Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.

Tuesday, October 30, 2012

Over Charles River, and through the Hurricane, to Children's Hospital we go...

Hurricane Sandy arrived in our area as expected. 

NASA photo via Getty Images
Of course true to the Peter's family tradition of unbelievably stressful special needs living, we found ourselves journeying into Boston at the height of the oncoming monsoon.

For us, this is a perfect metaphor.

Nicholas has been recovering from strep throat and an infected swollen gland. Last week, he finished up his antibiotic medication. On Sunday, the day before the storm, he started to complain of a sore throat. He did not have a fever. But like many children diagnosed with PWS, Nicholas does not always present with a fever in response to infection. I decided that I would take him back to our pediatrician as soon as it was safe to do so.

As the storm approached on Monday, Nicholas was quiet and subdued. He took short little naps throughout the day but did not exhibit any alarming symptoms of distress. By afternoon, the storm began to unleash its fury, with bands of high winds and heavy rains starting to batter our home.

At 1:30 pm I headed into the kitchen with Nicholas. Under the large overhead kitchen light I could clearly see Nick's face. I gasped at what I saw. His right cheek, forehead and chin were covered with a large, hot, raised, red rash. The left side of his neck had begun to swell again. I touched his head. He was very hot. I knew he was in trouble.

I called my husband Pete to come and take a look. I told him to get ready, it looked like we needed to take Nicholas to the hospital.

"Call the doctor," Pete said.

I quickly picked up the phone and called  Dr Bhathena. Thankfully, she was in the office. As I explained Nicholas's condition to her, she told me she hated to do this to us, but we needed to transport Nicholas to Children's Hospital immediately.

"I will let them know you are coming," she said.

I flew into action.

I ran upstairs and grabbed my husband's duffel bag filling it with Nick's clothes, my clothes and a handful of toiletries in case we need to spend the night in the hospital.

The thoughtful Weston, collected Nicholas's Dora pillow, his Dreamlite and Spike, Nick's favorite friend.

Pete threw all of our supplies into the truck, including medications for both boys, and it was off to Boston we headed, hurricane or no hurricane, it didn't matter, Nicholas needed to get to the hospital.

It was 2 pm and we were headed directly into the oncoming tempest.

Bands of heavy rain pelted our vehicle throughout our drive to town. Heavy wind made it difficult for Pete to keep the truck in our lane. Several times a heavy blast would send us drifting across the road. Thankfully, there was very little traffic. Most residents heeded the dangerous weather warnings.

Pete was quiet as he concentrated solely on driving. We saw pockets of damage along our route. Every town we passed seemed to show signs of Sandy's fury. There were toppled traffic lights, downed branches and torn shingles that littered the road.

We carefully crossed the Tobin bridge and for the first time in our lives, we did not need to pay a toll. This of course, to keep cars from collecting on the dangerous wind-swept bridge during the storm. From the bridge we could see several large tanker ships bobbing in the bay like toy boats in a bath tub. But they were docked safely in the harbor and out of harm from the 30 foot seas.

We entered the city of Boston, and headed into Kenmore Square. On our right, police lights were flashing. The giant billboard that sits next to the famous Fenway Citgo sign had tumbled.  We were directed past some yellow tape where police had blocked off a section of the street for safety.

Pete continued driving us slowly toward Children's Hospital. He dropped Nick and me off at the ER and headed toward the parking garage with Weston.

A nurse met us at the ER door. She checked her list and saw that Dr Bhathena had prepped them for our arrival. We were checked-in quickly. Once again the storm had inhibited folks from travel and the ER was unusually quiet.

A resident quickly gathered our info, examined Nicholas and took a throat culture. After a while the Managing Resident Doctor arrived to tell us Nick's strep test came back negative. She was tempted not to give Nicholas any antibiotics since "there was nothing to treat."

I gasped and she immediately saw the horror in my face.

'Don't worry she said, I will check with your pediatrician. We are not going to do anything that makes you uncomfortable." and off she went to call Dr Bhathena.

"Phew," I said and breathed a little easier.

Dr Bhathena must have had the same reaction as I did because within minutes the Attending Physician came in to examine Nicholas. He was much like Dr Bhathena, thorough, intelligent, kind and providing us with all kinds of info as he examined Nicholas.

He diagnosed Nicholas with adenitis, an infection of the lymph node.

