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.

Monday, November 29, 2010

A Trip Back in Time

We have returned from our Thanksgiving stay at the Mount Washington Hotel in New Hampshire.

It is a big, beautiful stunning hotel.

It truly felt like we had taken a trip back in time.

Inside the hotel, there are several wide staircases with soaring ceilings framed by large windows.

 The crystal chandeliers and hand-crafted archways, a reminder of quality craftsmanship of days long gone by.

Look at the carvings on this column (below). This is part of the large lobby area.

Christmas trees and decorations filled the hallways and staircases, making the hotel feel festive and warm.

Several large fireplaces crackled and roared as guests pulled up chairs to warm in their glow. Of course, no one appreciated this more than Nicholas. Notice his backpack. A backpack and a fireplace....Nicholas was truly in heaven.

When we arrived at the hotel, the bellman tried to take Nicholas's backpack....big mistake as Nicholas screamed bloody murder on the large beautiful veranda entrance of the Mount Washington Hotel. The bellman, now horrified.....did not know what to do. He seemed very confused when I simply handed Nicholas his backpack (his most trusted transition item) and he immediately stopped crying. Ahhh life with the Peters family is certainly never dull....or quiet.

The front desk (below) again a reminder of days long ago.

The massive porch would have been a lovely place to sit and rock except unfortunately the temperature outside was a balmy 28 degrees! I am a terrible mother and made my son come out quickly in the freezing cold to snap this photo. Doesn't he look cold? And we were out for only about 15 seconds!

Of course nothing is ever perfect, and in true Peter's fashion when we arrived at the hotel, our room wasn't ready. I told the front desk clerk that I spoke with someone the day before and they said our room was unoccupied and we should have no trouble checking in. She said while that was true, today, they were changing the locks to a new sweep card system. "Now? You do this now?" I ask, "On the busiest check-in day of the year?" I don't think this was one of the best business decisions this hotel has ever made.

I tried to explain that I had two anxious/excited children both of who had problems with transitions. After a 3 hour car ride, this was not a good situation. We waited for almost an hour. Thankfully, the hotel manager finally called us to the desk and apologized. She offered us dinner (on the house) at Stickney's one of the restaurants downstairs. If she had not done this......we would have left this hotel since both boys were off the wall at that point. Thankfully, there was a lot to see and do downstairs.......

On the lower floor was the brick hallway where bars, restaurants, shops and even an arcade was located. This is where Stickney's is located. The food was delicious here.

Off the brick hallway is a bar (below) called the Cave. Cool, huh?

The toy store on the left and the sweet shop on the right. Also off the lower hallway.

The pool, hot tub and spa area are also located on this level. One of Weston's favorite activities was swimming in the pool. Unfortunately for my husband, all he heard for our entire stay was 'Dad, when can we go in the pool?" More than a few times, he had to put on a wet bathing suit.

Our room when we finally got there (below)..... The hotel has really done a nice job of keeping the nostalgic architecture. Notice the double doors and door frames? A very nice touch. Nicholas however, just remembers the room number....319. His memory is amazing....I wish I had it. He was very excited to tell his teachers all about his adventure in 319!

How about that new lock, huh? Hard to believe we waited an hour for them to change this????

The hallway (below)....Weston and my husband, Pete....notice their feet? They both have the exact same gait. Like father, like son, I guess.

Throughout the hotel were old photographs and antiques all from the earlier days. Since it was built in 1902, there were plenty of photographs and antiques to admire.

On the left is a photo of Weston admiring some of the photos on one of the large stairwells.
On the right is just one of several antiques strategically placed throughout the hotel. This one was on the second floor landing.

And of course.......the views! This is the Mount Washington range.....breathtaking. The photo does not do it justice. Every day this view looked a little different and a little more beautiful.  The white building on the right is the "spa" area and behind it is a heated outdoor pool. There are also paths and walkways around the entire hotel...good for walking off a holiday meal.

The Thanksgiving meal was exceptional. Here is photo of the buffet......mmmm! Again notice the beautiful architecture, the archways of the second floor, the lovely chandeliers. Weston pointing at the dessert area, Nicholas too busy eating to notice.

Dessert........even better!

