“There is No Such Thing As a Coincidence

This is the second installment of my “Parent’s Perspective” (written by my mother):

The headaches were so bad that Reddy would cry in pain— for hours.  Nothing helped.  Not Aspirin.  Not Tylenol.  Nothing.  We felt so helpless not being able to do anything to lift the pain and provide relief for our little boy.  I didn’t even know that children could have such bad headaches.  Most times the pain would get so bad that he would vomit violently and then get some small measure of relief.  Enough to collapse into a retreat of sleep.

When the headaches struck, and they did so often back then, we would sit by Reddy’s bed as he alternated between howling and whimpering from the searing pain in his head.  All we could do was watch and hold his hand, careful not to move him which would further exacerbate the pain. And we would pray.

We realized that prayer was the only thing that we could offer Reddy.  Prayer for an answer.  Prayer for healing.  Prayer for comfort.  The medications, the endless doctor visits, the steady stream of tests— none of that was helping.  Praying with Reddy not only gave him comfort when our own words failed to soothe, but it also gave us an anchor.  It was the one thing that we could do when all else was failing us.  It was only later that I saw how God was at work all along.  There is no such thing as a coincidence.

About a month or so into Reddy’s medical journey, after all the tests and doctor visits and no answers, our pediatric neurologist suggested that Reddy’s “symptoms” were the result of an overactive imagination.  I desperately wanted to stop all the testing, the hospital visits and believe that nothing was wrong with Reddy, but I knew in my heart that was not the case.

“Coincidence #1”

Months earlier, Reddy’s godfather (a doctor) and godmother had excitedly told us during vacation together (before Reddy’s symptoms were even noticed) about their friend’s wedding that they had attended in Korea.  It was a joyous miracle that this wedding even happened and that their friend was able to down the aisle because the previous year had been a medical nightmare.

Their friend had been misdiagnosed time and time again over the course of a year, enduring a stroke and unnecessary medical treatments and procedures.  Thankfully, she was finally diagnosed correctly— she just happened to have Moyamoya disease.  I think that I heard the name and then promptly forgot it because it had no relevance for me.  I was just happy to hear that their friend got surgeries (at Stanford) that saved her life.

So when our friend heard that we had still not found out what was wrong with Reddy, but heard his symptoms which sounded so similar to his friend’s, he suggested that we ask our doctor if Reddy had Moyamoya like their friend.  But we told him that he did not.  When asked weeks earlier, Reddy’s pediatric neurologist had actually mentioned and ruled out Moyamoya at our first visit when he ran through a list of things that could have caused Reddy’s symptoms and dark spots on his MRI (he never even noticed the “puff of smoke” network of blood vessels that laced his brain— a text book illustration of MM disease).

“Coincidences #2 & #3”

After seeing the almost ten doctors in NYC, the one diagnosis that they all seemed resigned to was that there was a parasite in Reddy’s brain.  However, this kind of parasite was typically found in people who ate undercooked pork or lived in the Caribbean— neither of which applied to Reddy.  It just did not sound right.  But we sent his blood to be tested anyway. Our dear friend (Reddy’s godfather) pressed on and urged us to go to Johns Hopkins where Reddy’s grandfather just happened to be an anesthesiologist to get a second opinion.  I didn’t want to subject Reddy to any more poking, prodding, testing and hospital waiting.  Thankfully, my husband did not agree and asked his father if he could get an appointment for Reddy.  My father-in-law’s friend just happened to be the head of pediatric infectious diseases at Johns Hopkins and he was able to see us the following week.

We had our appointment with the pediatric infectious diseases doctor and he drew more blood to be tested.  He told us that it was unlikely that Reddy had this parasite given his lack of risk factors and symptoms.  We then asked if he could pass along Reddy’s MRI films to the pediatric neurology department for them to take a look.  We did not know where else to go and were desperate for an answer.  He told us that he would send the films over but warned that we were not likely to see one of their doctors for months because of their wait unless it was a matter of life and death.

