With a side of Mayo

I don't like mayonnaise, but I married a man who believes sandwiches are naked without mayonnaise.

Will's first taste of Mayo.

It is funny that we have been raising our kids with the idea of asking for mayonnaise on the side.  Some like it and some don't.

Similar to our sandwiches, we have needed some Mayo on the side.

Since 2012 we have visited the Mayo Clinic in Rochester, Minnesota at least twice a year.  We visited January, March, April, May, June, July, and August but missed their supposedly gorgeous falls.  The weather has never been a deterrent but getting easy flights form RIC to RST is not the best.  YUCK.

Cheeseacurds, a local wonder.

Mayo gave Houlder a lease on life when no place on east coast could.

And once we learned that doctors could actually confer and plan together, we knew we had a patient for them in Frazer.

It has been a gift and responsibility -- lots of vacations in Rochester -- yee haw!

Prepping for EEG

My last blog post was two years ago when we learned from four months in patient at NIH that Frazer has a seizure disorder.  Two years later, off all seizure meds, they have abated.  No more seizures.

5 years ago Frazer had a slew of medical unknowns and knowns.  Some dismissed by locals and many had been unnoticed.  In this time a dilation was found in his spinal cord self-corrected (rare),  his cerebral tonsils, which were hanging into his spinal column requiring a decompression brain surgery but which HE opted not to have the surgery, have also self-corrected (rarer).

His short stature for which he has received different treatments has fallen away.  His bone age still lags behind by 2 years which means his growth plates are open and bones are growing.  As he squeaks closer to 17 every day than to 16, that is good news.

Finished and having ache and onions rings before we head to RVA

We know that his ascending aortic valve and his main pulmonary artery are dilating.  He may need medications or surgery, but for now observation is all we need.  Locally, in January, the dilation was dismissed despite genetic mutation he has that suggests that this could be problematic.  If Frazer has significant sharp pain in his heart, we need to move.  It could be his aorta separating from his heart.  Slow motion here could be fatal.  But, they encourage him to keep running and swimming. And, they are not dismissive.

The list goes on for the Fraz-man.  But, it has gotten smaller, mostly, while a few new things have jumped on board.

We are in process of getting the big guy checked as well has he fits the profile on having the cardiac challenge.

I still am not a fan on the condiment mayo but without a doubt, having it on the side has been a big deal for our family.

"'Cause there are stars up above

We can start moving forward.

Lost in my mind.
Lost in my mind."
Lost in my Mind by Head and Heart

Easy to get lost in my mind as Porter went home a month ago.  William has been exceptional Dad having all three boys to manage.  It has been decades since I have experienced this degree of independence and reflection.  I am prone to ponder the ways in which we will move forward as a family.  As many other families, we are in transition.  Frazer and I will hopefully return home in two weeks; Houlder and Dell will leave for their respective schools in a few weeks; I will need a school for Frazer; and I will homeschool Porter.  
 
Swimming in planning.  

What it will look like when when we head home the first week in August?  Will we stay in our house or move to the county?  We will need to apply for SSI and school options for Frazer.  An IEP (individualized educational plan)?  City or County?  Fairfax or Montgomery Counties?  Affording a private specialty school for Frazer?  Leave the East Coast?   

NIH which has been a wonderful limbo.  There have been answers which have led to more and more questions.  Frazer lives an examined life pleasantly chatting with all inquisitors.  I have sought resources and ideas to best continue to help him. 

Frazer does not have Childhood Onset Schizophrenia. 

Good news.  But news that I hesitate to celebrate knowing the kids who have this disorder suffer mightily.  We dodged this diagnosis and landed another one.

Frazer has Complex Partial Seizures which are on the epilepsy continuum.  They are moments or few minutes in which Frazer’s spaces out — not grand mal seizures.  He loses track of anything that happens during that time.  Seizures occur in more than one part of the brain and can be the cause of the voices and hallucinations he has been having.  He has now been on the anti-seizure medication for two weeks and reports feeling different.  He appears more present.  He also reports hearing and seeing less voices.  He remains happy, engaged and fun.  Here is an explanation.

With Porter’s departure, I have been able to spend significantly more time with Frazer.  He has attended late afternoon camp at the INN which has involved crafts and games to theater performances.  He has had fun.  It has been nice to visit with him on the weekends, and we have been cooking and playing ping pong.  Neither of us are skillful at ping pong. 

Frazer does not have this genetic syndrome they were testing.  I am not sure that the doctors were disappointed by this but they seemed surprised.  We found he does have a bilirubin issue, called Gilbert Syndrome, which will only effect him should he ever need chemo.  His GI issues are improving tremendously.   We are waiting for some immunology test results but those should net nothing other than re-immunizing for Hepatitis B. 
 
