disabled, was Maria’s translation of what she was told.

Luna 11-6-2014

I advised her: Do Not Give Up!  I always felt there was hope for Luna.


Impressions from early EEG tracings found epileptiform discharge activity in both hemispheres, but more in the left hemisphere, and very close to the midline of the brain and almost always with overweight and pre-dominance in the left hemisphere.  Often there was bilateral slowing.  The slowing was frequently found to a greater extent in the left hemisphere.

To me, the remarkable video was a sign that all the generalized activity could be irrelevant if there was a focus discovered.  This theory is difficult to prove given the focal events ceased after the steroid therapy.

An analogy:  Imagine if you were spraying water mist or hair spray on your child’s head.  And you were standing on their left side spraying towards the head around ear level.  As you spray, you move the spray nozzle around, and as you get near the top of their head some of the spray easily falls on the other side of their head.  At first, it would be clear that some of the spray from the left side fell on the right side.  But if you just never stopped spraying, after a while it is impossible to determine if you sprayed some from the right and some from the left independently, especially if you were brushing the hair during this time.

Maria began looking outside of Norway for help.

Helsinki, Finland has a well-known comprehensive epilepsy treatment facility.  Maria engaged the doctors there as did I. Uninterested, they referred her somewhere else in Sweden that was not a good fit for Luna.

2014 began with a trip to Bonn, Germany.  The financial cost was high.  But, the emotional toll was higher, as once again negative MRI findings ended the investigation despite the presence of a focus in the left hemisphere found in a long-term VEEG.

Dr. Sassen reviewed the early videos and agreed about the focal nature of the episode in the one very remarkable video.  Why then did he not recommend more diagnostics?

Luna was weaning steroid therapy during this time and was experiencing seizure control; so no seizures were captured during the VEEG.  This lack of clinical seizures was likely to key reason additional diagnostics were not performed.

I remember the defeat in Maria’s words in emails, the misery, and emotional turmoil in the family.  Chronic seizure disorders in young children are well-known for disintegrating the family unit.  During this period Maria realized she had a marriage built on sand not rock.

By the summer of 2014, Maria was in contact with Dr. Von Allmen and Children’s Memorial Hermann Hospital here in Houston.  In parallel, Dr. Simon Harvey from the Royal Children’s Hospital Melbourne, Australia, also reviewed her case.

Dr. Harvey insisted she get a PET scan.  In a matter of days, Dr Harvey in Melbourne Australia ordered a PET scan for a child from Norway to be performed at St. Thomas hospital in London, England.  You can’t make this up!

The results indicated she should be a good candidate for surgical intervention. Finally, I felt like she broke through an invisible barrier in getting help for Luna.

Where can Luna receive such surgical care?

It wasn’t long before the USA became the only real option and Children’s Memorial Hermann Hospital was the natural selection.

They quoted $125,000.00 for investigation and surgery, far more than anywhere else.  But, Luna could get quick access to care here and could not elsewhere.

Maria created a fundraising page through one of the internet-based fundraising sites.  The response to Maria’s call for help was dramatic and surprising.  God’s plan indeed.

Like every step along Luna’s path, accessing pledged monies wasn’t without significant challenge.  Global political tension between the US and Russia made transferring Russian monies difficult with credit cards and wire transfers – the kind of transactions needed in this situation to quickly fund the planned events.  Her friends came through with great success!

We don’t know all the donors, but whoever you are, you played a vital role in changed lives.  Thank you for your kindness and generosity.  Not only did you help change Luna’s life, but you illuminated a potential path for others like Luna.

A pause.

Maria didn’t have the necessary funds CMHH demanded.  And, yes, ‘demand’ is the correct word.  Global political tensions and resulting monetary policy restrictions delayed the transfer of some pledged funds.

What to do?  Make the trip, or wait until she secured the funds?

I remember telling her “Just get here.  And, we will figure out the rest.”  This was our moment we have been waiting so long to happen.

Despite many setbacks, roadblocks, and barriers, Maria and Luna made it to Houston.

Austin-Savanna Third Birthday-17

After evaluation and consultation with Dr. Tandon , the chosen path at that time was a TPO resection/disconnection.  The hope was that remaining cortex was not implicit in the epilepsy.

A hemispherectomy was discussed as the likely procedure to provide the most control, but also with the most consequence.