My heart dropped when I received a call just a couple of hours later asking us to come in the next morning to see Dr. Lori Jordan, pediatric neurologist.  This was bad news.

“Coincidence #4”

Dr. Jordan just happened NOT to be at lunch when the films arrived at the pediatric neurology department.  The films could have landed in the hands of any of the other neurologists there, but they just happened to land in Dr. Jordan’s hands— one of our country’s foremost experts on Moyamoya disease.

We were seated with Reddy in her office staring at Reddy’s MRI films.  Dr. Jordan pointed to the spindly blood vessels, listed Reddy’s symptoms and told us plainly that Reddy had Moyamoya disease.  In fact, the MRI’s showed a “textbook” case.

I felt myself sinking, falling out of my body and watching the whole scene unfold disembodied from myself.  I heard Dr. Jordan speaking—Reddy needed surgery immediately.  The frequent TIAs were a precursor to a major stroke.  We had to do something.  But I could not feel.  If I let myself feel I would be crying hysterically in disbelief, frightening my son who did not understand what was going on. I knew that I had to be strong for Reddy because we were about to embark on path that I had never expected to go down.  This was not the story I imagined for my child.

A MM Survivor’s Guide to School

This past week I, along with most of the country, started school. The beginning of the school year is the best time to develop healthy habits, especially for students with Moyamoya.

At my school, I let all of my teachers and sports coaches know that I have Moyamoya. Although almost none of them initially know what the disease is, I explain to them how it can affect me. It is crucial to be on the same page with the adults around you during school because, in the event of an emergency, it will be difficult to have to explain what is going on. These faculty members will not only be better suited to help in the event of an emergency, but will also know what is going on with you in general; they will be aware that you need to stay hydrated, cannot have anything that restricts blood flow to the head, cannot hyperventilate, etc.

Despite almost never being in situations where my teachers or faculty needed to help me, it is safer and more reassuring to have the options available. The only times that I was given “special treatment” were when I was allowed to go outside the class and get water whilst others could not. This experience made me feel uncomfortable and alienated from my classmates. However, it is extremely important for all of the adults in your life to be aware that you have Moyamoya, and that importance cannot be understated.

In school, it is critical to stay hydrated. I have had days where everything just flew by in a blur, and it was only at the end when I realized that I have not been hydrating. Remembering to drink water can be the most difficult aspect of staying hydrated, and one of the best ways to stay on top of it is to carry around a water bottle.

Investing in a BPA-free water bottle is a great idea, and bringing it from class to class can ensure maximum hydration. You can fill it up at water fountains or in the cafeteria, and even bring it to sports after school. An important notion to be aware of is that there is no downside to drinking tons of water. It is better to air on the side of more water than less, simply because the only effect will be more frequent urination.

My last tip for students with Moyamoya is to know one’s body. Having a good sense of your limits, and what you can and cannot do is the best way to keep healthy. Using common sense and not doing anything stupid, keeping in mind your limits, helps immensely.

Feel free to email me feedback at: livingwithmoyamoya@gmail.com

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“Children Don’t Have Strokes… Do they?”

Hello Everyone,

I apologize for how long it has been since I have posted. School is about to start, and preseason, preparation, and family have kept my busy.

In the coming weeks, I will be doing the Parent Perspective segment that I have previously promised. The one that I will be posting today was written by my mother, and is Part 1 in a short series.

Here it is:

No one expects a child to have a stroke.  Much less three.  All before the age of 8 years old.

The first one seemed innocuous enough.  He says that his arm feels funny.  Maybe his arm fell asleep.  Maybe he doesn’t have the words to properly describe what that feels like.  But it does seem strange that he feels like he can’t move his arm…

The second one seemed like a case of sleep walking and talking.  Why are his words all jumbled up?  Is he speaking gibberish in his sleep?  But he looks wide awake and seems like he thinks what he is saying makes total sense.  “Go back to sleep to honey.”

The third one seemed like a case of his legs falling asleep.  But then while walking to the bathroom to brush his teeth, he started to stumble and fall.  I picked him and propped him up on the toilet seat so that he could brush his teeth.  He slumped and I had to grab him before his head hit the sink.  Something was definitely wrong.