Our plans, what we will do, involve many moving pieces.  For now, we celebrate a miss and begin to understand how to proceed with these seizures.  

We are hopeful for Frazer’s life.

The Update on Frazer, Star Date June 25th, 2014

The Fraz Man.  A well-loved boy if ever there was, there was because what's not to love.

Here we are five and a half weeks into our time at NIH with Frazer in the study on COS.  One-third of patients in study end up not having COS diagnosis.  Frazer remains clinically "undiagonosed," not showing signs of psychosis.  The doctor is extending his wash out phase -- the period without meds -- another two weeks because two and a half weeks into this wash-out they are noticing some odd behaviors.


There are some complications.  What's new?

Genetically:
The team is testing for two specific genetic syndromes which may account for some of Frazer's behavior and other physical issues.  Of course one of these syndromes has only 50 known cases in the world.  Pretty "rare."  However, at NIH, we have met people who are the only two known cases of a genetic syndrome.  As Porter said after learning this, "I guess 51 is not a big deal."  Results of these are about 4 plus weeks out.  Should he have one of these specific syndromes which would include hallucinating and hearing voices, Frazer then would no longer be in the COS study long term.  That does not mean NIH kicks us to curb without a solution.  And finding meds could take 4-6 weeks.  But, it means his condition does not fall under the psychiatric label even though some symptoms fall there.

Liver:
NIH likes blood.  Blood draws are frequent and after several weeks of liver numbers being off, it was time to call in a pediatric hepatologist.  She was great.  Apparently one issue is that he has received his Hep B vaccine but his blood shows no titers for that.  Of course of numbers can mean Hepatitis and a few other things.  More blood draws, waiting for more tests.  And now a call to immunology to figure out about titers.

Neurology:
A routine EEG showed electrical activity that is suggestive of Epileptiform Encephalpathies.  He had a 24 video-monitored one, and they are still digesting that data.  What this means is unclear at this point.  It could account for certain things, be ancillary information or develop into something.  Previous EEGs dating back to his infancy showed normal activity.  The 24 hour one was done without meds on board and after two weeks of wash out.  It is fair to assume he did not have meds interfering during EEG.  Neurologist is also geneticist.  She observed and found some of same  neurologocial oddities as specialist at Mayo.  Together, with other things, led to genetic testing.  Neurology is not finished with him.  He will have a 12 hour sleep study Friday night.  He gets to move to the sleep hall, but one of his nurses travels with him.

GI
Well, the GI specialist is helping with some life-long challenges Frazer has had and we have not had any progress with since he was a toddler.  She is retesting for celiac's and some other things as well.  We hope to leave with a plan here too.

Psychiatry:
Frazer is not presenting with psychosis at this point.  Voices and hallucinations are not being questioned.  There is something called prodromal schizophrenia.  Frazer may have this.  Medication would be needed for that.  It is similar but does not clinically meet COS.  There is a study for that as well but should he have a genetic syndrome, the symptoms fall under that category.

He may have a psychiatric disorder the has elements of several different disorders making his diagnosis multidimensional not singular.

These area is gray and unclear, and treatment is still important.

Anti-seizure medicine can be anti-psychotic medicine. 

The tangled web Frazer weaves.  He is still happy on his hall.  He still goes to school three hours a day (there are four kids in group and 1 teacher: 2 students).  He loves having his kindle for an hour every night and has watched Frozen every day since he has been here.  We visit daily and try to read with Porter for an hour but often they just watch a movie together.  Playing games is difficult as many of his behaviors are unkind.  He is definitely more aggressive with me and his main nurse.  It is something.

William and I are grateful.  He is getting thorough care and the folks who interact with him truly enjoy him.  He has rec therapy, art therapy, pet therapy, exercise, and school.  He picks his own food off menu -- pasta and mac and cheese every night.  Not saying it is good but he wants it.

We are on the course until the train gets us off at a station in which he can move forward at home with a plan -- a five year and possibly a ten year one.

Annapolis -- Amazing Grace

State Capital of Maryland, home the Naval Academy, and a sailor's gateway to the Chesapeake Bay, Porter and I recently spent a Saturday in Annapolis invited by some Richmond friends.  Porter and I had a wicked good time with our friends, the Cantrell's,  who shined a spotlight on fun and brought a a great deal of happiness to Porter.

Caley's dad is a retired Rear Admiral and a delight at 86.  Admiral Shaffer touched my heart as he engaged with Porter and shared his knowledge and nautical antiques with Porter.  Of great interest was a antique flare gun.  Admiral Shaffer took us over to the "yard" where we watched a recruiting video for the The Naval Academy.  Porter was not ready to sign up, but it captured his attention.

