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Tuesday, December 24, 2013

Our Christmas card to you!

As I sit here on the eve before Christmas, it dawns on me that Christmas cards are just not happening this year.  I could list a dozen reasons why but the truth is, it just didn't happen.  Now before all of you black list me from receiving future cards, please know that I love and cherish every card I receive and next year I vow to get some cute darling cards out before Christmas. So this is my Christmas card to you!

2013 was an interesting year in the Murphy house.  January started our year with renewed energy and determination for a year of fitness, good health and charity.  Gary earned the title of Advisor of the Year at his work's national conference.  If he earns that title again this year, they will send us to Hawaii so we are eagerly waiting for the news again this January. He has had a very prosperous year at his job reaching several personal lifetime goals. Gary has also found a passion for fitness through Crossfit and his results have been amazing (if I do say so myself).

I joined J & M Strength and Conditioning where I began working on healing some old injuries through strength training.  Although I've spent much of the year researching treatments, doctors and natural ways of healing the disorders inflicting our children this year, I also started working toward a personal goal of starting a business in essential oils.  I am looking forward to launching this business in January.

Brayden finished the school year in May by earning the status of Outstanding student in school.   In Boy scouts he earned his Bobcat and made a winning derby car.

Brayden finished 2013 by winning the Reflections Art contest at his school in the area of Visual Arts.

Although Brayden's medical condition has left him homebound from school, he continues to make great academic progress.  His love for art and reading have really flourished in 2013 and we look forward to seeing him meet his potential when his brain begins to heal.

Teagan enjoyed her year with girl scouts. I was the cookie mom this year so we had a room filled with cookies in March.

She continued to express herself through fashion.

Teagan finally joined chorus again at the end of the year. She sings all day long in our house and it was a big step for her to get over her stage fright and perform in the Christmas program.

Teagan also bridged to brownies in girl scouts this year.  As you can see, she was thrilled.

For the first time, she was selected as a school winner in the Reflections art contest for photography.

Ellie turned three this year!  It is hard to imagine that she is no longer a little toddler.  She had an exciting year of YMCA classes, Gymboree classes and play dates.  She is such an active fun loving girl and it has been so rewarding watching her grow this year.

In 2013, we had many fun excursions as a family.  We took a break from the winter cold with a trip to a water park.  We all loved the fun and exercise this excursion provided for us.

We took a day to go hiking with the boy scouts in the brisk winter weather.

Gary, Brayden, Uncle Dennis and cousins John and Daniel took their annual backpacking trip in the Smoky Mountains.

In June, we headed to the Outerbanks for a camping adventure of a lifetime.  You can read about that trip starting with this post.;postID=6499771748431410458;onPublishedMenu=allposts;onClosedMenu=allposts;postNum=18;src=postname

We spent the 4th of July in Knoxville, Tennesse, visiting my mom, along with my Aunt Liz and Uncle Al.  We had a blast boating!

In August, we took our annual trip to Lake Michigan for what would be our last vacation in Lost Valley due to the sale of my in laws beloved lake front home.  We were fortunate to have some friends join us for a day.

Of course there was a golf out at Old Channel Trail.

and lots of dune climbing.

Our final trip of the year was to Pennsylvania to see Aunt Julie and Uncle Dan. Ellie had a blast with Aunt Julie at the Crayola factory.  The girls also had a visit to the Peep store.

As I reflect on 2013, I realize there were many good times, many trials and many firsts.  We have had to face the the unthinkable with regards to our children's health. The road ahead of us is long and uncertain. One thing we know for sure is that we are stronger as a family, stronger as parents and strong enough to battle the unknown in our quest for health.

So although we did not send out Christmas cards this year, we hope you know that we are thinking about each of you that have touched our lives in 2013. Whether it was from a visit, card, or simple facebook message, we appreciate each and everyone of you. We wish all of our family, and friends, new and old, a very Merry Christmas, Happy Holiday and a safe and healthy New Year.