This started the journey of trying to figure out what exactly was wrong.  From the spring of 2008 to the fall of the same year, we saw what seemed like an endless stream of doctors from neurologists and neurosurgeons to neuroradiologists to hematologists and cardiologists and infectious disease doctors.  No one seemed to know what was wrong with Reddy.  In fact, the pediatric neurologist that we were seeing had the audacity to suggest that the symptoms that Reddy was exhibiting (which we later learned were TIAs) were the result of an over-active imagination.

At this time, Reddy seemed like a totally normal and healthy boy outside of the fact now his arms and legs would go occasionally (and increasingly more often) go “numb” and give out.  I wanted to believe the pediatric neurologist, but i knew two things about my son- 1) he would never miss out on summer vacation to willingly subject himself to what seemed like never-ending visits to hospital waiting rooms, blood draws, tests, scans, doctor interviews and 2) my son did not have THAT active of an imagination.

I wanted to believe that doctor and give Reddy a break from hospitals and tests.  Maybe it was me who was making Reddy think that something was wrong with him by taking him to all these doctors.  He looked so normal.  Healthy.  But then his arms and legs would go “numb”and I knew something was definitely wrong.

THANK YOU for reading and see you again!!!!!

Email Saved Me

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During the few months in which I had my surgeries, I was extremely lucky. The process of being operated on twice (on my brain as well!) at the age of seven was not very pleasant. I often walked around the hospital with multiple IV’s stuck in my arms. However, I was fortunate enough to be able to have several sources of happiness at my disposal, all of which helped me get through my operations. It is not easy to find ways to keep oneself occupied in the hospital, and being kept busy/entertained during the rough times can be a life-saver.

One of the activities that kept me going during my surgeries was email. Although emailing does not seem like the most rejuvenating or exciting of actions, it served as a way to connect with friends and feel a sense of normalcy. Before my surgeries, my class was learning how to type on a keyboard. Before I was about to leave to go to Stanford for operations, my recently-passed teacher Julie had recommended for me to practice my typing while I was away.

Emailing friends gave me a genuine sense of being back with them and made me feel less lonely. Despite receiving gifts and nice letters as well as having my loving mother and father stay with me in the hospital, there remained an unmistakable sense of loneliness. I remembered thinking that there was not anything in the entire world that I would not give to be normal.

I often think about the things that helped me through my time at Stanford, and the common theme seemed to be a strong support base. Through the archaic email system of the late 2000s I was able to access a key part of my support base back in the city. My class was unforgettably kind and thoughtful to me during my time away in California. I missed several class trips to landmarks around Manhattan, one of which was a trip to the Empire State Building. My classmates even held up a signs that read, “We Love Reddy” on the very top.

The level of inclusion and care that I felt was very powerful, and is something that I am still grateful for. Kindness and support can transform an experience, changing it from a traumatic nightmare to an overcome-able obstacle. But when all is said and done, it started with email.

For everyone wanting to stay updated with this blog, you can subscribe to this page on WordPress to be notified every time I post.

Additionally, I will be altering my posting schedule for this blog seeing as school is coming up and there will be less and less time to write. I will try to post ONCE a week starting in the next few weeks and the posts will most likely be on the weekend. Again, subscribe to this blog for updates.

Coming up soon will be a “Parent Feature” blog segment that will incapsulate the experience of having a child with Moyamoya disease.

Thanks for reading!

 

 

My Experience with Migraines

Migraines have played an active role of my life since the 1st grade. This was a year before my surgeries, and around the same time that I started getting T.I.A’s, or Transient Ischemic Attacks. I recall thinking that some invisible force was slowly squeezing my head from the outside, unable to make it stop. The headaches would get so bad that I would eventually vomit.

Back then, I had no idea what was causing the migraines and how to prevent them. It was a scary time for me, both due to a lack of knowledge about them and the pain they caused me. I have still had migraines post-surgeries, however there have been less and less every year.

