Aside

A Summer of Blessings

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I was reminiscing over what the summer brought us and wanted to share some of our blessings. Home school is back in session and his request for the summer was just minimal Doctor visits and relaxation.  In writing about our summer, I am reminded of the song “Count Your Blessings” 

“When upon life’s billows you are tempest tossed,
When you are discouraged, thinking all is lost,
Count your many blessings, name them one by one,
And it will surprise you what the Lord hath done.”

  • Griffin has had a wonderful close friend spend the night quite a few times and it has been a great distraction.  I love hearing their laughter!  It’s difficult for us to leave the house so we really have enjoyed the company.
  • He was able to spend some time on his Xbox and chat with friends while they played games.  Most of the time, the noise and the pain keeps him off so this is always a blessing when he has days well enough to play.
  • He was invited to a birthday party at Pizza Hut where they migrated to Palace Point for games a movie and bowling.  He wasn’t able to bowl but he enjoyed the time with friends.
  • We spent an afternoon at the zoo with his cousins and aunts and we learned the value of pacing ourselves.
  • He enjoyed the extra time this summer, playing with Sparky, Bleu and Pickles.
  • Griffin loves to eat so he picked out his favorite foods when we went to buy groceries. We’ve been focusing on healthier eating habits and even tried juicing this summer!
  • He reached another peak in his growth this summer and has reached 6’5″ with a size 16 foot!

“Count your blessings, name them one by one,
Count your blessings, see what God hath done!
Count your blessings, name them one by one,
And it will surprise you what the Lord hath done.”

  • We had visits and calls from some wonderful church, family and friends over the summer. My Pastor and our church body  have been there for me when I needed strength; some kept my mind active with websites and research;  long-time friends visited the church this summer (even though we couldn’t attend); Griffin and I received some wonderful cards in the mail; their love offerings helped us keep up with some medical expenses; and, I even received wonderful information on nutrition!  Thanks, Concord United Methodist!
  • It rained so much this summer that we actually grew bananas on our banana tree and I turned the “koi pond attempt” into a nice arrangement for the babies that keep sprouting up. It’s still a work in progress.
  • Keith visited for the day and we had a cook out and Griffin actually rode on the boat, for the first and only time in two years, taking his pets with him to play on the islands and Keith fixed his laptop.
  • His aunts and grandpa visited and we enjoyed a nice day together with their homemade fried chicken, corn on the cob with Griffin’s favorite beans and crescent rolls.

“Are you ever burdened with a load of care?
Does the cross seem heavy you are called to bear?
Count your many blessings, every doubt will fly,
And you will keep singing as the days go by.”

  • Great friends have kept our lawn trimmed this summer.
  • Emily brought over her home-made potato salad!
  • Friends brought us dishes of wonderful meals.
  • A neighbor offered a spare wheelchair should we need it.  Griffin is still restricted from too much weight-bearing for long amounts of time.
  • His cousins spent Fourth of July weekend with us.   They got the boat running and fixed up several things around the house that have been neglected over the past couple of years.  Their visit was a huge blessing and we loved having them over!
  • I am thankful for  each and every one of you who have kept us in your prayers and kept in touch.  That means the world to us!
  • We’ve had many nights this summer of no sleep. The pain will finally induce enough rest to maintain.  These nights and days have given us time to connect and to talk long and hard about how God doesn’t give us more than we can handle and how important our faith and hope are for recovery. His CRPS is in full bloom and it feels like lava running through every vein in his body.

“When you look at others with their lands and gold,
Think that Christ has promised you His wealth untold;
Count your many blessings. Wealth can never buy
Your reward in heaven, nor your home on high.”

  • We eliminated a bunch of items during our yard sale, raised some funds for medical expenses and were able to donate many items.  We are focusing on eliminating the unnecessary clutter and direct our attention on the important things.
  • We successfully eliminated two bills this summer, cable and the home phone.
  • Griffin completed two YouTube videos for a non-profit organization for kids! Why Did This Happen To Me And How I Got RSD and There Is A Bully In The Jungle and has several more in the works thanks to KDT! Plus, he earned credit for community service summer assignment and many thanks of gratitude from the author, who contacted him through one of his on-line videos for CRPS Awareness, Pamela J. Tomlinson.
  • We’ve met some wonderful new people in the process of promoting awareness for CRPS and we have had several wonderful friends that have been helping keep us updated on new trials and treatments.
  • We received medical contributions from several more friends and acquaintances putting us up to 64% of our goal!
  • Griffin’s story “A Son Like Griffin”  was featured in the Sussy Project.  We both received some encouraging emails from the promoters of this Project and they are awesome!  They even sent Griffin an award of Microsoft Points to put an extra  smile on his face.
  • Thanks for Patrick Walters, at Triangle Variety Radio, Griffin’s  story was featured on Rogers Weekly news
  • His website was featured in Definitive Library for Reflexive Sympathetic Dystrophy (CRPS) Chronic Pain and Similar Conditions, to help promote CRPS Awareness for Kids.
  • He entered a summer scholarship video essay on “The One Thing That Changed My Life“.  He didn’t win but the distraction of putting together the video was a good for him  and he is grateful for  the wonderful votes he received.