The Murphy Family

Wednesday, November 6, 2013

A Dinosaur Tale by Brayden

Recently, Brayden's homebound teacher asked that he write a story.  His assignment for the week was to come up with the characters and the story's problem.  I know it takes him a long time to develop a thought but after 20 minutes of trying to get him to name a few characters I about gave up.  Then he started to twitch, grab his neck and follow a series of other compulsions and tics before spewing out this entire story.  He apparently had to develop the whole story before he could name his characters.  I thought it was really sweet and wanted to share.  Here it is...

"Once upon a time, a Triceratops and a T-rex had a picnic.  The T-rex brought meat and the Triceratops brought plants.  They wanted to share their food but they ate different foods.

The next day, they both were searching for a friend who ate both things so they could share.  They kept looking everywhere.  Then they found a dragonfly and they wondered if it ate both things.  The dragonfly just flied away.

They were in the forest and they saw something run up a hill so they ran after it to see what it was.  They saw a dinosaur that had a long neck, was kind of small, with legs that could move fast.  It was a Gallimimus!

The T-rex and the Triceratops said, "What do you eat?"  The Gallimimus said, "I eat plants and meat."  Then they asked the Gallimimus if he would like to have a picnic with them.  The Gallimumus said, "yes".  Then they all got to share their food.  The End."

Monday, November 4, 2013

An update!

So last post I mentioned that we were headed to New Jersey to see an "expert" in PANS/PANDAS.  The trip went as well as one can go and it was humbling to meet Dr. Trifiletti (Dr. T) and all the brilliance he brings to this disorder.  For Brayden, he added another antibiotic and more lab work.  For Teagan, just more lab work.

The results showed that Teagan had both a current and past infection to the Coxsackie virus, type B, and antibodies for a past infection to Type A.  Type A is commonly known as hand, foot and mouth disease.  Brayden had antibodies forming for Type B. It is interesting how the human body works.  Neither of my children have ever had symptoms of either virus that I'm aware of yet their body is fighting it.  Both were prescribed an antiviral to stop the process.

Teagan's labs showed again many "interesting" things that unfortunately required yet more lab work that is still pending.  She continues to intrigue every doctor she encounters with her lab results and clinical presentation.  Dr. T did a great job of explaining the possible connection to Teagan's fever disorder as a toddler and her current symptoms.  Apparently she has an immune marker now that is common among children battling the fever disorder she had as a toddler.  That is why you pay this man the big bucks, to find connections like that.  His current theory on Teagan is called an "alternative fever response".  Instead of battling infections with a fever, she develops untraditional symptoms to viruses attacking her body.  I'm still learning about this "alternative fever response" hypothesis and hope to post more on it later.  All I know is she doesn't get a fever anymore for any illness and that is not a good thing!

For now, this is all I can provide for an update until we have another phone consult with Dr. T.  He ordered extensive genetic testing, lyme testing and many other tests.  We talk again in 10 days.  The wait never ends!

Saturday, October 5, 2013

Where's the logic?

All the doors in the house slam shut, all the blinds are shut and every light is turned off.  This is a ritual I previously thought was a silly quirk until it disappeared.  Now that it is back, the red alarms are going off.  It is not Brayden, it is his sister Teagan.  Our child that a neurologist recently termed as "scientifically intriguing". As a researcher, that is an exciting label, as a mother, it is terrifying.

I have spoke for the past few months about our journey with Brayden in battling PANDAs.  He is stable at the moment.  Not improving, but not regressing.  He will see a "expert" neurologist in New Jersey on October 14th and until that time, we just hope each day continues without further regression.

As for Teagan, I haven't posted much about our journey with her mainly because she is "scientifically intriguing" which means the doctors do not know.  She has been diagnosed with Pediatric Infection Triggered Autoimmune Neuropsychiatric Disorder (PITAND) which is a close relative of Brayden's PANDAS. Basically she has similar symptoms but we don't know the exact trigger all the time.  For Brayden, it is strep alone, whereas his sister is triggered by any virus or bacterial infection.  Her most recent trigger according to labs was a virus named CMV.  This is a relative to Chicken Pox and Mono and gave her mono type symptoms, along with the OCD type behaviors.  She was given an antiviral and all of those type of symptoms disappeared.