After years of having migraines, I have noticed patterns in which I get them. In my experience, consistent lack of sleep has been known to lead to a migraine. Dehydration as well as tiredness have also been determined as factors towards migraine frequency.

My migraines usually start as I wake up in the morning. It often hurts to look at light or hear anything loud. Any movement of the head results in searing pain that subsides into a dull throb. As soon as I wake up with a migraine, I try to gauge its severity. If the pain is unbearable, I take an Advil. If not, I simply go back to sleep.

I usually wake up a few hours later with a dull headache. The pain has changed from sharp, erratic, and extremely painful, to a consistent and dull throb. The rest of the day after a migraine is sluggish, with no room for strenuous physical activity or horsing around. The day seems to have a haze over it, one that dulls everything.

This summer I have had several migraines. They have prevented me from going fly-fishing with my family, visiting the DMZ in Korea, and going to church. Migraines can take away an activity or even day from your life through limiting availability and activity. To best prevent migraines, I try to take my daily dose of Aspirin (prescribed to me since surgeries), get to bed early (too late for that tonight), and stay hydrated.

Thanks for reading, and feel free to share any of your migraine stories with me via email or through the comment section.

Quick update: I will soon be making an email specifically for Moyamoya and blog-related content.

The Future of This Blog (Update)

Hello Everyone,

Thank you for stopping by my blog, Living with Moyamoya. I have been blogging for almost three weeks now, and the site has gotten off to a pretty good start. I have written about a wide variety of topics, ranging from my own experience diagnosis to recovery to my brother’s broken ankle. Although I do believe in a free-spirited, not necessarily scheduled medium, it is not easy coming up with ideas of what to post every Wednesday and Saturday.

Regarding the blog, there are several things on my to-do list. Firstly, I need to figure out ways to branch out and get the maximum audience and therefore awareness. I am not sure how to approach this, but have recently found out that this blog will be featured on Stanford’s Moyamoya website. This is great news for me, as it helps ease the always pressing issue of networking.

This blog has also been difficult to manage for me, especially in regard to minute details. I have had problems managing comments (there currently are not any), sub-sections of my blog such as the About. Please, please, PLEASE let me know what problems you notice so I can try my best to fix them.

In addition, I need to figure out the overall direction of this blog in the coming months. I have been thinking a lot about the different forms this blog could assume. I could focus primarily on my own experiences within the realm of Moyamoya-related activity. There is also the potential for this website to act as a regular blog, about my current goings-on with the occasional Moyamoya post. Another idea that I had was for the blog to function as a hub for Moyamoya news or gatherings, although there are already outlets such as this.

This post is more of an update than anything, but its success is dependent on the replies of you readers. I would love feedback about how to:

  1. Change the Website (perhaps the format)
  2. Alter the scheduling/direction of my blog (if necessary)
  3. Improve in general

 

Thank you for reading, and my email is under the “Contact” tab.

The Burdens of Living with Moyamoya

Today, I wanted to talk about the obstacles that Moyamoya has thrown into my life. Before I start, I recognize that my experience has not been the same as many others with the disease; I was extremely lucky to be able to have two successful surgeries and show signs of drastic improvement afterwards. However, I want to share the impact that the progressive cerebrovascular disease has on my life.

Having Moyamoya has always set me apart from the other children in my school. The disease does not nearly have the awareness that it deserves, which meant that most of my classmates did not even know that it existed. When recalling my month-long absence from school in 2nd grade to go to Stanford for surgeries, former-classmates often put it simply: “Oh yeah, you were sick that year.” There was no mention of the name Moyamoya, but just the fact that I was missing.

The lack of knowledge about my disease erased the potential empathy and comfort that could be provided through shared experiences. In school, there was no source of companionship and Moyamoya community for me. Even after finding various Moyamoya Facebook groups, I felt alone. None of my family or friends have Moyamoya, and I have to search in other parts of the country to find similar stories to mine.