“So, amid the conflict whether great or small,
Do not be disheartened, God is over all;
Count your many blessings, angels will attend,
Help and comfort give you to your journey’s end.”

  • Griffin may qualify for a new stem cell injection to rebuild the cartilage in his knee. We’re waiting on more tests he will have to do in order to determine the extent of the knee damage.  This procedure is less invasive than knee replacement and more suitable for his age and disease. Here is another video explaining the process. We are so thankful for this new option and for God giving us the patience to wait for it.  The X-Ray results showed left leg bone density reduction and he needs to strengthen his hip muscles.
  • We both have a multi-disciplinary team set up to help us conquer our pain.  This involves the Primary Care Doctors, Rheumatologist, Orthopedic Surgeon, Psychiatrist, Counselor,  Chiropractor, Water Therapist,  Podiatrist, a Urologist, and, Griffin’s Pain Specialist  is working with him on the coping skills and coordinating his care through The Children’s Hospital at Duke for occupational therapy and physical therapy and overcoming sensory issues. There is research underway to examining “the mitochondrial DNA link on the maternal side of families” which links Fibromyalgia and CRPS. The two diseases we suffer from.
  • TCAPP (The Coalition for Pediatric Pain) organized the first “Think Tank” weekend involving many Doctors (including one of Griffin’s Doctors from Boston Children’s Hospital) to brainstorm ideas on CRPS treatment and cures. One of the Founders has also provided us with several encouraging emails to which I am very grateful.
  • Griffin’s understanding more about why the other kids with CRPS are choosing the Ketamine 5-10 day Infusion Therapy and has had two friends already try this out. (This has just recently been offered to teens with CRPS)
  • Another blessing has been the positive results patients  have been receiving through Calmare Scrambler Therapy.  There are  a few Research Centers that specialize in this option for pain control. There is a Doctor in New Jersey and specializes in CRPS patient treatment through this therapy.

This summer has been spent praying for the right decisions and the “moments of normalcy” in our days are our blessings.  We are so thankful for each of them because they distract our minds from pain. I’ve spent a lot of the summer putting Griffin’s curriculum together.  It’s a blessing to be able to home school and this year Griffin is taking Chemistry, Geometry, World History, World Literature, Religion and Fine Arts.  Pray for a successful and enjoyable new school year!

The biggest lesson we learned this summer is  that you can meet many doctors, professionals and people and the one’s that make you feel good are the ones you need to treasure.  It is very hard to live with chronic pain and any toxic communication can set your recovery back by months.  Please pray that we “learn the art of being wise and the art of knowing what to overlook”.  Please pray for our multi-disciplinary team and that we can maintain the physical stamina required to keep up with the goals, that our vehicle continues to provide reliable transportation, for the financial ability to budget for the gas and co-pays, for patience and motivation, and, for safety in our travels.

Dear Lord, thank you for a wonderful summer filled with many blessings and memories.  We don’t always want to spend our money on treatments and we pray for a cure very soon.  I am always so concerned about details and so focused on finding the underlying causes to things.  I don’t like to move forward without answers.   I know I analyze everything too much.  Please help me with this.   I know that you have a purpose for everything.  Please let me understand and trust in you more. Please let me learn to listen to you and to understand the reason behind this dreadful disease.  I don’t want my son to go without restful sleep, I don’t want him to be in pain 24/7, I don’t want him to doubt his purpose in life.  I want him to have quality in life during his teenage years and throughout his adulthood.  Lord, I know that you are here for us and that everyday you send us a new blessing.   Please continue to stay with us because we cannot do this without you!  I love you Lord. I know I don’t always have the same plans as you, but, I trust in you and need you. Amen. 

Blessings,

Sandy

Griffin Needs Your Vote!

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Griffin has entered a scholarship essay contest and needs your vote! 

Here is the link to vote on his video essay topic “The One Thing That Changed My Life”:

http://scholarships.collegeplus.org/essays/1152-the-one-thing-that-changed-my-life

The Grand Prize is a FULL RIDE SCHOLARSHIP!  Please vote for his wonderful video and share this with everyone you know.  He needs your vote.  He has been through so much over the last two years and education has always been important to him.  Medical expenses have eaten through the college savings and this is a wonderful opportunity for him. Information about the prizes are below.  This was a hard video for him to put together and has a lot of emotion tied up in it.  Please give him your support.

The Grand Prize is a full-ride scholarship to go through the CollegePlus Bachelor’s Degree Program and graduate from one of our Premier Partner Colleges ($25,000 value).  Every person who takes the time to write or record an essay will earn a $350 scholarship toward CP tuition.  The best video and best written essays not winning the Grand Prize will receive a scholarship covering their first year in the CollegePlus Bachelor’s Degree Program – two Individual Scholarships, each a $3,500 Value! An Audience Choice Award of an iPad (a $550 value) will be given to the creator of both the video and the written essay that receives the highest number of votes in the voting period.

CollegePlus is a Christian company that creates customized dual credit and Bachelor’s degree programs for students, based on their personality, learning style, and life purpose, then integrates personal coaching and mentoring to empower students to reach their educational and life goals, without the time constraints and debt burden of traditional college

Here is the link to vote for Griffin’s video essay:

http://scholarships.collegeplus.org/essays/1152-the-one-thing-that-changed-my-life

The voting process is so simple.  Thank you for your support!