Both boys enjoyed the meal.

Of course no Thanksgiving is complete without Santa....

Where Weston proceeded to tell Nicholas it was not the REAL Santa, since Santa does not have a pimple. Nicholas then began to scream "Muuummmm" and our cozy little "Santa moment" ended abruptly. Just seconds after this photo was taken.

We went off to bed with full tummies, listening to the sound of the folks upstairs walking across the creaky floors. One very big drawback to staying in an old hotel. The folks above us sounded like a herd of elephants walking back and forth. If we return we will most definitely stay only on the top floor!

That night, the winds howled and we woke up to snow the next morning.

Our visit to this hotel was a once in a lifetime experience for our family.
It is an adventure we will never forget, truly a trip back in time.

Wednesday, November 24, 2010

"My Deadly Appetite"....Update on William Weaver...Leave a Message for William and his Family

To read my post about William's parents click here

This post is dedicated to Momma and Papa Weaver

Many of you may have watched “My Deadly Appetite” on the Discovery Health Channel this month. It is the touching story of William Weaver, a 14-year-old boy diagnosed with Prader Willi Syndrome.

For those of you who have missed the episode it will air again on the Learning Channel (TLC) on December 1 at 8 pm.

William leaves his home and family for the first time in his life and is admitted to the Children’s Institute in Pittsburgh, Pennsylvania for a 3 month stay, where he is treated for his obesity and behavioral challenges, symptoms that accompany PWS.

During the episode, William is successful in learning skills to manage his weight and control his behavioral outbursts. He loses 60 lbs. and returns home as a happier and healthier young man. It is a very touching and beautiful episode.

My post today, is the story of William Weaver’s journey home.

It is the story of one boy’s desire to continue to change his life and the lives of others.

I thank William and his special family for allowing me to share the inspirational story of his return home to his family and friends, his hard work in losing even more weight and his spiritual journey to uncover the true meaning of life.

This is my interview with my dear friend, William Weaver.

“It been hard,” William tells me, and in his voice, a touch of sadness.

“It been aggravating.”

“I was away from my parents and friends, first time away, ever.” William describes his visit to the Children’s Institute and his first time leaving his home. In his voice, sadness and honesty. He remembers the hardships but tries to stay positive by remembering some of his happier moments there.

He quickly recalls his Mom and Dad's first week long visit with him in Pittsburgh. There is a childlike innocence about him as he speaks.

“When my Mom and Dad came to visit me at Pittsburgh for one whole week, I went to get my haircut. Oh my God, I am in the best place in my life. The girls there wash my hair. They condition my hair. Oh my God, I am in love with them. The girl who cut my hair was a Babe! I still have her picture on my wall. She was a fancy, fancy girl!” William giggles.

When asked about his time at the Children's Institute, it is the kind people William recalls most, key individuals who helped him to cope,

“I like Christine, my PT (physical therapist). We start out on wrong foot but then I like her. I make lots of friends. Brittany, my girl friend and Corey, my aide, I love him. I miss him a lot.”

In talking with William, it is clear that the time he spent there was difficult. When asked about his toughest moments, he explains in just three words.

“The quiet room.”

“A rubber room without the rubber,” is how his mother, Faith describes it.

It is clear that William prefers to talk more about coming home, and as he does, he shines,

“Now that I am home,” he says, “Now, I……..FEEL……..GREAT!”

“Lots of people happy for me,” he says. “I am so happy to be home with my family and my dogs, Goliath and Belle.”

His Mom, Faith happily reports that since leaving the Children’s Institute, William continues to lose weight.

“Since May, William has lost a total of 94 lbs!” she explains. “For the first time he can wear store bought jeans.”

William explains with excitement and glee,

“Oh my God, one night my Mom brought me to the mall. I tried on jeans. I looked in the mirror. I have a bunch of happy face. I held my hand to my mouth. I say, Oh my God! Oh my God!”

Faith tells of the tender moment she shared with William in the dressing room.

“When we looked in the mirror, both of us were crying.”

Faith attributes William’s weight loss success to being vigilant about using smaller portions and adhering to his diet. She explains that both the Children’s Institute and the National Organization for PWS encourage the use of the Red, Yellow, Green Diet for losing weight.