So why is she suddenly regressing?  On Friday, I received a call after school that the boy she sits next to left school early due to suspected strep. He had left school the previous day ill as well.  Teagan does not have any strep symptoms but she was exposed to it so her body naturally develops the antibodies.  So those antibodies start attacking the brain and there you have it. The doors all have to be shut.  Everything has to be done in a particular order that makes no sense to anyone else.  She screams in anger and throws anything that gets in her ritualistic way.

Therefore, we are not just taking one child to this expert neurologist, but two.  We are so hopeful that this man will give us the answers we desperately seek and the solutions that will put both our children on track. So hope along with us as we look forward to finally seeing a doctor that can find the logic in this chaos!

Saturday, September 28, 2013


I've debated whether to post this story.  It is extremely emotional moment for me.  After reminding myself that my purpose in posting about PANDAS is the hope that just one person will recognize the signs earlier than we did, I decided to post it. So here is the story.

This past Monday, we were told to discontinue Brayden's newest antibiotic as it wasn't giving us the results we had hoped for.  By Wednesday, his behaviors were gradually getting worse.  He would cry for 30 minutes straight simply because he couldn't find something to do.  He couldn't do his math homework.  He started needing the bathroom all the time.  By Thursday, his tics had returned. He was swishing at his neck, clearing his throat continually and sucking on his fingers all day.  He was talking like a toddler again.  We were in a full regression.

On Friday, I had three errands to run.  The library, boy scout store and Trader Joe's.  All enjoyable outings for Brayden and he agreed that he was eager to go on them and get out of the house.  I was just hoping that his little sister avoided aggravating him in public and knew that he generally kept it together in public.

Here's where the story really starts.  We arrived at the library.  Brayden and Ellie immediately were drawn to the fall market stand in the kid's section and eagerly began playing with it.  I went to the nearby movie rentals to grab some for the weekend.  Eventually, Ellie aggravated Brayden by not giving him what he wanted. One thing you have to understand about Brayden is that normally he is a very good big brother that gives his little sister anything she wants without thinking twice.  When he is inflamed with PANDAS, he loses this rational thought process and has no emotional tolerance.  I reminded him to be patient with Ellie and that he could have his turn with the play food in just a minute.  Well, he did not like that answer and stomped off.

Brayden is a rule follower.  He knows to stay in the kid section so I never thought twice about where he stomped off to.  I proceeded to check out our movies in the kid area and suddenly had this panic over me that he was not present.  I looked around and no Brayden.  I grabbed Ellie and quickly looked down each isle.  No Brayden.   I checked the bathrooms, the car, the adult section.  He was missing.

My motherly panic set in as my brain tried to think like him and I feared he might be walking home.  He had tried to run away for the first time the night before, stopping at the front door with fear of the dark.  He had never left my presence in public but I quickly reminded myself that PANDAS behavior is so incredibly unpredictable.  The child you think you know is no longer there.

I immediately alerted the librarian and they manned the doors and started searching the library.  I dragged Ellie through the perimeter of the library while they paged his name.  I was about to call the police when I saw him.  Huddled up against the end of a row of books.  In the kid section.  Crying and rocking.

I went from feelings of joy to anger to sadness to relief.  I told the librarian he had been found and within her earshot told Brayden he was grounded.  I reprimanded him for hiding in the library when he knows better. He told me nobody loved him and he wishes he was dead.  What?  I immediately reprimanded myself for feeling the need to punish him in front of the librarian just so I could redeem myself as a parent.  This poor kid is never punished or grounded.  He is a good kid.  He doesn't do stuff like this.  PANDAS does.  I followed through with his grounding but he didn't care.  He sobbed at home curled in a ball for the next hour asking to die.  I was heartbroken, he had never hated life so much.  He let me hold him.  We talked about how this horrible PANDAS is making his brain make bad choices and feel so sad.  I told him how much we loved him and everything he brings to our family.