Luna-3 Luna-2 2nd pedi epilepsy reunion-11

The procedure had a remarkable positive effect on Luna, but unfortunately it was clear she needed more help as her epilepsy continued uncontrolled.

Devastated, Maria returned to Norway with Luna to collect her emotions.  Here was a post I made just before she departed.

Emotionally knocked down, she stood back up.

Maria reorganized her life and relocated to Houston seeking further care for Luna.  She secured a job such that the company paid for the transfer.  She leased a house, and a car.  And began engaging in all the things that go along with living in the US.

[This person, this Mom, Maria, has a wealth of courage and love in her heart.  She used to get tired and say “I have no forces left”.  I always chuckled at her word choices, but she did have forces left.  She is human yes, but has superhuman ‘forces’ in my book.  As I reflect on all she conquered to get real help for Luna, our journey with Savanna pales in comparison.]

Luna diagnostics second round CMHH 2015

American medical insurance in place, a new round of surgical evaluation was initiated.  The results were confounding.  Discharges still in the [connected] left and right hemispheres.  Dr. Von Allmen recommended a larger resection, likely including some motor cortex.

Dr. Tandon wasn’t confident that would help but was willing (as I understand it).  He recommended a palliative procedure with the intent being to slowing down the epilepsy progression and perhaps illuminating the focus more clearly, without serious consequences.

The discussion devolved to a point where Maria was left with less than ideal confidence in the plan of care.  Dr. Von Allmen, frustrated, referred Luna to another pediatric facility.

Luna’s case I guarantee while perhaps not one-of-a-kind, is extremely unusual in presentation and overall path of care.

Using the MEG study from Houston, the team in Austin (Dr. Clarke and Dr. Lee) went to work.  They performed another 24hr VEEG and installed several depth electrodes.

The Austin team ultimately followed a similar path suggested by the epileptologist in Houston, which was a larger resection.

Prior to the surgery, I heard discussion about the ‘incomplete’ or ‘not optimal’ nature of Luna’s first surgery.  Parts left connected that ‘were missed’ according to accounts of discussion between the Austin team and Maria.  I struggled with the motives of this discussion.

These statements sounded like conjecture, a moment to elevate one’s self without any responsibility. That would soon change once they too operated on Luna.

I think in general Maria felt discussion with the surgeon in Austin was what she needed most.  I was not present, but the account of the conversation sounded very positive and reassuring.  It sounded extremely specific in what was ‘done incompletely’ previously, his plan to ‘fix it’, and a near guarantee Luna would be ‘seizure free without motor skill loses’.  Who wouldn’t want that in this little world, right?

[Luna’s case unfolded such that it appears Dr. Tandon was likely correct in his assessment during the second surgical consultation here in Houston.]

On August 14, 2015, Dr. Lee per his language, ‘completed the TPO disconnection’ in Austin, Texas at Dell Children’s Hospital.  Luna is such a strong little girl!

Luna Second surgery

Unfortunately, Luna seizures started again very soon after this surgery.  And Luna experienced severe hemiparesis, even 4 months post-op.

A corpus callosotomy (the palliative procedure rejected in Houston) and a VNS was implanted for an extra measure of control during a third surgery shortly after the second one.

After the corpus callosotomy, the seizure presentation was remarkably focal in nature. Only right arm and leg involvement during the events.

This was a big and positive change!  And it indicated, the right arm and leg were still connected to the motor cortex to some degree.

[Why the palliative procedure?  After all the diagnostics in Norway, Houston and Austin, no one could say for sure that the discharge activity onset was only in the left hemisphere.  This procedure could positively determine this with minimal deficits.  This procedure can stop or slow the progression of the epilepsy by closing the pathway between the hemispheres.  This procedure won’t stop seizures, but it can stop focal seizures from generalizing.]

The fourth round of evaluation revealed what we all prayed for all this time:  All discharge activity was localized in the left hemisphere!


Now, it appears complete hemispherectomy is Luna’s best option.

January 29th, 2016 Luna underwent total left hemispherectomy, during her fourth surgery.  This radical surgery enrolls Luna into a very small sorority of patients worldwide.

Luna Feb 2016-8985

[Epilepsy surgery timing is a research field all its own.  The mantra is ‘the sooner the better’.  But a misstep can lead to unintended disastrous consequences.]

What does this mean for Luna – a hemispherectomy?  No one really knows.