Also referred to as the Traffic Light Diet, this program teaches the user which foods should be avoided and which should be consumed in greater portions. Red Light foods are high calorie foods which contain few nutrients and should be avoided. Yellow Light foods are high in calories, but also high in nutrients which make them good to eat in moderate quantities. Green Light foods have lots of nutrients with only a low amount of calories.

“When William came home from Pittsburgh,” Faith explained, “I was scared to death. But we knew we had to stick to the program.......With (PWS) children if there is even a fraction of a chance they can get more food, they will do it.”
Faith explains how she initiated a new meal plan at home for William.

“The Institute provided us with his first few meals for our trip back home, after that we just stuck to the plan.”

Faith explains that the first meal William wanted when he came home from Pittsburgh was hamburgers on the grill.

“I got out the scale out and measured 1 ounce of meat. Do you know how much 1 ounce of meat is? Faith asks, “It isn’t much......But the great thing about the red, yellow, green diet, is all the side dishes he can have.....With the salad and vegetables and sugar free Jello, there really is a lot of food he can eat.”

Faith credits William’s continued weight loss success to the entire family working together.

“As a family, we all got on the same page. No deviation. We do a lot of menu planning as a family. We make our menu up one week ahead of time so everyone has a chance to eat what they want. Then we just stick to it.”

She explains how when William was first born she wasn’t ready to accept his diagnosis.

“I wish we had taken this syndrome more seriously in Will’s first few years of life. At that time, I was in denial, I thought that William would not be affected. Now, I know better. I wish I had started him on a healthier diet right from the beginning, with lots of vegetables and less macaroni and cheese.”

 Since coming home, William has increased his level of activity.

“I am a different kid” says William, “My face completely thin. My fingers are longer. I run faster than I used to, but now I feel I run faster and faster.”

“At home, he loves to walk the dogs,” Faith explains, “We also got a new tire for his three-wheeler. He rides it around and around the neighborhood.” Our church also has a gym with lots of exercise equipment and a walking track.”

William has accomplished the 94 lb weight loss and behavior management all without any interventions, no growth hormone injections or new behavioral medications.

“He did this all on his own.” Faith proudly explains.

William participated in a Challenger Baseball League during the fall and joined a Special Youth Outreach Soccer team that played from September to November.

“I play soccer,” William tells me proudly, “I like running and losing weight. My coach say to me, hustle, hustle, hustle and hit the ball, so I really do. I like soccer. I like baseball too. I like hitting the ball. I hit Grand Slam really far over first baseman’s head. I hit it way up in the air. He couldn’t get it and it was a Grand Slam.”

William explains that while he has lost more weight, it is still difficult for him to keep calm.

“I feel grown-up and more mature, but it is still hard to control my anger.”

 Faith explains that while William does still get upset, he has come a long way in improving his behavior. In fact, when asked, what makes Faith the happiest since Williams return, she replies:

“Seeing William get upset.”

“ I know that sounds funny, but thanks to the Children’s Institute, he now has the tools he needs to recognize when he is upset. He knows how to diffuse his anger and that’s huge! In the past, if William had a meltdown it would take the whole day to recover. Now he knows how to calm himself down and just move on.”

Other changes since coming home include a new school for William. It is a public school for children diagnosed with special needs. There are six children in his class and three adults that include a paraprofessional just for William. Exercise is also incorporated every day into William’s school schedule.

Although William’s success has been amazing, Faith reminds us that PWS is a lifelong condition and even though weight and behavior issues are managed, caregivers still need to be vigilant.

“There was an incident at home the other day where some pasta salad was accidentally left out.  In the morning, I found the empty pasta bowl underneath Will’s bed. People need to know that although William has had much success, he still has Prader Willi Syndrome and that will never change.”

William talks about the gift he gave his Mom while he was at the Children’s Institute.

“I bought the gift with my own money, store money I earned while I was there. You can buy soaps and shampoo and stuff like that. I bought lotion. Lotion that I bought to show how appreciate I am that Mom did all this for me. I told her that! I have good parents.  They love the most and they don’t want me to die.”

William shares his deeply personal and spiritual perspective with me.