Afterwards we headed to LeJeune Hall to watch some swimming.  Georgia was finishing up a week of Navy swim camp.  Porter and I watched swimming which I am used to doing but Porter rarely sits in the bleachers of a swim meet anymore.  He behaved well enough while we watched the swim camp finish up with a swim meet between the Blue and the Gold.

We had a tour quick tour Bancroft Hall and had lunch there before heading the gift shop.  Bling, bling, bling!  Caley spoiled Porter by getting him a Navy swimming tee shirt.  His mom caved and got him a Navy pillow pet which Frazer has.

Next up was the Naval History Museum, Preble Hall.  Wow!  Pretty thorough history of our country's early days as naval warfare became a part of our way of life and the artifacts really interested Porter.  He particularly enjoyed the swords and weapons.  Admiral Shaffer demonstrated such kindness as he shared stories with me and wisely understood that Porter would look at what he liked -- not listening unless piqued.  I appreciated Admiral Shaffer's sensitivity.  He was a gentle soul reminding me of my late maternal grandfather, The Hon. William Bruce Evans, who was a Lieutenant Commander in the Pacific during WWII.  The second floor of the museum is filled with incredible deck/yard models of ships which were built concurrent to the ship being built.  There was an entire section devoted to prisoners of war who designed and constructed, from memory, models made from scrap food bones.  It was truly remarkable. We finished our time with a driving tour of the yard.

Afterwards, we headed to Admiral Shaffer's where Caley and I relaxed looking out onto the bay while Sean took Porter on an excursion.  Bottle rockets and quad copter -- Sean spoiled Porter rotten and they both loved every minute.  Sean is one of those friends who steps up.  He has given Dell summer employment and is teaching him a ton about commitment, hard work and recycling.  His kindness to Porter turned this summer around for the little guy.  That quad copter has become Porter's way to share with other kids at the Inn as well as show off.  The huge two story atrium has had many adults stop and admire his flying abilities.

Admiral Shaffer took us all to dinner as well as Caley's brother Doug and his daughter Genvieve.  More fun, great food, and feeling welcome, Porter and I relaxed.

As we headed back to Bethesda, Porter and I reflected on the love the Cantrell's and Shaffer's shared with us.  We felt a greater sense of longing for our family.  It was a longing based on knowing family and love, not of isolation.  We had a chance to bear witness the banal parts of everyday life that combined with the whole and with kindness can really make things better.  Our gratitude lingers.

So many people have reached out to us as we manage our time apart.  It is an odd existence.  I went from managing three kids daily and one remotely to managing only one kid daily and two remotely and one I can visit.  A chance to be in the midst of family, to be generously treated to laughter and fun is an act of grace.  I think it is easy for kids to experience grace -- Porter was not conflicted about Sean's and Caley's gifts.  I had to mentally let go and be in that moment -- of not fighting off kindness.  In many ways, so much feels out of control.  Watching things unfold for Frazer, knowing Houlder and Dell head to school in less than two months, missing our pets, our home -- William -- the natural force of motion rolling ahead.  While Porter and I are in encapsulated in life here, for a day we had grace and I am bringing that with me as much as possible everyday.

COS -- it is not just an algebraic term.

Childhood Onset Schizophrenia. 

The simplest thing to say would be schizophrenia in kids that comes on before age 13. 

What I knew about schizophrenia could be added together fit on the head of a pin and even then it was false. 

From intro psych I had a memory of it developing -- rarely -- mostly in men in their early 20s.  This is false.  Schizophrenia effects 1% of the population and effects men and women equally.  General Information can be found here.

From the fallout of deregulation in the 80s, I knew public mental hospitals/institutions closures had increased the number of homeless people who had schizophrenia.  I believe the fact lies somewhere between true and false.

And, I had learned some where is my research for uncovering what was wrong with Houlder back in 2011, that there were schizophrenic patients who had PANDAS -- not schizophrenia.  Read here.

Most of what I knew about schizophrenia was incorrect or foggy.

I have met a parent whose professor father developed it when she was a child.  I learned a bit more but her descriptions fit most of what I had assumed and learned were false.  Many homeless people need mental health support -- as would I -- if my home were the street.  And, if your child does not test positive for PANS or PANDAS -- maybe the psychosis is real.  Until this time, my life confirmed what I knew about schizophrenia.

I never knew there was schizophrenia that begins in childhood.  COS is rarer than schizophrenia.  1 in about 40,000.  It is not the same for every kid.  Every kid who has imaginary friends does not have schizophrenia.  Quirky individualism is not a path to the nut house.  And, COS may exist with many other labels.

It is not easy to define.  There is not a singular gene sequence.  Meds work with varying degrees of success.  Getting treatment after first psychotic break is best. 

If you want to know the most about COS, read this.