The Sussy Project

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A Son like Griffin

August 13, 2013 in Uncategorized by Meggie | No comments

When I first read Griffin’s story, I thought about my unborn son (he’ll be arriving in a few short weeks). If my son turns out like Griffin, I safely can say I’ve done something right. He has amazing courage, an encouraging spirit, and a gigantic heart. But don’t just take my word for it – here is what Griffin’s mom (Sandy) told us about Griffin:

 “Griffin has always been intelligent as a child. He earned his Arrow of Light in Cub Scouts. I was the Cub Master and every week he would help me prepare the Monday lessons for the entire pack. He won an Art Award which was displayed at the local Kirby Theater Gallery & earned The Young Eagle Award for co-piloting a sports plane. He is a member of The Young Eagles & wants to become a sports plane pilot (although the medical profession is still researching the effects of air pressure potentially causing the spreading of CRPS). He is an avid animal lover & wishes to be a Geologist or Archaeologist when he completes college. He used to meet with his friends every Saturday and was the Website Designer for their cartoon creations. He was usually one of the top fundraiser participants for his school and enjoyed helping me serve food at the soup kitchen on his days off.

He was born 2 months premature. However, even then he was the largest baby in the neonatal clinic. He was hardly ever sick growing up, never complained even when he broke his arm at Disney and his ankle at his father’s house. He initially stopped walking at age 4 when he broke his ankle and although the fracture appeared to have healed, it took about 6 months on a walker to get him back walking without support. No one knows what causes CRPS. It may be hereditary, could be caused by stress in the person’s life at the time of the injury or it could be a result of immobilization after a surgery.

grif
Before his CRPS injury, most days were spent carefree, playing & walking the dogs & he loved to travel! On his 10th birthday, he got a silver mustang convertible & enjoyed riding home from school with the top down or, taking his dogs for a ride (while mom drove). When in Texas, during our western adventure trip, instead of buying souvenirs, like most kids, he bought 5 acres of land to explore. He kept a daily journal & this was an invaluable resource to return to for medical purposes. From his daily journal he wrote, “August 23, 2011 My goals for the year are to get good grades, try to finish homework & classwork the best that I can. Eat healthier, play with my dogs more, do my chores more often, try to charge my computer more often, watch less TV, play less video games, get outside more, exercise more, try not to be stressed all the time like last year & the 2 years before, clean my room more, start walking my dogs, get more sleep, pet my dogs more, visit my cousins more, go swimming more, ride on the boat more, hang out with my friends more at Youth For Christ, spend more time with my family, try to get my dog Benson to stop biting & barking at Sparky, vacuum my room, wash the car, try to focus more, lift weights, get to school earlier, try to stay after school for tutoring, volunteer more to help the teachers, my school, the environment & my community, be more involved in my church at Concord United Methodist where most of my favorite teachers go, make home-made apple juice & orange juice, practice on my trumpet more.​”

He started the website www.crpskidz.com – which is dedicated to helping kids with CRPS by a commitment to share his adventure with CRPS. “I hope to make others more aware of the pain associated with this disease and to be a source for other kids.” and his WordPress blog is also available to keep kids informed.  His summer project is converting non-profit educational material for kids into You Tube format and you can find his videos under “projects” on his blog at https://crpskidz.wordpress.com/

griffin

Griffin has a huge heart and is very non-materialistic.  I am a single mom and he never complains unless it is something he feels he can’t overcome by himself.  He participated in Boston Children’s PPRC clinic which got him back on his feet again and out of his wheelchair.  However, is standing is limited due to POTS, Patella Femoral Syndrome, bone bruising and meniscus damage.  He is hoping for a cure so that he can have cadaver knee surgery with cartilage built-in.  CRPS is affecting his internal organs and he suffers from hiatal hernia, hypersensitivity to everything, ingrown toenails, skin mottling, bursting veins, sleep paralysis, and uncontrollable itching. Since his disease, he has grown from 5’9″ to 6’5″ and a size 15-1/2″ shoe!  We’re having a tough time just keeping him dressed. Griffin’s CRPS Awareness video is located at http://tinyurl.com/crpsyoutube and his Facebook link is www.facebook.com/CRPSKidz.”

When I emailed Sandy to let her know that we were going to sussy Griffin, she was ecstatic. And Griffin’s sincere email melted my heart.

griffin2

Here is what he said:

“When I got CRPS, I was always the kid at the PPRC in Boston’s Children’s Hospital that slept too much but now I am like the other kids and don’t sleep at night much.  That’s when I hurt the most.  The other bad part is having no cartilage in my knee and Patella Femoral Syndrome.  I’ve had the spine shots and therapies to walk again even without the knee fixed.  I have POTS so my heart races too fast when I do my exercises.  I know God doesn’t give me more than I can handle so I must be pretty tough.

The best thing they taught us in Boston is to keep your mind distracted and my best distraction is playing XBox and chatting with my friends.  I don’t like to leave the house and I home school because I got bumped too much in the hallways at school and XBox lets me be able to play and talk to my friends.