“My Mom and Dad take me to Sunday School. I have my own Bible. I want to learn more about God. I pray and pray for God help me in school. I pray help my family. When I pray to God, 6 lbs I lost on that day. God helped me lose all that weight.”

He talks about the growth he has experienced on his soulful journey losing weight and becoming a young man who is filled with love for his family, his Creator and the world.

"......Jesus turned me into an angel and let me speak to the kids." William explains to me privately. 

As he shared this spiritual thought with me, I wiped the tears from my eyes and thought to myself, perhaps there are hidden angels living here in disguise upon this earth. And perhaps these earthly angels are not born with white robes and golden halos. Perhaps they are born with genetic illnesses and cognitive delays. Perhaps they are born with Prader Willi Syndrome. Perhaps they are placed here on this earth to truly educate the world, to speak to the few individuals who will take the time to listen to their stories. Stories about the importance of faith and hope and most importantly, love. These are the things William talks about. These are the things that are important to him.

To me, I have found one of these hidden angels.

To me, his name is William Weaver.  


I would like to thank William and his family from the bottom of my heart for sharing his story with the world.

William’s family includes his mother, Faith, his father, William Sr., his sister, Ericka, who is 13 years old. She is a straight “A” student, a member of the National Honor Society and the Student Council. She was voted MVP in tennis and won an audition at her school play. He also has a brother Michael, age 31, brother, Steven, age 27, and brother, Donnie, age 22.

If you would like to leave a message for William, please leave a comment on this post. I will forward all posts to William and his family. Please, good wishes only.

Please leave a message…….Let’s give William and his family, the support and encouragement they deserve for sharing their very touching and personal story with all of us.

God Bless the Weaver Family!

Sunday, November 21, 2010

The Mount Washington Hotel

This is the Mount Washington Hotel located in the White Mountains of New Hampshire. Nice, huh?

To see more Mount Washington Hotel photos and read about our Thanksgiving stay click here.

From their website:
It was built by New Hampshire native Joseph Stickney, who made his fortune in coal mining and the Pennsylvania Railroad. Stickney spared no expense in building the imposing hotel. The latest design and construction methods were used.

Ground was broken in 1900 and construction was completed in 1902. Two hundred and fifty Italian craftsmen, skilled in masonry and woodworking, were brought to Bretton Woods and housed on the grounds.  Imported china, hand-colored postcards and playing cards and a 1917 travel guide -- genteel mementos of an elegant legacy. On July 28, 1902, the front doors of this Grand Hotel opened to the public with a staff of no less than 350.

The Hotel has been host to countless celebrities, including Thomas Edison, Babe Ruth and three U.S. Presidents.

The Mount Washington Hotel was listed in the National Register of Historic Places and 6,400 acres of beautiful woodlands were sold to the United States government for inclusion in the White Mountain National Forest.

In 1986, the United States Department of the Interior recognized the historical and architectural significance of The Mount Washington Hotel with a National Historic Landmark designation.

In 1991, a new chapter in the Hotel's history began as a group of New Hampshire businessmen joined forces to purchase it and the surrounding property to ensure its place in the 21st Century. Subsequent purchases of the Resort's two golf courses, surrounding development land and New Hampshire's largest ski area, Bretton Woods, successfully reunited all original Resort properties.

Making history once again, The Mount Washington Hotel opened for its "First Winter" season ever, beginning Thanksgiving Day, 1999!

Now, in 2010, for the first time ever, the Peters family will be staying here for Thanksgiving. Cool, huh? Don't worry, I'm bringing my camera.

This month has been a very difficult one for all of us. Weston struggled with a potential new diagnosis and middle school transition difficulties. Nicholas had several physical issues including an increase to his growth hormone therapy. I am overwhelmed with caring for my children and my mother. And as for Pete, it has been nothing but work, work, work.

It is time for a mini family vacation.

Weston, my nature boy, loves New Hampshire, sine there is so much to see and do there.

Nicholas is excited because.............you guessed it..........there will be no shortage of fireplaces!!! There are several in the dining areas and lobby. And even one in our room!