When you study the situation, the outcome is a spectrum, with underlying etiology being a big factor.  Therapy methods and theories are evolving as well.

Medical science can’t tell us why Luna’s left hemisphere produced epilepsy.  In this light, Luna, and others, are ahead of science to some degree.


Luna stroller february 2016

For sure, it means Luna will function with half a brain, unlike you and me.


It also means Luna now can achieve her best ultimate outcome with the greatest chance at living seizure free and possibly medication free.

After 13 months here in the US, Maria is starting a new life.  She remarried and is moving to Dubai, UAE with her new husband Roman and plans a return to Norway.


Luna Feb 2016-9057

Luna Feb 2016-9038

Luna Feb 2016-8980

Romans 8:31  “What, then, shall we say in response to these things?  If God is for us, who can be against us?”

I cannot lie, I found this time of Maria and Luna’s departure quite emotional.  Watching that remarkable video brings me to moment of profound clarity.  Where would Luna be today had I or someone else not responded to Maria’s call for help in the summer of 2013?

Thank you Lord for leading me into this family’s life.  Thank You Lord for inspiring Maria to post the videos of Luna when she did.  Without Your guidance and leadership, all of this would not have happened.

All of this from,

…a 6-minute video.

-Luna’s friend

6 months seizure free…

Six months ago today, Savanna underwent a complete TPO resection led by her neurosurgeon and epileptologist, Dr. Tandon and Dr. Von Allmen respectively.

The process started very early in the morning. About 3 pm we spoke to the epileptologist. Tears were shed. Hugs all around. Then we did it again at around 5pm with the neurosurgeon.

Each day, I thank the Lord for giving us a fresh new day, and pray it will be filled with happiness. (I don’t think he hears me everyday?) Each day I also ask for forgiveness for my sins of yesterday and His help to be the best husband,low res -7437 father, and friend today.

What has changed since the last post at 4 months?

low res -7647Savanna and Austin turned 2 years old on September 20th. The picture to the left is very different than a year ago! A couple of days prior, we participated in a Memorial Hermann Hospital marketing campaign highlighting the benefits of MEG technology. Our local ABC13 filmed the event and interviewed us and our doctor. The 90 second news clip is here. Rebecca’s full 12 minute interview resides on their website.

Foremost on my mind today, is that I don’t believe she is having seizures or even epileptiform activity, but I cannot say this for certain. She has reached 6 months without a clinical seizure that I have witnessed. Most doctors and surgeons would harbor a guarded optimism about her future, but at the same time would suggest this is a big milestone given the circumstances.

She has almost completed cutting her two-year molars. While difficult, it has been sweet to see her struggle through this period with relative normalcy. She simply could not experience this in the past.

She walks around the house at will. 2 months ago, she could only take a few steps, seen here.

She has learned to stand up on her own, without help from furniture.

She can safely navigate steps. We do not knowingly let her do this alone.

She can focus on an activity for more than 3 minutes regularly. This has been a huge step forward with regard to self-regulating her behavior.

She can point with her index fingers and can operate simple cause-effect toys.

She has started to deliberately put toys into a container, in a very controlled environment.

She can roll over somersault style, a bit sideways, but she can do it.low res -7658

She understands when you are not looking at her. For example, when you holding her while talking on the phone, she will deliberately put her hands on your face and try to turn your head to look at her. Or, she will ‘look around the corner’, to see your face. When she does this to me, it feels great as Savanna is still decidedly a Mommy’s girl – if Mommy is in the house. This indicates increased awareness and it is exciting!

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All of these milestones are wonderful to watch. This 6 month milestone is a breath of fresh air. It is reinforcement for me that the surgery, the hard work every day with her sensory diet, and the physical and developmental therapy, is working together to allow her to thrive. When I reflect on the what she has learned and how quickly, I believe the therapy has helped immensely.

It is not all cake and ice cream though.

While she is eating well, she is very finicky about what she eats. And, she still won’t reliably drink thin fluids. She will not suck at all. This is very frustrating. Yes, you can sit and spend 1/2 hour forcing her to drink 3-4 ounces of fluid if she is really thirsty. But she will aspirate – a lot. Right now she is very healthy and seems to clear her lungs well. I am not without pause here, as throwing caution to the wind is dangerous. All it would take is a moderate cold combined with aspiration of fluid filled with bacteria (such as milk or formula) and you could have a serious problem. I will be trying another feeding clinic in the coming months.