I was surprised when I opened your email!  My friend had just come over to spend the night and I had a smile on my face and I know you didn’t have to do this.  You are amazing to do what you do to make strangers happy.  The Microsoft Gift Points was a cool gift and when I can, I will be sure to pay it forward and tell everyone about the Sussy Project.”

I also followed up with Sandy to let her know about her son’s gift and told her that I hope my son has the heart and courage like Griffin. Her response brought tears to my eyes:

Best of luck to you and thank you so much for making my son smile.  In the past, he used to save all of his allowance, would never treat himself – just in case someone needed help.  We weren’t expecting that it would be him that would need the help.  But, he has a big heart and I love him tremendously.  We’ve learned that we only need the basics in life and that God provides for us daily.  We have each other and that is our blessing. Thanks for all you do!” 

As you go about your day, I want to leave you with this quote to inspire your actions and thoughts today (and everyday):

Be kinder than necessary because everyone you meet is fighting some kind of battle.” – J.M. Barrie

To understand more about CRPS, please check out Griffin’s site.

———————————-

Do you want to surprise someone with kindness? Take a few minutes and tell us their story today!

Nominating Griffin

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He deserves a smile – I am nominating my son, age 16 for the sussyproject.com

Griffin has always been intelligent as a child. He earned his Arrow of Light in Cub Scouts. I was the Cub Master and every week he would help me prepare the Monday lessons for the entire pack. He won an Art Award which was displayed at the local Kirby Theater Gallery & earned The Young Eagle Award for co-piloting a sports plane. He is a member of The Young Eagles & wants to become a sports plane pilot (although the medical profession is still researching the effects of air pressure potentially causing the spreading of CRPS). He is an avid animal lover & wishes to be a Geologist or Archaeologist when he completes college. He used to meet with his friends every Saturday and was the Website Designer for their cartoon creations. He was usually one of the top fundraiser participants for his school and enjoyed helping me serve food at the soup kitchen on his days off.

He was born 2 months premature. However, even then he was the largest baby in the neonatal clinic. He was hardly ever sick growing up, never complained even when he broke his arm at Disney and his ankle at his father’s house. He initially stopped walking at age 4 when he broke his ankle and although the fracture appeared to have healed, it took about 6 months on a walker to get him back walking without support. No one knows what causes CRPS. It may be hereditary, could be caused by stress in the person’s life at the time of the injury or it could be a result of immobilization after a surgery.

Before his CRPS injury, most days were spent carefree, playing & walking the dogs & he loved to travel! On his 10th birthday, he got a silver mustang convertible & enjoyed riding home from school with the top down or, taking his dogs for a ride (while mom drove). When in Texas, during our western adventure trip, instead of buying souvenirs, like most kids, he bought 5 acres of land to explore. He kept a daily journal & this was an invaluable resource to return to for medical purposes. From his daily journal he wrote, “August 23, 2011 My goals for the year are to get good grades, try to finish homework & classwork the best that I can. Eat healthier, play with my dogs more, do my chores more often, try to charge my computer more often, watch less TV, play less video games, get outside more, exercise more, try not to be stressed all the time like last year & the 2 years before, clean my room more, start walking my dogs, get more sleep, pet my dogs more, visit my cousins more, go swimming more, ride on the boat more, hang out with my friends more at Youth For Christ, spend more time with my family, try to get my dog Benson to stop biting & barking at Sparky, vacuum my room, wash the car, try to focus more, lift weights, get to school earlier, try to stay after school for tutoring, volunteer more to help the teachers, my school, the environment & my community, be more involved in my church at Concord United Methodist where most of my favorite teachers go, make home-made apple juice & orange juice, practice on my trumpet more.​”

He started the website www.crpskidz.com – which is dedicated to helping kids with CRPS by a commitment to share his adventure with CRPS. “I hope to make others more aware of the pain associated with this disease and to be a source for other kids.” and his WordPress blog is also available to keep kids informed.  His summer project is converting non-profit educational material for kids into You Tube format and you can find his videos under “projects” on his blog at https://crpskidz.wordpress.com/

Griffin has a huge heart and is very non-materialistic.  I am a single mom and he never complains unless it is something he feels he can’t overcome by himself.  He participated in Boston Children’s PPRC clinic which got him back on his feet again and out of his wheelchair.  However, is standing is limited due to POTS, Patella Femoral Syndrome, bone bruising and meniscus damage.  He is hoping for a cure so that he can have cadaver knee surgery with cartilage built in.  CRPS is affecting his internal organs and he suffers from hiatal hernia, hypersensitivity to everything, ingrown toenails, skin mottling, bursting veins, sleep paralysis, and uncontrollable itching. Since his disease, he has grown from 5’9″ to 6’5″ and a size 15-1/2″ shoe!  We’re having a tough time just keeping him dressed. Griffin’s CRPS Awareness video is located at http://tinyurl.com/crpsyoutube and his Facebook link is www.facebook.com/CRPSKidz

He is a great son and is missing out on so many teenager memories.  Please consider him for a nomination.  Anything to pick up his spirits!