One aspect of life where having Moyamoya alienates me from my peers is sports. There are certain physical limits that inherently come with the disease, many of which have affected my sports life. Every year before school starts, kids must sign up for sports throughout the year. For the majority of my grade, there was a variety of different options for every season. For me, football, soccer, wrestling, and lacrosse were out of the question.

In addition, every time I play on a sports team, the coach is notified of my condition. Hearing a foreign-sounding disease sure can be intimidating, and a coach can often misunderstand that I am also an active, happy boy — minus the need for hydration and lack of head trauma. Sometimes when a group of people (including me) are all working hard or are perhaps doing conditioning work, I am singled out as able to take breaks or drink water when all others cannot. This makes me feel rather uncomfortable, and the feeling of getting extra treatment or special care has never really settled well with me.

For me, hyperventilating leads to a stroke (or a Transient Ischemic Attack). Crying, playing a wind/brass instrument, blowing up balloons, and even yoga/meditation are dangerous for me as they can lead to hyperventilation and therefore a stroke.

Hydration is key with Moyamoya. I encourage you all to check out my friend Alice’s blog allformoya.wordpress.com for amazing tips for staying hydrated. Throughout school, I have had teachers who were super concerned that I was hydrated. I myself try my best to carry around a water bottle during school and drink whenever I can. But the attention given to me by my teachers made me feel uncomfortable, especially because it did not have anything to do with academics.

The different limits that come with having Moyamoya can be frustrating at times. They can make me feel uncomfortable, or alienate me from my friends and peers. However, this blog is my outlet to share my experiences, and is a far better medium than through awkward small talk with a stranger. I love to talk about Moyamoya with all of you readers, and if you feel the same or want me to talk about anything at all on this blog contact me at:

reddylee01@gmail.com

Thanks!

 

A Brief Tribute

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Today I wanted to share how grateful I was for a special group of people in my life. These men and women were the doctors and nurses that helped me when I was at Stanford for my surgeries. They made my experience wonderful, even considering the circumstances surrounding my visit.

The picture above was taken during my time at Stanford after my two surgeries. I was recovering and starting to get back into the flow of normal life; I emailed my friends, played with my Pokemon Cards, and watched tons of TV. Since my stay at Stanford was in the Fall, Halloween happened while I was still recovering from my operations.

For all of the children at Stanford for various operations and surgeries, there was a mini Halloween trick-or-treating party. I remember that I wanted to dress up in a Stormtrooper costume, but the helmet restricted the incision marks from my surgeries. To allow me the “full” experience of the costume, a face-painter hired by Stanford copied made me a “mask” of my own (see above).

During the brief hour that the trick-or-treating lasted, Lucile Packard Children’s Hospital was transformed into every kid’s ideal Halloween: endless heaps of candy and awesome costumes everywhere. While I was in the moment, I enjoyed walking around what used to be sterile white halls with intimidating machines filled with balloons and silly costumes. Looking back at my experience now, I realize how much time and effort was put into the creation of such an unnecessary event.

Making a Halloween party for kids who perhaps did not have any other source of fun or happiness in their lives was one of the many actions that made Stanford’s Lucile Packard Children’s Hospital a truly remarkable experience. The people who worked there were kind and understanding; they knew that allowing little boys and girls to enjoy Halloween would let them feel like happy, normal kids.

Many of these activities and services towards patients at the hospital had nothing to do with physical health. Instead, they helped revive the emotional and mental state of patients who could have spent months lying in a hospital bed. Halloween at the hospital gave children something to enjoy when there was not much else.

To all members of the Stanford Neurosurgery team and the Lucile Packard Children’s Hospital: Thank you, and I would not be here today, in the state I am without you.

The Last Month of Summer

August has arrived, and thus the second half of summer began. Summer has gotten off to somewhat of a slow start, with no routine established until mid July. Traveling to Korea for the first time was awesome, and a truly memorable experience; however, it ranked a meager 4.5/10 on my scale of productivity.

Since arriving back home I have established routines of running (in the desperate preparation for cross country) and working. It is worrying to me that it took me a month to settle into a groove. Everything — physical training, academic work, my job, service projects — has kicked into hyperdrive. The common theme so far in August has been the search for more ways to be productive.