Now that she is walking, the visual field cut is becoming more clear. She has really hit things hard where it was obvious she was walking and just didn’t see the table or corner of the wall just off to her right side I know these incidents will dissipate as she learns to compensate. But, it hits really home realizing her visual field cut is large enough to most likely prevent her from obtaining an operators permit for a vehicle. I know some of you might think it is odd that I would think about that or mention it now. But she is doing so well now, that it doesn’t seem out of reach – much like it would seem for a normal 2-year-old.

I have noticed Savanna ‘pausing’ at times, and so have the therapists. I say ‘pausing’ not staring because while she is paused, she is not focusing on what she is staring at. You can put your hand right in front of her eyes with no response. These events don’t seem to affect her motor function and are short. She does always seem to respond to the sense of touch. Is it partial seizures I am witnessing? Probably not, but I am not sure. I am sure we will catch some of these events on an upcoming 23hr VEEG.

She has stopped saying the consonant sounds she was saying at 4 months. She was saying about 5 sounds with and without prompting. Now, she has other noises that include sounds like what you might hear ‘Curious George’ make, and a growling sound. Is it a regression? Is she intently focused on her new-found independence being able to walk, that this has been sidelined for now? Or is it…. something else?

She flaps her hand a lot when she is excited. It looks suspicious. Is she really saying ‘Hi?’ Or is it…. something else?

She has a fascination with putting her finger into holes. It dominates every therapy session and at times takes away from the session. Sometimes, without a fidget toy that has holes in it, I can’t even get through a therapy session. She finds dimples on plastic toys that looks like holes. She is fixated on finding assembly screw relief holes on toys, cloth loops, etc. She can be obsessed with inserting her fingers into such holes. I have to say the last week this activity has lessened. It was cute at first. It enabled her to regulate her behavior somewhat at first too, so I encouraged it. Is it just a developmental stage? Or is it… something else?

I recently took them to the pediatrician for the 2 year wellness checkup and flu shots. I completed the M-CHAT (Modified Checklist looking for Autism in Toddlers) and she scored really high for ASD. Because I have done my homework, I knew this was coming. Yes, she is delayed, but the loaded questions regarding ASD are not about development, they are about ASD. Her exome sequencing indicated a significant chance for ASD. And, ASD manifests in significant percentage of children diagnosed with Infantile Spasms. An evaluation is forthcoming in her near future.

If you were to see her today for just a short while after not seeing her for some time, these things I mention would not be part of the memory. I believe the questions about ASD are challenging to definitively diagnose or dismiss at this stage. That said, I cannot ignore what is happening or hope it just ‘goes away’ as that would be foolish on my part. I cannot ignore the science that I have subscribed to thus far. I believe early diagnosis and treatment is the best course of action.

She surprises me with her development at times.

She inspires me as a leader daily.low res -7584

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Her encouragement, although ambiguous at times, motivates me to lead her to success versus micromanage her challenges.

A short note about the rest of the kids.

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Tristan started Kindergarten this year. He loves it! He has always loved to learn and thrives in the structured environment. He is playing soccer at the Y this fall and is doing quite well. He recently ran in a Boosterthon FunRun race and ran about 2 miles. Mommy and Brandon cheered him on.

Brandon is something else. On the cusp of turning 4 on October 7th, he continues to say really off the wall funny things. He has always done this, but it continues to get more entertaining. Right now, he is participating in PRE-K4 soccer at the Y – (a very questionable use of funds 🙂 ) His first game, he just walked right beside the coach and held his hand. His most recent game, he at least ran and was able to kick the ball. He is very shy as it turns out, and I guess in Tristan’s shadow I didn’t realize it. He is protective of Savanna while being playful in way that she just loves. Hearing that deep belly laugh from Savanna when Brandon is playing with her is wonderful.low res -7492

Austin is doing great. He is so intent focused on keeping up with Brandon during the day, and the ‘big kids’ at other times. He has a lot of new words now and is growing up fast. It feels like his first year was just a blur. I am glad we have some video to reference!low res -7483

Ruth, our Au Pair from Australia, is working out really good. It has enabled me address a hernia repair that was long overdue. Our daily routine is working out well enough for me to start working out again and it feels great. Rebecca and I have enjoyed a couple of date nights – we almost forgot what that was like. Ruth has really been good for our entire family.

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