*CRPS can follow an injury as minor as a sprain, a tick or dog bite, giving blood, immobilization after a surgery, even after a heart attack or stroke and the pain is not in proportion with the type of injury that has incurred. This disease has been around since the civil war, but we still have no cure. Some veterans describe the pain as intense and hot – long after the wounds have healed.

Blessings,

Sandy Boone

www.facebook.com/CRPSKidz

www.crpskidz.com

www.gofundme.com/crpskidz

http://tinyurl.com/crpsyoutube

www.trianglevarietyradio.com

“I can do all things through Christ who strengthens me.” Philippians 4:13

CRPSKidz is dedicated to helping kids with CRPS by a commitment to share my adventure with CRPS. I hope to make others more aware of the pain associated with this disease and to be a source for other kids.

CRPS Kidz

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Life doesn’t prepare you for CRPS. One day I was 14 carefree, enjoying a simple game of dodge ball. Today I am fighting to walk, trying to restore my happiness and to be pain-free. Follow me on my adventure with CRPS. I will be updating my journal, providing resource links, defining CRPS, linking to CRPS events, displaying items from my store to raise funds for medical treatment and research, sharing my mission and vision statement, news articles, and soliciting donations.

*CRPS can follow an injury as minor as a sprain, a tick or dog bite, giving blood, immobilization after a surgery, even after a heart attack or stroke and the pain is not in proportion with the type of injury that has incurred. This disease has been around since the civil war, but we still have no cure. Some veterans describe the pain as intense and hot – long after the wounds have healed.

www.facebook.com/CRPSKidz

www.crpskidz.com

www.gofundme.com/crpskidz

http://tinyurl.com/crpsyoutube

www.trianglevarietyradio.com

“I can do all things through Christ who strengthens me.” Philippians 4:13

CRPSKidz is dedicated to helping kids with CRPS by a commitment to share my adventure with CRPS. I hope to make others more aware of the pain associated with this disease and to be a source for other kids.

Pediatric Echo Transthoracic Report

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Initially, Griffin was seen for chest pain and his standing heart rate would reach 188 within seconds of therapy. October 25, 2012-October 26, 2012, he was given a Holter Monitor to wear.  November 12, 2012 he had an ultrasound performed at the Duke Children’s Heart Program in the ECHO Lab.  The Pediatric Echo Transthoracic Report showed the BP 109/72 and his Dr was Michael Camitta who, is unfamiliar with CRPS.

The report showed no cardiac disease; poor subcostal echocardio-graphic windows; Levocardia-positioning veins – normal systemic connections. At least two pulmonary veins seen connecting to left atrium; Normal Pulmonary Vein Velocity; Atria – normal right/left atrial size; Cannot rule out small defects; Patent Foramen Ovale; Trivial Pulmonary Valve Insufficiency

Problems that were noted:

Trace Tricuspid Valve Insufficiency-a disorder in which the heart’s tricuspid valve does not close properly, causing blood to flow backward (leak) into the right upper heart chamber (atrium) when the right lower heart chamber (ventricle) contracts. The tricuspid valve separates the right lower heart chamber (the right ventricle) from the right upper heart chamber (right atrium).  The most common cause of tricuspid regurgitation is enlargement of the right ventricle, which pumps blood to the lungs, where it picks up oxygen. This enlargement may be a complication of any disorder that causes extra strain on the right ventricle.  An ECG or echocardiogram may show enlargement of the right side of the heart. Doppler echocardiography or right-sided cardiac catheterization may be used to measure blood pressure inside the heart and lungs.  Other tests, such as CT scan or MRI of the chest (heart), may reveal enlargement of the right side of the heart and other changes.  Swelling may be managed with medications (diuretics) that help remove fluids from the body.  Treating any conditions, especially high blood pressure in the lungs and swelling of the right lower heart chamber, may correct this disorder. Surgical valve repair or replacement usually provides a cure. However, persons with severe tricuspid regurgitation that cannot be corrected may have a poor prognosis, either from this condition or the one that caused it.  Possible Complications: Cirrhosis; Endocarditis;Weight loss; Worsening of heart failure; http://www.nlm.nih.gov/medlineplus/ency/article/000169.htm