He explained that there could be two possible scenarios happening to Nicholas. The first, is that Nicholas has a lymph node that is prone to swelling during certain infections in which case there is no further treatment that is necessary.

The second possible scenario is that Nicholas may have a benign cyst in his lymph node. He explained that the cyst is only viewable when the lymph node is swollen. An infection can cause the cyst to become necrotic and antibiotics are needed, An ultrasound or CAT scan is usually performed when the gland is swollen to confirm diagnosis.

Under Dr B's direction, he suggested we try another antibiotic (clindamyacin) first to see if perhaps the infection responds better to a different "big gun" medication. Since the weather was so poor, he did not want us to remain in the hospital. He suggested we perform the tests at home when it was safe and convenient for us to do so. He gave us a prescription and suggested our pediatrician refer us to an ENT for further evaluation.

It is now 5 pm. Weston and Dad are bouncing off the walls in true ADHD fashion. Being confined in a small space for several long hours is not conducive to good behavior in either of them. I am thankful we are going home.

We need to pick-up Nick's prescription at a pharmacy first. With Hurricane Sandy raging, thankfully there is a CVS located in the lobby of Children's. It is open.

But of course, nothing is ever easy for us and the pharmacy must call the ER doc's several times since clindamyacin is a pill too big for Nick to swallow. It takes over an hour to sort it all out and decide upon a liquid version of the drug.

Pete takes both boys to Au Bon Pain for dinner since both children (and Pete) are now out of their minds with hunger. Thankfully, Au Bon Pain is directly beside CVS.

The boys eat as I pick up the prescription.

We are finally ready to head back outside and into the wrath of Sandy.

It is now 6:30 pm. The winds in Boston are whipping. It looks like a ghost town with no sight of any cars or pedestrians. It is an eerie sight. If you have ever visited Children's Hospital, you will know what I am talking about, even on Christmas day it is a very busy place.

Despite the difficult drive ahead of us, I am thankful Nicholas and I will not be staying in the hospital overnight. I feel as if we dodged a bullet. But as I run toward the parking garage in the stinging rain,  I can't help but feel like perhaps a second bullet has just been fired.

View of Children's Hospital from the parking garage
Strong winds shaking my camera
Notice the absence of any traffic or pedestrians
We begin our long drive home with stronger winds and heavier rains starting to fall. Pete maneuvers us carefully through the streets of Boston and onto Interstate 93. I an nervous and holding onto my door handle tightly. OK  I admit it, I am somewhat of a backseat driver, but tonight I try to keep my big mouth shut and allow my husband to drive in peace. With the over-tired Weston giggling and farting in the backseat, this is almost impossible. We come up quickly toward a traffic light and I firmly press my right foot to the nonexistent brake on the floor. The hyper-focused Pete stoically continues to ignore us all.

It is rush hour on a rainy, windy Monday evening and eerily... there is no traffic.

This is the view outside our front window in Boston.....no traffic.

On the highway...no traffic

No traffic, no cars, no lights, nothing. It is a very unfamiliar and somewhat creepy sight.
Thank goodness for my heroic husband Pete.
Later, we arrive home safely. All of us are exhausted. Thankfully, our lights are still glowing.Both boys bathe and head directly to bed.
Overnight, Sandy's winds increase again and begin to howl and roar, and once again in true Peter's family tradition of stressful living, it isn't long before both boys climb into our bed.
As I lie in bed listening to the gusty winds and the sound of Nicholas breathing, I try to quiet my mind by reflecting on the busy day's events.
Nicholas did not require hospitalization.
We safely made our way in and out of a treacherous journey to Boston.
We did not loose power.
No one was injured.
We received no property or household damage with the exception of a few shingles blown off from our garage roof.
We are safe, we are healthy.
And although our life is indeed chaotic and stressful, I still feel the need to thank God for our health and safety.
We are indeed a fortunate family despite our adventuresome lifestyle.
p.s. I am off to make an appointment for Nicholas with the ENT, will keep you posted.

Sunday, October 28, 2012

The Victim, The Persecutor and The Hero

According to William Shakespeare:

All the world's a stage,
And all the men and women merely players;
They have their exits and their entrances,
And one man in his time plays many parts....

Taoists philosopher Yun Xiang Tseng has a similar theory, he calls it the Game of Life. In this game, there are several players:

The Victim
The Persecutor
The Hero

According to Tseng, each of us plays each of these roles throughout our daily life.