It seems easy to launch into a spiel about the importance of mental health advocacy and the need for more psychiatrists, psychologists, and LCSWs.  It seems easy to seek alternative diagnosis or even embrace the disorder as part of neuro-typical behavior.  The reality is that living with this disorder is case by case as much of health care is.

It may be normal for a person to feel powers that don't exist but if his/her life is in jeopardy because of these actions, should we respond?  I believe yes.

Do I want my child to take psychotropic drugs?  Not really.  No, but if he needs them to be safe, yes.

Do I want him hurt because what he sees as real and what is real is dangerous?  No. 

Do I want him to enjoy life and be allowed to have his own views?  Yes.

Where the safety versus viewpoint intersection lies is hopefully uncovered in time through genetic research.  But, it will not be in enough time to help Frazer now. 

Today.

Today, he finishes off five weeks in-patient.  He is one and half weeks without psychotropic drugs.  He will go on another 1.5 weeks before bigger assessments are done.  Wash the meds out.  Hopefully his expressive language will kick it up a few notches to explain what he sees and hears in better detail.

Do I want Frazer to have his own perspective on life?  Indeed. 

Is COS an easier to manage as a mental disorder than as math?  Definitely not. 

It is easy to go through the looking glass and down the rabbit hole, but that seems pointless.  A few shed tears, but not buckets. 

We are uncovering as much as we can with the minds of those who know more than most.  We  have him safe and frankly happy.  It is odd to know one's child is happy on a psych floor, but it could be worse.  If we need to medicate to ensure his safety, we will.  We have tried myriad of modalities, diets, and medical and non-western approaches since this child was born.

If nothing else, I hope you will consider a kid who is not like yours.  Be kinder, warmer and more open.  Don't be afraid.  Kindness should not take courage but compassion.

"Love and compassion are necessities, not luxuries.  Without them humanity cannot survive."  Dalai Lama

Hey 19

Today's post is dedicated to the gentle giant in our family, Houlder, who turned 19 on May 31st.  He spent his day at the Inn with us visiting Frazer and sharing a very small bed with Porter.  He also graduated from the Collegiate School on Friday, June 6, 2014. 

On May 30th, Will and Houlder drove up to the Inn arriving around 10pm -- just after our return for the Nats game about which I previously posted.  Porter was over the moon showing the off the Inn and chattering endlessly.  After being away from Houlder a couple of weeks, it was easy to notice the man he has become.  From the attachment to his iphone to receive all birthday wishes to his slightly less than enthusiastic responses to Porter, Will and I chatted about how he continues to improve as his "normal" young adult behavior begins to show through.  It is pleasant to see.

Birthday breakfast was made in the community kitchen by Porter with love.  We will leave it there as Houlder gifted Porter by eating a few.

We visited Frazer for a bit and hit the movies to see the new X-man movie.  Eh, but we toured downtown Bethesda, visited famous Georgetown Cupcakes to get some treats, and hit the bookstore for a few "gifts."  More visits with Frazer, dinner, games, the day ended with people hitting the hay by 10pm.  Not typical for 19, but as far I figure, we rarely do typical.

The next morning William and Houlder left early to collect Dell from St. James.  The three men began their man-summer until Porter and I came home the 5th for graduation festivities.

A better weekend could not have been scripted.  Lovely mild, sunny weather allowed for a comfortable and gorgeous day.  Will's parents joined us.  It was just great to see these kids we have watched for 13 years.  And, for us, it was such a special moment.  Two years ago, when we returned from Mayo, we could not allow ourselves to think Houlder would be able to make up lost work and graduate with his class.  Hurrah for him!  No tears at this time as we are tickled and delighted.  It is such a great victory for Houlder's tenacity.

Houlder will spend the remainder of his summer coaching swimming for the Country Club of Virginia -- a Southampton rival.  He has a bench to finish from his senior project which will be in our kitchen when the second one is completed.  He has friends to spend time at the beach.  And, he has Kenyon waiting.  He was delighted to tell me he had received his kenyon.edu email address and update his FB photo to a picture of Middle Path.  It feels like his life is commencing.

William and I are grateful for his persistence and kindness.  It feels like his life is front of him.  Who would have thought two years ago?  Hey 19

Photos are not uploading.  Sorry.

The Nats

Another great gift of the Children's Inn -- club seats at a Nats game Friday, May 30, 2014.  A kind donor had shared awesome seats.  Off Porter and I went after visiting with Frazer.  Porter had his first Metro ride and went to his first major league baseball game.  Peanuts, sodas, fries -- he saw a few homers and the Nats beat the Rangers.  It was a great night capped off by Will and Houlder arriving about an hour after we got back.

Porter's first Metro ride -- little unsure of at first.

View from the club section.

Necklace bling -- made from a baseball.

Attempt of selfie at game.

Beautiful stadium and night.