Trace Mitral Valve insufficiency a disorder of the heart in which the mitral valve does not close properly when the heart pumps out blood. It is the abnormal leaking of blood from the left ventricle, through the mitral valve, and into the left atrium, when the left ventricle contracts, i.e. there is regurgitation of blood back into the left atrium. MR is the most common form of valvular heart disease.   The symptoms associated with mitral regurgitation are dependent on which phase of the disease process the individual is in. Individuals with acute mitral regurgitation will have the signs and symptoms of decompensated congestive heart failure (i.e. shortness of breath, pulmonary edema, orthopnea, and paroxysmal nocturnal dyspnea[3]), as well as symptoms suggestive of a low cardiac output state (i.e. decreased exercise tolerance). Palpitations are also common. Cardiovascular collapse with shock (cardiogenic shock) may be seen in individuals with acute mitral regurgitation due to papillary muscle rupture or rupture of a chorda tendinea.  Commonly, atrial fibrillation is found.  In acute cases, the murmur and tachycardia may be only distinctive signs.  Patients with mitral valve prolapse often have a mid-to-late systolic click and a late systolic murmur.   Secondary mitral regurgitation is due to the dilatation of the left ventricle that causes stretching of the mitral valve annulus and displacement of the papillary muscles. This dilatation of the left ventricle can be due to any cause of dilated cardiomyopathy including aortic insufficiency, nonischemic dilated cardiomyopathy, and Noncompaction Cardiomyopathy. Because the papillary muscles, chordae, and valve leaflets are usually normal in such conditions, it is also called functional mitral regurgitation.  Acute mitral regurgitation is most often caused by endocarditis, mainly S. aureus. Rupture or dysfunction of the papillary muscle are also common causes in acute cases, dysfunction which can include mitral valve prolapse. Because of the inability in getting accurate images of the left atrium and the pulmonary veins on the transthoracic echocardiogram, a transesophageal echocardiogram may be necessary to determine the severity of the mitral regurgitation in some cases.  The treatment of mitral regurgitation depends on the acuteness of the disease and whether there are associated signs of hemodynamic compromise. In acute mitral regurgitation secondary to a mechanical defect in the heart the treatment of choice is mitral valve surgery. Surgery is curative of mitral valve regurgitation. There are two surgical options for the treatment of mitral regurgitation: mitral valve replacement and mitral valve repair. Mitral valve repair is preferred to mitral valve replacement where a repair is feasible as bioprosthetic replacement valves have a limited lifespan of 10 to 15 years, whereas synthetic replacement valves require ongoing use of blood thinners to reduce the risk of stroke.  Indications for surgery for chronic mitral regurgitation include signs of left ventricular dysfunction with ejection fraction less than 60%, severe pulmonary hypertension with pulmonary artery systolic pressure greater than 50mmHg at rest or 60mmHg during activity, and new onset atrial fibrillation.  http://en.wikipedia.org/wiki/Mitral_regurgitation

The next step is to do a TILT Study for the POTS Symptoms.  However, we are currently having spinal adjustments performed twice a week and this seems to be having a positive impact on his heart rate.  We will continue regular check ups on his heart and closely monitor the pulse especially during his therapies.

*CRPS can follow an injury as minor as a sprain, a tick or dog bite, giving blood, immobilization after a surgery, even after a heart attack or stroke and the pain is not in proportion with the type of injury that has incurred. This disease has been around since the civil war, but we still have no cure. Some veterans describe the pain as intense and hot – long after the wounds have healed.

www.facebook.com/CRPSKidz

www.crpskidz.com

www.gofundme.com/crpskidz

http://tinyurl.com/crpsyoutube

www.trianglevarietyradio.com

“I can do all things through Christ who strengthens me.” Philippians 4:13

CRPSKidz is dedicated to helping kids with CRPS by a commitment to share my adventure with CRPS. I hope to make others more aware of the pain associated with this disease and to be a source for other kids.

fMRI Study

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Griffin has participated in the fMRI study twice.  We hope others that qualify will become involved so that we can all better understand the role of CRPS in the brain. The study is non-invasive and provided a brain photo CD for Griffin to keep. It also involves sensory testing with photos of faces expressing different feelings to see the brains response to emotions.

From eMax Health:

The first-ever functional brain imaging study of chronic pain conducted in children, done by researchers at Harvard-affiliated McLean Hospital and Children’s Hospital Boston, has shed new light on a mysterious condition known as complex regional pain syndrome (CRPS) and offers hope for a better understanding of the disorder in both children and adults. The study, supported by the Mayday Fund of New York, is the result of a joint effort between researchers at Children’s who treated the patients in the study and the P.A.I.N. (Pain & Analgesia Imaging and Neuroscience) group at McLean, who conducted the imaging tests.

“Studying pain in children offers us insights into how the brain may cure itself because the young brain is so adaptable relative to the adult brain,” says David Borsook, MD, PhD, director of the P.A.I.N. group at McLean, and senior author of the study published in the current issue of Brain (abstract). “This may offer very important insights into the development of new therapeutic approaches to chronic pain-a condition that more than 50 million Americans suffer from with relatively little in terms of highly effective therapies.”

CPRS is a disorder of the peripheral nervous system characterized by severe pain, hypersensitivity to stimuli, poor circulation, abnormal sweating, muscle atrophy, joint problems, movement disorders and cognitive changes, among other symptoms.

http://www.emaxhealth.com/82/23641.html

About the Study

QST is a safe and accurate method of assessing an individual’s sensitivity to touch and cold stimulation on the skin. After initial sensory testing, the participant will receive touch and cold stimulation on the skin during functional MRI. Functional MRI is a safe and non-invasive way of imaging the brain’s structure and activation over brief periods of time. In addition to providing a picture of the brain, it shows how the brain responds to different levels of stimulation, and will allow comparison of brain activity between the pain and non-pain states. This study will promote a better understanding of the brain’s role in CRPS I and II.