I decided after that moment that I am no longer on my doctor's agenda of wait and see.  The conservative approach is obviously not the right approach. If I have to drive across the country to get the help he needs, it will be done. PANDAS will not win!

Thursday, September 19, 2013

Where it all began...Brayden's PANDAS story

The more I read about PANDAS, the more I learn where this all started for Brayden.  He has always been a sweet gentle child with great insight into the world around him. A deep thinker, he would be seen by others as quiet and a loner. His sensitivity made him a good friend to a few select people, a careful eater, and a passionate reader.  The question I keep asking myself is when did this all change?

Now the answer is clear.  The first month of kindergarten, Brayden developed strep throat.  By February, he was so sick that he became malnourished and stricken with anxiety. We went to doctor after doctor visit only to be told that he would be fine.  His food restricting became so severe during his malnourished period that we enlisted the help of an occupational therapist.  Still with no success, we started investigating physical possibilities.

In July of last year, he had his tonsils and adenoids removed as his ENT informed that they were chronically infected and blocking 70% of his airway sitting up. We thought this was the answer and waited for that miracle cure. We also discovered many food allergies at this time and removed all those.  We waited. We had progress.  Then it was gone.  The school anxiety crept back in and he started excessively eye blinking. We took him to an eye doctor. Nothing wrong.  He started repeated rap rhythms all the time. We then realized he had tics.

When food chaining therapy didn't work, we switched therapist and found who I call our little angel, Emily. She taught us so much and developed a genuine loving concern for Brayden. She strengthened his weak core and aroused his nervous system that had been "sleeping" for years. We saw some progress until February came and strep showed up again.  This time is was tricky though. It showed as an ear infection, the first one in over 6 years.  It was quickly treated only to immediately return undetected. He cried and cried over going to school. He wouldn't eat more than 3 different foods at a time, none of them healthy.  Emily begged us to see a bio medical doctor, a Defeat Autism Now doctor, who would look for physical reasons for his problems.  I made the appointment with a four month wait!

The light bulb started to go off when I brought Brayden to the doctor for a cold. They automatically did a strep test even though he didn't have a sore throat.  It was positive.  This time, the antibiotics made a huge difference. He stopped crying about school, he started eating a little more, he was a happy kid for 10 days. Then the script was done and everything came back again.  I was counting the days until we would see the bio medical doctor.  When I talked to Emily about his anxiety coming back she asked me if I had heard of PANDAS.  Since it was suggested that Teagan may have had that with her fever disorder as a toddler, I was quite familiar with it but had never considered it.  The light bulb went off.  I was convinced he had it but knew so little about it.

School ended and we began our summer with the July 8th bio med doctor appointment in the backs of our mind. A week before that appointment, Brayden developed tooth pain from a cavity that was scheduled to be filled the following week. The dentist prescribed Amoxicillin and we took off for our 4th of July visit to Tennessee. The night before we were to see the bio med doctor in Nashville, TN, Brayden complained of a sore throat.  Since he was on Amoxicillin, we didn't worry about it.  At the visit we discussed his eating problems, sensory challenges and the possibility of PANDAs. Labs were ordered and supplements prescribed.

Two days after Brayden took his last dose of Amoxicillin, he began having rages of fury. This caused his sister to have rages of fury.  I played referee for weeks, sprinting through the house at the sound of his voice for fear he would hurt someone.  He was overly anxious about school and everything else. He wouldn't eat but a couple of the same foods every day. My sweet calm boy was no longer himself. I knew this was not right.  Then the labs came back with his strep titers.  This measures the antibodies our body produces to attack strep.  It should be zero if you don't have strep but up to 170 is considered normal.  Brayden's was 1030!  These are left over antibodies that don't go away after a strep infection, rather they start attacking other parts of your body. In Brayden's case, his brain.

He was prescribed Augmentin and within in two days, we had a new boy.  School was only weeks away, yet he had no anxiety.  He started eating foods he hadn't ate in years. He started devouring chapter books for the first time ever. He was calm and never agitated. For the first time ever, he no longer had nighttime accidents. The changes were just short of miraculous and continued daily.