He warns however, that sometimes these roles are not what they appear. When you are a hero, you are sometimes a victim. When you are a victim are you seeking to prosecute? When you are a prosecutor do you believe you are a hero?

The secret he says, is to play each role with gusto, to enjoy the position you are playing. But when the day is done, remove your mask, and separate yourself from your role. This he says, is the key to happiness. To the Taoist philosophers, emotions are like decorations in the living room. It is important to notice and explore them; but when you are done it is more important to place them back upon the shelf where they belong.

As a parent of two children diagnosed with special needs, I am all too familiar with these masks.

When my son Nicholas was first diagnosed with Prader Willi Syndrome, I felt betrayed, and played the role of victim.

When I battled with schools, insurance companies and drug companies, I felt angry, and played the role of persecutor.

When I fought the fearsome forces of disease, I felt alienated and misunderstood, and played the role of a reluctant superhero.

Stan Lee's The Traveler by Boom Studios

I have discovered that I have become addicted to my masks, without them I do not know who I am.

The masks serve an important function. They protect my fragile heart. I am afraid that if I take them off, I may become weak and emotional, unable to provide my sons with fearless leadership and continuous critical care.

But lately the masks feel heavy. They do not feel real.  I am beginning to feel angry, bitter, resentful and tired. I have lost my desire to enjoy the play. I have lost my desire to enjoy this Game of Life.

The "me" beneath is struggling to be seen and acknowledged once again.

"Special needs parent" is a role I play, it does not define who I am.

When you are caring for others it becomes difficult sometimes to care for yourself.

At the end of my day can I remove my mask, put it back on the shelf and enjoy myself, my family and my life?

What is it in life that makes me happy?
Who are the folks that bring me joy?
Who is the real me and what do I look like?

These are the questions that finally bring a feeling of freedom, joy and peace to my heart.

Can I begin to understand the interesting and accomplished actor who resides beneath the mask?

Will it help me to enjoy this part I am playing, meeting each challenging day with a sense of enthusiasm and discovery, knowing that this day, this moment (good or bad) is exactly what was meant to be?

Can I learn to enjoy this Game of Life?

Click icon below to visit me at Hopeful Parents

Fasten your Seat Belts, It's Going to be a Bumpy Night

Forecasters have been predicting it for days. We have watched endless weather reports and updates.

It looks like Hurricane Sandy is on her way toward our area with a projected landfall in the New Jersey/New York area.

What does that mean for us here?

The storm is scheduled to occur here on Monday and Tuesday. It should reach it's maximum potential in this area sometime around Monday evening. So fasten your seat belts folks, it's going to be a bumpy night.

By Monday, Hurricane Sandy will have merged with an oncoming Nor'easter, to produce a type of hybrid storm....a Nor'estercane....so to speak. The storm will have the intensity of a hurricane but it will behave more like a Nor'easter spending it's time just sitting over our area. We are expected to have 36 hours of sustained winds of 50 mph or more with gusts over 70 mph. Folks in New Jersey will see far worse.

I have never seen a storm like this one before.

The wind field will be several hundreds of miles wide, so where it officially hits is kind of irrelevant since the core winds will be felt by many of the surrounding states, ours included.

We will be on the side of the storm where there will be less rain but more devastating winds. The Governor of Massachusetts has already issued a "State of Emergency" to free up federal funds that may be needed quickly.

We will most definitely lose our power. I suspect it will be for a long time since the high winds will effect such a widespread area.

I will try to keep you all updated on the storm as much as possible until we lose our lights.

For those of you unfamiliar with preparing for a hurricane, here's what we do.

Bring in all lawn furniture, toys, gas grills, hanging plants, etc.
Fill up cars with gas since it could be weeks before power is restored to local gas stations
Get cash as banks and ATM's may not be operational.
Keep portable radio on hand.
Charge up cell phones, use car charger if necessary.
Stock up on nonperishable food.
Stock up on water for drinking and bathing....many folks around here have well water run by electricity.
Flooding can also contaminate water from wells.
Fill bathtubs with water for bathing.
Stock up on batteries for flashlights, radios etc.
Stock up on gasoline for chain saw, and generator use.
Expect basements to flood so pull up anything you do not want to get wet from the floor.
Remove dead branches or dead trees that are close to your home.
Clean leaves out of gutters
Board up windows if the home sits on the coast.
If winds are expected to be sustained at over 50 mph, sleep in the lower levels of the home or basement to avoid the potential of a tree falling on the house.