For more information about this study, please contact:
Dr. Alyssa LeBel, Neurologist, Children’s Hospital Boston
or Jennifer Jaskiewicz, Study Coordinator, Children’s Hospital Boston
Pain Treatment Service
333 Longwood Ave, 5th Floor
Boston, MA 02115
Tel: (617) 355 8973
Email: jennifer.jaskiewicz@childrens.harvard.edu

 
*CRPS can follow an injury as minor as a sprain, a tick or dog bite, giving blood, immobilization after a surgery, even after a heart attack or stroke and the pain is not in proportion with the type of injury that has incurred. This disease has been around since the civil war, but we still have no cure. Some veterans describe the pain as intense and hot – long after the wounds have healed.

www.facebook.com/CRPSKidz

www.crpskidz.com

www.gofundme.com/crpskidz

http://tinyurl.com/crpsyoutube

www.trianglevarietyradio.com

“I can do all things through Christ who strengthens me.” Philippians 4:13

CRPSKidz is dedicated to helping kids with CRPS by a commitment to share my adventure with CRPS. I hope to make others more aware of the pain associated with this disease and to be a source for other kids.

Neuropsychological Screening For Mild Cognitive Impairment

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Griffin began struggling with his studies at school and was becoming lethargic.  His Primary Care Doctor suggested a Memory Test.  The test was performed on November 18, 2011. We were advised that the results were normal and with all the appointments going on and trying to keep up with school by the time I asked for a copy of the report, it had been “archived” due to a new computer system.

Neuropsychological tests are designed to examine a variety of cognitive abilities, including speed of information processing, attention, memory, language, and executive functions, which are necessary for goal-directed behavior. By testing a range of cognitive abilities and examining patterns of performance in different cognitive areas, Neuropsychologists can make inferences about underlying brain function. Neuropsychological testing is an important component of the assessment and treatment of traumatic brain injury, dementia, neurological conditions, and psychiatric disorders. Neuropsychological testing is also an important tool for examining the effects of toxic substances and medical conditions on brain functioning.  http://www.minddisorders.com/Kau-Nu/Neuropsychological-testing.html#ixzz2b1vGjGUw

Neuropsychological tests can also be used as screening tests to see if more extensive diagnostic evaluation is appropriate.  Most tests include tables of these normal scores, often divided into groups based on demographic variables like age and education that appear to affect cognitive functioning. This allows individuals to be compared to appropriate peers. http://www.minddisorders.com/Kau-Nu/Neuropsychological-testing.html#ixzz2b1vjC2kk

Over a month later, I was still unable to retrieve his file and when I insisted on receiving it, I was finally provided parts of it along with a huge bill. When I suggested they not charge me since this was urgent and the records should have been released months ago, the receptionist said to wait a moment and returned stating, “The Doctor doesn’t know why your son is sleeping so much, maybe you should have him turn the television off.”  This was my last visit to a Doctor my son had been seeing since he was age 1.

When we arrived at his Neurological appointment two months later, the first thing the Neurologist asked was “What are you doing about his depression from the Neuropsychological Screening?”  We were taken back on this question.  Griffin had become so lethargic by this time and we had tried to take all the necessary precautions and steps up to this point.  We advised the Doctor that we were told the Test was Normal and had not received a copy of it.  He told us the testing procedure used was rather archaic and not age-appropriate and provided us with a copy of the results.

November 18, 2011 Neuropsychological Screening for Mild Cognitive Impairment

Memory = High Functioning

Fluency = High Functioning

Executive Functions = High Functioning

Prediction: If given full Neuropsychological evaluation, likelihood of MCI (Mild Cognitive Impairment) Classification would be <10% Degree of Cognitive Decline

7/10 Depression 70% Close Attention Very Symptomatic score for age since scale is based on much older patients.  Recommendation: Further evaluation of emotional factors.

Typical Procedure after Scoring

The assessment results entail a session that typically lasts from one to two hours in which the doctor goes over the major findings of his formal report in language that the patient and family can understand. He makes recommendations and answers questions about the results and the implications of his findings. He usually gives a copy to the patient and the family.  Doctors take great care and time in these feedback sessions as they want the results to be given with compassion and sensitivity.  brainandinjurytherapy.com

It was determined that depression is currently the leading cause of disability and premature death among those 18–43 years of age. Murray CJ, Lopez AD. Alternative projections of mortality and disability by cause 1990-2020: global burden of disease study. Lancet. 1997;349:1498-1504.

When someone has the common symptoms associated with a disease or condition, they are considered symptomatic.  http://adam.about.net/encyclopedia/Symptomatic.htm

We have found that the hardest part of working with a rare disease is making sure we find educated Doctors and learning that we have to be self-advocates for this disease.  There are so many hurdles that we are constantly trying to overcome and delays in treatment for CRPS can result in a lifetime of problems including irreversible changes to the bone and muscle.

*CRPS can follow an injury as minor as a sprain, a tick or dog bite, giving blood, immobilization after a surgery, even after a heart attack or stroke and the pain is not in proportion with the type of injury that has incurred. This disease has been around since the civil war, but we still have no cure. Some veterans describe the pain as intense and hot – long after the wounds have healed.

www.facebook.com/CRPSKidz

www.crpskidz.com

www.gofundme.com/crpskidz

http://tinyurl.com/crpsyoutube

www.trianglevarietyradio.com

“I can do all things through Christ who strengthens me.” Philippians 4:13

CRPSKidz is dedicated to helping kids with CRPS by a commitment to share my adventure with CRPS. I hope to make others more aware of the pain associated with this disease and to be a source for other kids.