Then school started.  When I picked him up that first day, he looked like he was in shock.  His eyes were blinking rapidly and he was quiet.  I knew starting school would be hard but by the weekend we had loss all the progress from the previous weeks. This continued each week.  They increased his meds, ran more labs. His strep antibodies were high and it seemed like cases of strep were popping up every week at school.

We tried to work through our local pediatrician only to be told he had rheumatic fever and needed a lower dose antibiotic.  We tried the lower dose and he got even worse.  She refused to change his antibiotic.  I called his bio med doc frantic and begged them to move his next appointment up.  We were lucky and they accommodated.

After meeting with this doc, he looked straight at us and said "you have to take him out of school".  The meds were changed, many were added and we were sent on our way with a homebound application and hopes of having our boy back.

So now today, the new meds aren't working.  We see glimpses here and there showing us that they are trying to work but he just isn't coming back today.  He eats the same three things every day.  His rages are few and far between but he gets mad easily.  He can't do math calculations and he is tired of taking medications.  Who can blame him?  So we email the doctor and wait the two days it takes to get a reply.

This is the journey of PANDAS.  So hard to treat, so hard to watch and so hard to wait.  Wait for the next message from the doctor, the next lab results, a new medication, another opinion.  It is always waiting but with hope that you will see that sweet boy again soon.

Sunday, September 15, 2013

The world is gross!

I wrote this last week and forgot to post it:

It started with my usual good morning wake up, only this time Brayden grumbled "I can't go to school, the school is so yucky and dirty"  I knew at that moment, he was worse.  It then progressed to his breakfast was yucky after a few bites.  I reluctantly shipped him off to the "yucky" school with hopes that he would survive his day without too much anxiety.

After school, "Brayden, why didn't you eat your lunch again at school?"   I'm really not sure why I ask this question because I know the answer. "The cafeteria is so gross, even the peanut table was gross, so I couldn't eat it"  This is the same kid who a month ago ordered his first healthy meal at a restaurant.  I then inform with excitement that we are going out for frozen yogurt to support his schools PTA.  "Mom, I have to go potty and the bathroom there is dark and yucky. We have to go home".  Ughh, this time I essentially tell him no, I'm not ruining it for the girls and he manages to do his business and enjoy the yogurt.  Later at home, my youngest is trying a paleo treat that arrived in the mail. Brayden gets site of it on her face and freaks out "get her out of here! She is gross, get her away!"  This is OCD.

Obsessive compulsive disorder is a crippling disorder for everyone involved. It causes a person's mind to have unwanted feelings or thoughts that often lead to compulsions.  Brayden's OCD was mostly limited to food.  Food has to be perfect or there is something wrong with it. The only perfect food is processes food which is horrible for a growing child. I have been told by doctor after doctor that he won't starve.  We put this to the test several times and found that yes, he will starve.  When he actively has OCD, there is no way to get Brayden to eat anything but perfect food.  Our current doctor understands this.

I actually thought Brayden did not have complusions although the psychologist in me knew they had to be there somewhere.  When I finally explained OCD to Brayden, he thought for a moment and said "you mean like how I have to darken the lines on my assignments at school without my teacher seeing?"  Wow, that poor kid makes more work for himself than anyone knows.  How many other compulsions does he have that no one is aware of?  Often these rituals are seen as funny quirks or not even noticed at all but for the child, they are completely exhausting.  As Brayden has become sicker this week, I noticed he has stopped playing the iTouch that he previously could play for hours on end.  As we talked about OCD, he mentioned that he has to rub the screen of the iTouch repeatedly while playing the iTouch.  Again exhausting.

Unlike most cases of OCD, Brayden's is almost completely absent when his PANDAs is controlled.  He starts exploring new foods, leaves the house without anxiety and acts like a normal kid.  We just started a new course of treatment and here is hoping we have our kid back in the next few days!