Nicholas's growth hormone requires that it be refrigerated. If we lose power for several days, his medication will go bad. Because of this, we purchased a gas-powered generator. It is important that we stock up with enough gasoline to keep it running for days, or even a week.

Once the storm hits, it's hunker down and ride it out.

I have been in several hurricanes, what I remember most about them is the sound of the trees snapping like twigs, the very loud roar of sustained winds, and the feel of the house swaying on its foundation.

Whatever Sandy throws our way, we are ready.
Stay tuned for more updates......

Buzzards Bay Massachusetts during Great Hurricane of 1938
file photo Boston Globe

Wednesday, October 24, 2012

Hurricane Roulette

Hold on to your socks folks, it looks like this latest hurricane is going to be a beauty, with the entire northeast now on alert.

The only question is...where and when is the monster going to land?

I have lived in New England for most of my life. Every ten years or so, we brace for a whopper. The typical hurricane pattern usually brings the tropical cyclone barreling up the coast, hitting the Carolinas or Mid-Atlantic states first before finally landing in the New England area.

This one however, is different.

This one has the potential to stay out over warmer ocean waters, gaining strength, with no landfall expected. A high pressure area may then block the escape route of the storm and actually push it backwards into the northeast. This is a first.

If the storm is blocked in place, it could mean days (instead of hours) of intense wind and rain, which will cause significant damage.

We are all on alert, listening intently to the latest forecasts, waiting to hear just where and when the storm will hit, and hoping it will not be us who bear the brunt of its impact.

Ironically, this storm comes on the anniversary of The Perfect Storm which occurred on October 30, 1991.

Will keep you all posted, latest forecasts so far indicate a Sunday/Monday arrival.

Saturday, October 20, 2012

Lack of Fever in PWS

There are a multitude of bizarre symptoms associated with Prader Willi Syndrome. But the one that scares me most, is the lack of fever in the presence of infection.

Combine this with yet another bizarre symptom, a diminished ability to feel pain, and it now becomes difficult for a parent of a child diagnosed with PWS to know when their child is very sick. Their weakened immune systems can further complicate this issue, creating a very real, even life threatening situation.

I was once  again reminded of this last week.

Before starting his new school, Nicholas developed an illness.

Again, since Nicholas does not present with a fever, I could not be sure if it was viral or bacterial.

But after ten years of observing my son, I have begun to notice the subtle "quirks" that indicate to me that he has acquired an infection.

The first thing that happens to Nicholas is a complete shut down of his gastro-intestinal track. He stops having any kind of bowel movements for days, even though he takes daily doses of ex-lax and miralax.

When this happens, it is my cue, that Nicholas is getting sick. To me, this is Nicholas's version of a fever.

The next quirky symptom that Nicholas develops, is a swollen gland, particularly on his left side. This is the second time, it has swelled beyond normal size in response to an infection.

Since it had been a few weeks that Nicholas was sick and I had now seen both "infection indicators" I called Nick's doctor to schedule a visit. Unfortunately, our pediatrician was not in the office so we had to visit with one of the staff physicians who was not familiar with Nicholas or PWS....something I hate to do but since Nick was suffering, I decided to bring him for a visit.

I told the doctor that Nicholas had a sore throat, swollen glands, runny nose, constipation and fatigue. I explained that children diagnosed with PWS do not always develop a fever in response to an infection and that he had been sick for over a week. I was concerned he had an infection.

He did not take me seriously and since Nicholas did not present with a fever, or seem uncomfortable, he diagnosed Nick with a virus and sent us home. He did not perform a strep test and told me it was not unusual for some viruses to last for several weeks.

We went home without a strep test, without blood tests and without antibiotics.

After our visit to the doctor, Nicholas's swollen glands began to grow to an alarming size, he developed a stiff neck, severe diarrhea and experienced blood in his nasal discharge. It was back to the pediatrician's office we went, only this time, we visited with our long-time pediatrician who is very familiar with Nicholas and PWS.

She examined Nicholas and became alarmed when she discovered that his left gland had swollen to 7 centimeters. But again there was no fever. She immediately performed a strep test and ordered a barrage of blood tests, fearing that perhaps this could be a tumor or an abscess. She started him immediately on a very strong antibiotic and requested we return to see her the following week. She also asked that I call her immediately if his gland swelled any further.