There will be lots of games and activities planned at the hotel for the family to enjoy. The boys were both excited to learn that Santa Claus will also be making a visit here. (Although Weston is still keeping the secret for Nicholas)

For me, I am just happy I do not have to shop, clean, prepare, cook, and wash dishes. For the first time in a long time, I can just relax.

This is the Great Hall where Thanksgiving dinner will be served. I can taste the turkey already.

The forecast for New Hampshire on Thursday........snow!

Not a lot, just enough to make it a festive holiday. Needless to say, I am really looking forward to our visit. I plan on taking lots of photos for all of you to see.

I think mostly, I am looking forward to just walking the grounds and having some quiet time.

A very happy and safe Thanksgiving wish to all!

Saturday, November 20, 2010

A Tic Tac a Day......

As I mentioned in a previous post, my Mom, Evelyn suffers from dementia. Some of the symptoms of dementia are perseveration (focusing on the same thing over and over), obsessive/compulsion issues and of course, forgetfulness.

One of Evie's compulsions is aspirins. As she is aging, like most other elderly individuals, her body aches. So, of course, she wants to take an aspirin. The only problem is, she forgets she has taken them, and as a result, if left unattended, she would unknowingly take an entire bottle of aspirin. So, unfortunately, her caregivers must now ration the aspirins.

As you can imagine, this does not sit well with Evie, especially for a once strong-minded, intelligent, independent woman of 77 years of age.

"What do you mean, I just took an aspirin?" my mother asks. "Why can't I have an aspirin?"

The caregivers usually try to answer quickly and then distract her.

"We just gave you an aspirin and taking too many aspirins is not good for your body. Do you want to come take a walk?"

Evie, not willing to succumb easily to any kind of distraction, answers.

"No, I do not want to take a walk, just give me some DAMN aspirin!"

And so it goes.

As a mother of two children diagnosed with special needs, unwillingly, I have learned clever ways of avoiding tantrums. In fact, after years and years of finally figuring out how to redirect an angry child, you get pretty good at solving a problem using a creative approach.

While picking up a few items at the grocery store for our mother, my brother, John and I decided to try a creative approach to solving the "aspirin" problem.

"Let's buy a big aspirin bottle, empty it and fill it with candy." I suggest.

"Great idea," Johnny answers.

"Yeah, but what kind of candy looks like an aspirin?" I answer unenthusiastically.

"I know!" John exclaims, "How about some Tic Tacs!"

"Yeah!!!!!! That's it!" I answer.

Giggling like children, we select a large bottle of aspirins from the shelf. We then head for the candy aisle. And there on the shelf are boxes and boxes of tiny, minty, white Tic Tacs. We grab about 50, still laughing like children.

We check out with our groceries and head to the truck where we empty the bottle of aspirins into my purse. One by one, we open the plastic Tic Tac containers and shake them into the aspirin bottle.

"Chk, Chk, Chk, Chk," as package after package of Tic Tacs are poured into the empty aspirin bottle.

"She's gonna know." Johnny says.

I "don't know," I answer "She doesn't see too good these days"

Then I think back to the "original Evie", the woman who could read six books a night and complete the most difficult of crossword puzzles.

"You know, I said to John, "the OLD Evie would know in a heartbeat."

"I was just thinking that," John said sadly.

"Chk, Chk, Chk," we continue pouring the last of the tic tacs into the aspirin bottle. We screw on the cap and admire our aspirin bottle facsimile....

"Looks pretty good!" I say.

"I don't know, John says, "what about the smell? They smell like mints. She's gonna know."

"We could tell her they're a new kind of aspirin." I answer, unsurely.

We drive to our mother's assisted living facility doubtful that our aspirin scheme will work and silently fearing for our lives.

We talk to the nurses and educate them on our latest aspirin ruse. They smile and it is clear to me, that like me, these nurses are also familiar with playing the "anything to avoid a tantrum" game.

"Let's try it," they say, happy to try anything that will alleviate the wrath of Evie.

"Evelyn, they say, "we have some aspirins for you." They hand her two tic tacs and a bottle of water.

"They smell funny", Evie says, ever the sharp minded woman. Oh no, I think, we're doomed as I prepare for my lashing.