The baseball team that I play for during the summer does not have a good chance to make it to the finals of our league, so my time with them will most likely be short-lived. I have been searching for more opportunities to play baseball, but there are limited options where I live. The team is fun, yet somewhat unsuccessful in competition. For me, the state of the team is completely fine, seeing as it means more playing and reps on my part.

I have long been planning to start some sort of a contact/support group for children who have Moyamoya disease. However, I have been having trouble actually getting the idea from my head into reality. As with every other ambitious endeavor, there is a large gap between a concept and a real life achievement.

Despite not creating anything of tangible value, I have not given up hope. Very recently, a fellow Moyamoya warrior named Alice has approached me with ideas similar to my own. The plan is to work together to accomplish some of our shared visions. She will be making appearances on this blog, which I am looking forward to. I believe that it is important to have multiple inputs and point of views. While I am on the topic, I would like to mention that I have also been planning to add more and more “guest appearances” on the blog, not necessarily just from Alice.

One of the things that I am excited about, or pleased with, is my work this summer. I am working as a chess teacher/coach at various locations with the organization Chess NYC. It is great to be able to use my skills as a chess player (my chess rating — not ranking, look it up — is 1962) to help others.

In addition, I am going to post on this blog at least twice a week. The plan is to upload a post every WEDNESDAY and SATURDAY. This will allow me to talk about what is happening during the week as well as a retrospective view. Although I will DEFINITELY post on Wednesdays and Saturdays, I will occasionally post during the rest of the week in the event that something of interest occurs.

Thanks for reading!

 

A Bittersweet End to July

The other night our family, joined by our close family friends, attended a beach party run by our church. The evening was spent playing frisbee on the hot sand, wading through freezing cold ocean water, and running across the beach in an epic game of manhunt.

One activity that was not mentioned above had the largest impact on the night. There is a lifeguard stand on the beach that is vacant after around 3 or 4 pm. It is a popular game to climb up the lifeguarding station and jump off one of the three steps onto a large pile of sand. The sand acts as a cushion for the jumper and raises the area of impact as not to cause injury. On the other side of the stand is one ledge, sans steps, and no comfortable mountain of sand to land on.

Early on in the evening, hours before the sunset, my brother Atticus and I, accompanied by several friends, decided to play on the stand. After a few uneventful jumps off the safer side of the lifeguarding stand, several of the kids decided to jump off the rather unforgiving and extremely intimidating side of the tower. I, for one, have a fear of heights, and declined to jump off the highest part of the structure onto flat sand. However, Atticus and his friends jumped off a few times each, landing with various degrees of elegance.

To make the game more exciting, the frisbee was incorporated. As the designated “watcher” of the jumping excursion, I threw the frisbee up to the top of the tower where people were standing while one either caught it up there and threw it back or jumped off the stand and caught the frisbee mid-air.

Eventually, Atticus stepped up to the top of the formidable lifeguard station with a confident smile strewn across his face. There was nothing to be worried about, seeing as he had landed the jump a few times. He jumped, flying through the air with grace as he caught the frisbee. Catching a moving frisbee while falling nine feet onto flat sand is no simple feat, and soon took its toll of Atticus.

He landed in an awkward position, and quickly buckled down and started grimacing on the sand. At first several of the kids were joking around with Atticus, not expecting him to truly be injured. After laying on the ground gripping his ankle for five minutes, we started to get worried. The decision was made to carry him back to the fire and party setup to get him looked at.

By the time that Atticus’s ankle was looked at by several doctors who happened to be at the beach party, the ankle was the size of an apple. It scared off several of the smaller children, and at that point everyone knew that it was serious. There was a variety of reactions across the party, ranging from mildly interested to freaking out. My little sister Pippa attributed to the latter.

It became clear that Atticus was severely injured, and he was eventually loaded into the back of our car and driven by my mother and father to the emergency room. The rest of the night had a dark cloud of sorts looming over it. It was difficult to enjoy the evening knowing that my brother was not there.