That night, our pediatrician contacted me to let me know she received the results of his blood tests and discovered an increase in his white blood cell count, pointing to a possible infection and not a tumor. Phew.

The next day the 24-hour strep test also came back positive. Phew again.

The "big guns" antibiotic, Nicholas was taking began to do the trick. His swelling was down, his bloody nose gone and his color returned to his cheeks. Our pediatrician called again to see how he was doing.

She is a cracker jack of a physician; incredibly smart, thorough and well-versed at developing quality health plans for Nicholas. We work very well together and have easily handled many difficult medical issues together. We share a true partnership and I trust her completely. She values my inputs. She always takes me seriously and never makes me feel as though I am a neurotic, antibiotic-seeking mother.

She also explained that since Nicholas had his tonsils and adnoids removed, she was not surprised that his lymph nodes were swelling. The tonsils/adnoids serve as a type of sentry soldier she said, swelling in the presence of viral or bacterial infection. Since Nick's had been removed, his lymph nodes were now serving as the soldiers and she was pleased to see that they were doing their  job.

Getting some medical professionals to see my child as "unique" in his need for medical treatment has been a difficult challenge for me, as it is (I am sure) for all parents of children diagnosed with special needs.

I have found that finding the right pediatrician and medical specialists is the important key to success.

I have learned that much like Donald Trump, it is important to keep only the BEST team players.

And although this greedy tyranical business man, is not my idea of an appropriate role model or human being, I am learning that I do need to embrace his philosophy of telling those who do not measure up and take me seriously...."YOU'RE FIRED!

My son's good health depends upon it.

Thank you Dr. Bhathena, you are very special to us.
p.s We have discussed adding notes and guidelines to Nicholas's chart from Dr Bhathena to the other physicians in the practice. Thank you for your suggestion Guilia..great minds think alike.

Thursday, October 11, 2012

The Skeletellectual

For the last two Halloween seasons, Nicholas has taken his costume cues from his older brother Weston. Being a teenager, however, Weston is all about the gore...a sharp contrast to Nicholas and his kind and gentle spirit.

In true younger brother fashion, Nicholas tried his hardest to emulate his gory ghoul-loving sibling, wearing scary masks and costumes that did not reflect the true sensitive personality underneath. A brave little soldier, he suffered through his sensory issues and wore scratchy, smelly masks that made it difficult for him to see and breathe.

This year however, for the first time in his life, Nicholas has decided to ditch this adoring younger brother persona and finally embrace his own unique style.

"How about this one?" I asked Nicholas as we scanned the ransacked racks of Halloween costumes at our local party store.

"No, Mom, that's too creepy,"he said shielding his eyes from the gory ghost mask.

I searched further and found a silly Mummy costume. While the mask was much less macabre, the costume had rows and rows of flowing bandages, a definite negative for a sensory-sensitive costume seeker. But I thought I would try just the same.

"How about this Mummy guy? He looks happy?"

"No Mom, he's too scratchy." Nicholas replied.

"A Ninja? A robot?" I asked hopefully.

"No Mom!" Came Nick's sharp response.

I was getting desperate

"Well I don't know Nicholas, we're running out of options here."

I turn the corner reluctantly, headed toward the next aisle of lame Halloween costumes when suddenly, I spot the glow-in-the-dark display.

"Nicholas, LOOK!" I said enthusiastically.

There amidst the strands of pumpkin lights and orange flashlights  was a pair of battery-operated light-up eye glasses.

"Cooool" said Nicholas, who is, as you know, attracted to all things that glow.

He quickly tried on a pair of the plastic glasses and turned on the magic button.

They fired up brightly with a warm fluorescent blue glow and I realized we had finally found what we were looking for.

"These are so cool!" Nicholas said smiling from ear to ear.

I grabbed the glasses and headed toward the check-out counter when I spotted a display of Halloween hoodies. They were black cotton, zippered jackets perfect for kids with sensory issues. On each jacket was a Halloween design.

Hey Nick, look at these, I said and once again, the kind-hearted Nicholas was smiling from ear to ear.

"Which one would you like?"

Since the jacket was similar to one he wears every day, he now had the courage to be as scary as Weston. He picked out the creepy skeleton hoodie. And for under $10, I now had the perfect Halloween costume for Nicholas.