"Oh", the nurse responds quickly, "that's because these are mint aspirins, they help to soothe your stomach." the clever nurse replies.

I hold my breath, waiting for my mother to explode......

'Well you know what they say...." my mother says.."an aspirin a day," and she swallows the tic tacs.

Johnny and I let out a long breath. phhhhewwwwwww.

As we travel back to our homes, Johnny says,

"Ya know, the next time we come back to visit Mom, instead of taking their aspirins, I bet the entire dementia floor, will now be taking their daily dose of Tic Tacs."

I wonder what the manufacturers of Tic Tacs would think about this new use of their product?

Monday, November 15, 2010

La Monstrua

Shown below on the left,  is a portrait of Dona Eugenia Martinez Vallejo. This was created by the Spanish baroque court painter, Juan Carreno de Miranda (1616-1685). It was painted in 1680, when she was 6-years-old. She was brought to the court of Charles II of Spain and given the name, "La Monstrua" or "The Monster".

Nicholas John Peters in 2010 at 8-years-old
 Eugenia Martinez Vallejo in 1680 at 6-years-old

It is said that upon seeing this painting in a museum in Madrid, Dr. Andrea Prader immediately recognized her features to be consistent with Prader-Willi Syndrome.

Although we may never know if this child did in fact, have PWS, the painting and 17th century descriptions of her condition strongly support this hypothesis. This painting is often regarded as the earliest illustrations of PWS.

La Monstrua has continued to be an intriguing figure as evidenced by an outdoor sculpture in Aviles created in 1997 by the Spanish artist Amado Gonzalez Hevia who based his sculpture on Juan Cerreno de Miranda's portraits of Eugenia.

Shown above on the right, is my son, Nicholas in the year 2010 at the age of 8-years-old. (He is performing the Pledge of Allegiance).

It is amazing how far we have come in 330 years.

Once again, these photos are a true testament to the miraculous benefits of GH (growth hormone) to children diagnosed with PWS.

GH has allowed my son to become longer, leaner and stronger. It has helped with his fine and gross motor abilities. It has strengthened his spine and improved his scoliosis. He breathes and speaks better. His coordination and balance is improved. His overall strength and endurance is greatly improved.   

To put it simply, GH has allowed my son and many others diagnosed with PWS, to live healthier and longer lives.

It is important to remember however, that GH treatment does not assist individuals diagnosed with PWS to control their insatiable appetities.

For this, there is still no cure.

Throw Away Children

Infants and children diagnosed with Prader Willi Syndrome are often put up for adoption.

Our PWS community is always informed when one of these unwanted children is listed. A two-month-old baby boy named Luke, is the latest addition.

In a society obsessed with white teeth and zero percent body fat, it is not too difficult to understand why a child diagnosed with PWS is abandoned. The insatiable appetite, behavioral difficulties and potential for obesity is just too much hardship for some to consider. Caring for individuals diagnosed with PWS requires structure and vigilance from a family, it requires doctor visits, early intervention and therapy sessions. It is a big change to a family's lifestyle. It is just a sacrifice too difficult for some to accept. As a result, children with this awful disease are left behind, unwanted, unloved and abandoned.

Each time a child is offered up for adoption, my husband and I have the same conversation. We consider it. We consider it seriously. We know that there are not too many parents available on this planet who are familiar with feeding tubes and scoliosis. We know the chances of a child with PWS being adopted are very slim. We know that it is usually a family who already has a child with PWS that ends up adopting the child.

The following is a listing of Baby boy Luke. If you, or anyone you know is interested in adopting this beautiful child please contact Leslie below.

Thank you all for your consideration.

Baby boy "Luke"  born September 7, 2010
Born full-term at 39.5 weeks
6 lbs 4 ozs
19 1/2"

Baby Luke was diagnosed with Prader-Willi syndrome. He was discharged from the hospital on October 25th, and is with a temporary care family.  He is being fed by a g-tube and is doing very well. A speech therapist, occupational therapist, and physical therapist have been working with him weekly.  Both birth parents continue to express a strong interest in making an adoption plan for Luke.