Saturday, September 7, 2013


I sit on the bench enjoying conversation with a friend as our kids run and play.  Inside I'm really on edge wondering if Brayden can hold it together for this play date. I see Brayden heading my way looking defeated. I give my friend the look and she knows this is the end of our play date.  My 8 year old, normally confident and fun loving son starts sobbing "nobody likes me. I want to go home"  There is no use negotiating or telling him otherwise.  He has lost all mental flexibility this week and the way he views our world is the way it really is in his mind.

I want to say "suck it up" but my heart tells me that won't go well.  That darn strep monster is eating at his basil ganglia again. The part of the brain that controls emotion is being attacked.  My son doesn't have a strep infection.  He is actually very healthy at the moment.  Instead, his brain is being attacked by the left overs from an infection months ago.  The antibodies that his body made to attack the strep infection have become confused.  Those antibodies now think that his brain is what needs attacking.  I really wish they would stop. Weeks ago this same kid would have to be pried off the playground in the middle of some game he created with his friends.  But today, nobody wants to play with him because there are no games. There is no creativity. He can't even come up with a conversation.  He is lost.

So we head home. He fights with his sister the whole way and our night begins...

Friday, September 6, 2013

Your brain is on fire!

There is a wonderful book called Brain on Fire about a terrible neurological disease not all that different from Brayden's PANDAs.  But this post is just a glimpse into how PANDAS effects Brayden.

"Mommy, why can't I get to sleep anymore? I used to but now it's like I'm not even in my own room anymore. If I can't hear anyone out there it's like I'm the only one home. My legs itch, I feel sick and I just want it to be morning.  Please don't go to sleep before me. Why I can't I fall asleep?"

I want to say "My dear Brayden. You can't sleep because the strep monsters have your brain on fire. These monsters are not under your bed. They are not in your closet. They are in your brain. They are attacking your basal ganglia and depleting the dopamine your body needs to help you fall asleep.  They are messing with your emotions and behaviors. They are making you think that all food is gross so that your little tummy is growling right now with a hunger that I can't take away. We are trying to fight those monsters but it takes time. Your mainstream doctor doesn't see those monsters. Your other doctor who knows about those monsters is too busy helping other kid with monsters. So my dear Brayden, you can't sleep tonight because of strep monsters and unlike other monsters that kids have, a spray bottle of monster eliminator will not get rid of them.  But I promise your mommy will not stop trying to get rid of them and one day you will sleep soundly in your own bed safe and secure."

But I don't say any of that.  I say "Little buddy, mommy has made you a comfy bed in our room right next to our bed."  I get a big smile, and within minutes, he is asleep.

Sunday, July 21, 2013

The Outerbanks - Previously undisclosed photos!

I thought I would wrap up my Outerbanks series with some photos that I didn't include in previous posts.  If you enjoyed this series and know of someone you want to share it with, please do!  I enjoy seeing my audience expand. Most recently I reached China!  You just never know who is reading.

Anyway, let's start with a close up of what the fisherman brought in.  We think this is yellow fin tuna but feel free to correct me if you know your fish.

A close up of an exhausted Ellie.

Brayden thought he was such a comedian taking this picture.  You know kids, they are all about saying the word "butt"

Approaching the island.

This little creature stole our heart. He washed up on the shore determined to make it to land. We desperately wanted to help him but we could tell there was nothing we could do.  We frequently went to visit him and would comfort him with talk. He seemed to like hearing our voices.  He only lived for about 24 hours.

Closer view of the hermit crab. They look nothing like the ones at the mall.

Here is a very majestic looking crane.

The view of our camp site while standing in the ocean.

Teagan was such a happy girl on the beach,

Brayden was always in deep thought and

Ellie thought it was a big playground.

The beach can be an eerie place to be at night.

Our camera did not do the beauty of the island justice.

Someone was sad to be leaving the island.

"Look mom a whale!"  "No dear, that is just a log"

There was plenty of fun to be had off the island.

And a beautiful drive home

This vacation definitely left a lasting footprint on all of us.