Surgery

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Once the swelling decreased enough, Griffin was finally “ready” for his arthroscopic knee surgery. The surgery involved locating and screwing in a loose bone and revealed all the cartilage had been torn from the kneecap, as well as meniscus damage. [Without the meniscus present, the weight of your body is unevenly applied to the bones in your legs causing excessive forces in specific areas of bone resulting in early arthritis in the joint. Proper meniscus functioning is critical to the health of your knee. The wedged c-shaped profile of the meniscus is what helps maintain the joint stability by keeping the rounded femur surface from sliding off the flat tibial surface. Griffin has shallow grooves, in both knees, which means the knees can shift out-of-place without warning. The meniscus are nourished by small blood vessels, but, also has a large area in the center that has no direct blood supply. This presents a problem when there is an injury to the meniscus because without the essential nutrients supplied by blood vessels, healing cannot take place.] The Doctor stated that he was not prepared for all of the damage he had discovered. He recommended a second surgery involving a cadaver knee replacement with cartilage built-in.

His discharge instructions were to rest, no weight-bearing; use crutches; keep immobilization; keep dressing dry. His surgical follow-up was scheduled for December 28, 2011.

*CRPS can follow an injury as minor as a sprain, a tick or dog bite, giving blood, immobilization after a surgery, even after a heart attack or stroke and the pain is not in proportion with the type of injury that has incurred. This disease has been around since the civil war, but we still have no cure. Some veterans describe the pain as intense and hot – long after the wounds have healed.

www.facebook.com/CRPSKidz

www.crpskidz.com

www.gofundme.com/crpskidz

http://tinyurl.com/crpsyoutube

www.trianglevarietyradio.com

“I can do all things through Christ who strengthens me.” Philippians 4:13

CRPSKidz is dedicated to helping kids with CRPS by a commitment to share my adventure with CRPS. I hope to make others more aware of the pain associated with this disease and to be a source for other kids.

Reward Day at the Movies

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Raising Awareness for CRPS Kidz

Griffin’s Adventure with CRPS
Sandy Boone, Advocacy Journalist

By November, he was missing classes due to the pain and exhaustion. He was having a difficult time remembering how to do his school work and it was taking over 3 hours each day to complete it. We went to his Pediatrician and they performed a memory and diabetes test. He also met back with his Orthopedic Dr. who showed him methods to try to walk again and discussed what would be required to repair the knee once the swelling subsided. His diabetes results came back and he was not diabetic.

Still, problems continued to persist. In Griffin’s Journal entry, he wrote: “November 7, 2011 I went to see my dentist today for my check up. My x-ray showed I had four wisdom teeth coming in. Two were coming in sideways so they will all have to come out. I seem to be having a lot of things going on right now. Russell is coming over tonight to keep me company and keep me cheered up.”

Since the expedition burned up, Griffin was having to ride in the mustang and he wrote “I think I have grown even more since I broke my knee. I was 5’9″ and now it is very hard to get in the mustang, especially with a brace on one leg. We weren’t sure how I was going to get to the IMAX (He was a top fundraiser for his school and this was his reward). The bus would be too bumpy and since I broke my knee, I am in so much pain. Even getting down the gravel road from our house in the morning takes us 20 minutes. When we got to the school, Melissa had a wheelchair rented for me! My mom and I followed the bus in our car to the theater and I was able to ride in the wheelchair up the elevator to Chick Filet. We all got to eat there as part of our reward! The movie was a lot of fun. I was able to park my wheelchair and go up a few steps with my crutches to see the movie. I had to sit by the aisle so my mom sat with me. As soon as the movie was over, we had to leave immediately after because I had to be at Person Hospital for a CAT Scan for my memory loss by 3pm. We got there right on time.” We were having a difficult time driving anywhere! The vibrations from the gravel road was horrendous on Griffin. If there was a pot hole or a bump in the road he would scream in pain. Even the radio was kept off because the vibrations of the music would cause pain.

Would you like to know how CRPS feels? Here is experiment that you can try experience just one of the many symptoms of CRPS: Twist a rubber band around the tip of your index finger. When it starts hurting so bad you want to rip it off, then you need to put in ice water. The entire time your hand is in ice water talk and do not focus on the pain. A fellow CRPS sufferer (Preston) did this at Stanford Hospital as an example of how painful CRPS can be and how hard it is to refocus off the pain.

*CRPS can follow an injury as minor as a sprain, a tick or dog bite, giving blood, immobilization after a surgery, even after a heart attack or stroke and the pain is not in proportion with the type of injury that has incurred. This disease has been around since the civil war, but we still have no cure. Some veterans describe the pain as intense and hot – long after the wounds have healed.

www.facebook.com/CRPSKidz

www.crpskidz.com

www.gofundme.com/crpskidz

http://tinyurl.com/crpsyoutube

www.trianglevarietyradio.com

“I can do all things through Christ who strengthens me.” Philippians 4:13

CRPSKidz is dedicated to helping kids with CRPS by a commitment to share my adventure with CRPS. I hope to make others more aware of the pain associated with this disease and to be a source for other kids.