Birth parents are educated professionals. Birth mom received excellent prenatal care of this planned pregnancy. No history of alcohol or drug usage. The birth parents are willing to consider an adoptive family residing anywhere in the USA. Their number one concern is that an adoptive family will have a great deal of knowledge about Prader-Willi syndrome and be ready to offer a structured environment in a loving home to their son with full understanding of challenges the child may face. Birth parents are not requesting an open adoption.

Please let us know as soon as possible if you would like to be considered as adoptive parents for this little boy.

Thank you,

Leslie Wright, MSW
Birth Parent Counselor
 Family Resource Center
5828 North Clark St
Chicago, IL 60660

Sunday, November 14, 2010

"Magic Juice"

Children diagnosed with PWS do not grow properly. They have short stature and are often obese. They do not burn calories efficiently, so they will gain weight while on a low calorie diet. An insatiable appetite combined with a lower metabolism leads to extreme obesity for individuals diagnosed with this bizarre syndrome.

Thankfully, there is a treatment option that has helped many children and adults diagnosed with PWS in maintaining a healthier weight. It is growth hormone injections or GH. We lovingly call it Nick's "Magic Juice".

There has been much controversy surrounding this hormone and its illegal use in the professional sports and entertainment industries. You may recall the accusations aimed at Roger Clemmens, Lance Armstrong and Sylvester Stallone. This issue has caused much grief for parents of children diagnosed with PWS. There is an effort now by lawmakers to further regulate and control the distribution of this hormone, making it more expensive and more difficult for us to obtain for our children. The current price for a yearly supply of GH is in the thousands of dollars!

The new treatment for children diagnosed with PWS is to start this injection of "naturally occurring hormone" in infancy so that our children's bodies and brains will grow more normally throughout their lives. This hormone increases muscle mass and helps strengthen our kid's bodies who suffer from low muscle tone. When you think about it, almost every bodily function requires the use of the body's muscles, ie: breathing, speaking, moving and even going to the bathroom.

Nicholas has received a nightly injection of GH since he was 4 months old. As a result, Nicholas has been able to maintain a healthy weight that is in proportion to his height. We met with Nicholas's Endocrinologist, Dr. Diane Stafford at Children's Hospital on Friday and have just increased his latest dose, since we have noticed an increase in his weight, some speech issues and constipation problems.

Many friends and family ask me if the shot hurts Nicholas. The answer is no, since Nicholas has received this injection every night since birth. He does not know anything different. We make a game of it, asking him which leg he wants it in and how it makes him big and strong just like daddy.

GH treatment for adults and children diagnosed with PWS has enabled these individuals to become slender and live longer lives. The photo on the left shows the incredible before and after photos of GH treatment results.

I guess if there is one thing I am the most thankful for this holiday season, it is for GH and its ability to give my son a longer, healthier life. Now if we could just find a cure for the insatiable appetite!

Friday, November 12, 2010

Thankful We Are Not Alone

I am contributing as a guest blogger today at the blog: Just a Little Bit Downsy. You will find it at:


Tiffany, mother to a beautiful daughter Elise, and owner of this beautiful blog, has started a wonderful new project called "Thankful We Are Not Alone." She has created a place for parents to share their stories with one another in an effort to feel connected on our journeys raising children diagnosed with special needs.

I asked her if I could contribute, and she said, yes!

Check out my post entitled: Mrs. Bissaillon.

Good luck and thank you to Tiffany for this project that will help so many of us parents to feel less alone!

Tuesday, November 9, 2010

I Just Want to Take My Son to the Dentist

Nicholas and I see many physicians and specialists in an effort to manage his symptoms associated with PWS. Most of our specialists are located at Children's Hospital in Boston. A simple trip to the doctor for us, usually involves a long hellish car ride fighting the insane traffic in and out Boston.

Thankfully, our dentist is located in the next town, and visits here are much easier on us. I do not need to pack lunch and a snack for Nicholas. I do not need to bring toys and books and backpacks to help entertain him while we wait in the waiting room. Yes, visits to the dentist are much easier on us, that was until yesterday.

Children diagnosed with PWS tend to have thick saliva. Low muscle tone can cause them to breathe with their mouths open. These issues increase the potential for children with PWS to get cavities, and lots of them. Unfortunately, behavior issues make it very difficult for my son, Nick to sit calmly and quietly in the dentist chair. The noise, the sights, the sounds, the disruption to his schedule are all very difficult inputs for Nicholas to process.