This Halloween Nicholas will embrace his true and unique self to become....... the skeletellectual, the scary, smart, kind, sensory-sensitive lover of all things that glow!

It never ceases to amaze me that my success or failure as a parent of a child with PWS is directly proportional to my ability to solve a problem.

I wonder what's coming next?

Happy Halloween to all our readers.

Tuesday, October 9, 2012

Autonomic Nervous System Dysfunction and Prader-Willi Syndrome

As many of you already know, as part of his Prader-Willi Syndrome diagnosis, Nicholas also suffers from sub clinical seizure activity during sleep and was diagnosed with ESES (Electrical Status Epilepticus of Sleep Syndrome) when he was just 4-years-old.

Since that time, Nicholas has been followed by Dr. Masanori Takeoka, a Pediatric Neurologist at Children's Hospital in Boston.

Dr. Takeoka is a very patient man.

Our typical appointment with him usually lasts for well over an hour as I bombard him with thousands of questions and observations of Nick's latest quirky symptoms.

Nicholas experiences many unusual symptoms like shivering spells, chronic fatigue, blood clotting issues. urination difficulties, constipation, lack of fever, sleep issues, lack of saliva and a reduced ability to sweat.

Lately however, as I mentioned in previous posts, he is suffering from more debilitating issues like anxiety and concentration difficulties, things that make it difficult for him to learn.

As I rolled off an unusually long list of complaints to Dr Takeoka, he mentioned to me that most of these unusual issues relate to a dysfunction with the Autonomic Nervous System (ANS). He explained that since Prader Willi Syndrome is a brain disorder stemming from a problem with the hypothalamus, an accompanying Autonomic Nervous System (ANS) dysfunction would certainly make sense.

According to Eduardo Benarroch and the Dana Guide to Brain Health:

Our autonomic nervous system is essential for our survival. This system of nerve cells continuously monitors and controls our visceral organs: the heart and blood vessels; the pupils; the glands for tears, saliva, and sweat; the lungs’ bronchi; the stomach and intestines; the bladder; and the sexual organs. Control of these organs regulates our bodies’ response to exercise, emotion, and environmental challenges. Several areas of the brain are involved in the working of the autonomic nervous system, including the cerebral cortex, amygdala, hypothalamus, brain stem, and spinal cord. Neurons of the brain stem and spinal cord send nerve fibers to the autonomic ganglia, which, in turn, send nerve fibers to all visceral organs.

To read more from The Dana Foundation website and the Guide to Brain Health, read here:

So, in true, "Lisa fashion", I performed some Internet research. I looked for specific information and studies on ANS dysfunction and each of Nicholas's unusual symptoms.....and guess what?

I am amazed at what I found!

For example,

Here is a link to a study that connects sleep problems (early wakening, sleep apnea) with ANS:


Here is a link to a study on breathing issues during sleep and ANS:


Here is a link to a study that connects epilepsy to ANS:


Here is a link to a study that connects slowed gastrointestinal and urinary issues to the ANS:


Here is a link to a study that connects Chronic Fatigue Syndrome to ANS. I was particularly interested in what this study had to say about the difficulty some patients have with standing and concentrating:


Here is a link to a study that connects a lack of sweating, shivering and thermoregulation to ANS:


Here is a link to an article that discusses bladder control issues and ANS:


Here's a link that even connects reduced blood clotting capacity to ANS:


And finally here is a study that connects anxiety and depression issues with ANS:


Interesting connection huh?

I am happy to report that our National PWS organizations are also interested in this connection.

Dr. Andrea Haqq is a Pediatric Endocrinologist located at the University of Alberta in Edmonton, Canada.

Here is some information about her program:

She has written this amazing article about the connection between obesity and the ANS:


Currently, she is seeking patients diagnosed with Prader Willi Syndrome to further investigate this connection. Results of her continuing studies will have an effect not only on individuals diagnosed with PWS but also on the complexity of obesity itself and how we can better treat all individuals who suffer from this condition.

Selfishly, I am interested in her study of this connection to learn more about a possible treatment for all of my son's issues that may be related to this dysfunction.

I guess what I learned that is most distressing to me, is that a weakened ANS causes a type of repressed breathing and an overall sensitivity of the body to fight things like infection.