Our recent visit to the orthodontist also confirms that Nick's teeth are starting to crowd. Since filling cavities can become a nightmare for children diagnosed with PWS, you can imagine what maintaining braces would entail.

Our wonderful, Orthodontist, Dr. Koglin, explained to me that to avoid putting braces on Nick, we would need to pull some of his teeth at the appropriate time. This would enable new teeth coming in to do so without crowding and the need for braces.

Now, for most kids, this procedure would take place in the dentist chair. Not so for Nicholas.

Since Nicholas will need to be put to sleep, this procedure will need to be completed in a hospital setting with a trained anesthesiologist. Breathing issues during sedation are common in children with low muscle tone. Nicholas also has trouble regulating his body temperature, this too will need to be monitored. His potential for seizures, another serious issue to monitor, as is his borderline Von willebrand's disease which makes his blood difficult to clot. An IV needs to be inserted in Nick's arm just in case DDAVP is needed to help his blood to clot. IV's are never easy to perform on Nicholas since his low muscle tone makes his veins roll. His last IV had to be placed in his ankle. Nice, huh?

This will be the 9th procedure Nicholas has endured in only his 8th year of life. Putting Nicholas to sleep is always a little scary for me. Dr. Koglin would like to perform this procedure in the summer. Great.

While our wonderful dentist, Dr. Lindi, removes his teeth during this procedure, she will also take x-rays, clean his teeth, seal them with a fluoride coating and fill any cavities. This hopefully, avoids having to come back to the hospital too soon.

To make matters worse, coordinating this procedure through our insurance companies is yet another difficult obstacle course filled with lethal land mines. Nick's last procedure had to be canceled the first time since one of our insurance companies did not feel it was "medically necessary". (Even though his physician, his dentist and his orthodontist all agreed!)

It is hard sometimes not to get angry since a simple dentist visit for Nicholas ends up being a complex surgery in a hospital setting after months of fighting with insurance companies who are indifferent.

I suppose most Mom's would think I'm crazy when I say I just want to take my son to the dentist!

Monday, November 8, 2010

The Hero Sandwich Generation

I have been told that I am a part of the Sandwich Generation, individuals caring for small children who also care for aging parents.

My Mom, Evelyn
My Mom, Evelyn was diagnosed with dementia shortly after my son, Weston was born. Dementia is a degenerative illness much like Alzheimers disease. Individuals suffering from dementia experience memory loss, changes in mood and personality, speech and motor difficulties as well as difficulties performing day-to-day functions. It is a devastating and life threatening illness.

My Mom was known for her quick wit, her sparkling exuberance and her steadfast intelligence.  She was the one folks would come to visit when they needed sound advice. It has been so difficult watching my mother slowly succumb to this disease. Our family is struggling to coordinate her care and maintain healthy relationships with one another. It has not been easy.

For my Mom's safety, we finally had to place her into an assisted living facility that specializes in caring for individuals diagnosed with dementia. It has been like a Godsend for my mother and our family. But still, I feel guilty. I feel guilty that I can not care for my mother the way that I would like to care for her.

I have come to realize that dementia sufferers experience many of the same issues faced by children diagnosed with ADHD and Prader Willi Syndrome.

Like Weston, my Mom is easily agitated and requires assistance handling transitions. She is impulsive and bores easily. She is overwhelmed and "shuts down" when situations are noisy or chaotic.

My Mom is also a lot like my son, Nicholas. She perseverates over and over about certain subjects. She has poor emotional control, cognitive and behavioral challenges and is obsessive/compulsive.

And much like the care I provide to my children, my mother's care requires many trips to physician's offices, psychiatrists and specialists.

I can't help but feel like I have been in "special care" training for the last 11 years of my life.

Raising two children diagnosed with special needs and an elderly mother diagnosed with dementia, I do not feel like a part of the Sandwich Generation.

I feel like a part of the Hero Sandwich Generation!

What New Yorkers call "The Hero Sandwich"

The Mom Sandwich