So, in discussing this with Dr Takeoka he agreed that Nicholas needs to avoid medications that further suppress his breathing since there is a very real possibility for him to stop breathing during sleep, another condition related to ANS dysfunction. Nicholas was having trouble sleeping and we were considering possibly medicating him to help him stay asleep longer.

Since Nicholas also has epilepsy, I was now very concerned. SUDEP (or sudden unexpected death in epilepsy) is a condition that all parents who have a child diagnosed with this epilepsy understand. I asked Dr Takeoka if this further increases his risk. He explained that since Nicholas does not have convulsions, he has less of a risk here, but more of a risk of ceasing to breathe due to ANS dysfunction.

Fighting infection is also difficult for individuals with a weakened nervous system. He explained that once Nicholas gets an infection it is important that it is treated immediately and aggressively. He also recommended that immunizations are spread apart and not given all at once since it can overwhelm his sensitive system. He reinforced the importance of him receiving them however, since his risk for acquiring infection is very high.

He recommended that all children diagnosed with PWS be followed by a Neurologist who in turn should work closely with a child's pediatrician to ensure that these issues are clearly understood by all parents.

Once again, I am reminded of the hidden angels among us who work for the betterment of all.

Saturday, October 6, 2012

It's Finally Over!

I am happy to report that we have finally reached an agreement with the school.

For the first time in a year and a half, I can finally breathe.

Nicholas begins his new school next week.

Unfortunately, however, as part of the agreement, I am not allowed to speak about any of it.

It has been a long exhausting process. I am physically, emotionally and mentally drained but absolutely confident that all of us have made the best decision possible for Nicholas.

He is very excited about starting his new adventure. He visited his new classroom last week, where he related very well to several peers and seemed very relaxed and comfortable. The new school personnel have been very warm and welcoming.

Of course, now that it is all over, and I have finally stopped long enough to catch my breath, I have developed a nasty case of laryngitis. It has served however, as a wake up call for me. Or perhaps a giant bop on the head is a more appropriate description.

I have been neglecting myself over my children for a very long time. With Nicholas's recent issues, I didn't have much choice. But I have now decided to begin taking better care of me. Today, I scheduled my first physical in very long time. BC (before children) I was very conscientious about yearly physicals, dental appts, hair appts and eye exams. Lately, I have become negligent and realize that this trend needs to stop. I believe many parents of children diagnosed with special needs face the same dilemma; how do you care for yourself while also caring for medically complex children?

For me the answer is: trying to master the schedule. Over the past few years of appointment madness, It is now absolutely necessary to schedule in down time, alone time, fun time and medical appointment time for myself as well as my children. I am in definite need of a tune-up and some high maintenance (for a change.)

I am hoping this new change for Nicholas will bring me some of that precious time.

I m hoping to find some peace.

Monday, October 1, 2012

The Lighting of the First Fire Ceremony

Oh, I almost forgot...

For Nicholas, there is yet another equally important aspect of the Magic Season.

It is the all important First Fire Ceremony.

This important "lighting of the first fire" signifies the true commencement of the Magic Season Festivities.

In fall, evening temperatures here in New England start to drop. Early morning temps become downright chilly. So, it is not unusual after a long summer, for folks around here to begin using their fireplaces once again.

This morning, as we jumped into the vehicle to take Weston to school, sure enough, there was a white swirling smoke emanating from our neighbor's chimney and the familiar smell of burning wood. These important signifiers did not escape the keen senses of my fire-loving son.

"LOOK Mom, our neighbors are having a fire! Can we have one? Can we have one?"

Yes, building a fire in the fireplace is yet another magical aspect of the October through December holiday allure that brings such joy to Nicholas.

All summer long, Nicholas laments about the empty fireplace, longing for the days when we can fill it with logs that crackle and glow. He anxiously awaits the arrival of fall. But since he does not have a good understanding of the concept of time yet, he looks for things in his environment that signify the coming of colder weather, things like pumpkins at Paisley's and white smoking chimneys.

Now that he had seen both, it was time for us to light our ceremonious fire.

Only problem was, since it is still early fall, hubby hasn't begun his pre-winter chore of chopping wood, leaving me sans wood to start our official ceremony.

But in true quick-thinking PWS Mom fashion, I searched the garage and much to Nicholas's relief, found an errant box of Duraflame logs. Phew!

So.....nothing up my sleeve........watch me pull a rabbit out of my hat.....presto....our first fire of the season and the official commencement of The Magic Season!

And of course, a very happy boy!