web analytics

Tips for Feeding Kids with Special Needs

May 24, 2012 in Featured, Insider Insight by Admin Dawn

By The Real Food Moms, Jeannette Bessinger, CHHC and Tracee Yablon-Brenner, RD, CHHC, www.realfoodmoms.com

For your child’s body and brain to function at their best, it is important to provide a diet high in amino acids, the building blocks of protein. But since the body is unable to store excess amino acids it’s smart to split up your child’s protein supply—ideally among the three main meals and two snacks. By feeding meals high in protein throughout the day, you help the neurotransmitters in the brain function better, and stabilize blood glucose levels—preventing hyperglycemia and reactive hypoglycemia—blood sugar “ups” and “downs” that can affect some children’s ability to focus and/or settle down.

One cardinal nutrition rule is to stay away from simple carbohydrates, which break down into glucose and release too quickly into the blood stream. Sugar and high fructose corn syrup are a few examples of simple carbohydrates to avoid. Children are affected differently by sugar, however many studies suggest that sugar negatively affects behavior, impacting aggression, attention, hyperactivity, mood and proper mental function. It is best to replace sugary drinks and snacks with healthy high protein snacks like veggies with hummus or nut or sunflower butter; smoothies with whey or rice protein or nut butter; nuts, seeds, sliced hard boiled eggs, fresh fruit with nut or sunflower butter, yogurt with granola or with nuts and seeds and a dash of honey. When serving foods with added sugar, it’s best to keep it below 15 grams per 100 grams. Cereals should have 3-5 grams of sugar per serving, max, and it’s best to include protein with breakfast, e.g., hardboiled eggs or yogurt with nuts and seeds and a dash of honey. Incidentally, organic honey has many beneficial nutrients—in addition to being a taste treat!

Another essential is to remove synthetic food additives from your child’s diet. For a food additive to be allowed in the diet, it must be certified as “generally recognized as safe” (GRAS), which means it will not have a significant negative effect on health. Unfortunately we don’t know the long-term effects of ingesting chemicals on our nervous, immune, respiratory and endocrine systems. There are 24 synthetic food additives, and we are going to address the four major categories: artificial colors, artificial flavors, artificial preservatives, and artificial sweeteners.

Artificial colors have been embroiled in controversy for some time. A November 2007 study published in The Lancet stated that artificial colors in children’s diets contributed to hyperactive behavior. The UK’s Food Safety Agency released this statement on July 20, 2010: “An EU-wide health warning must now be put on any food or drink that still contains the colours that are thought to cause hyperactivity in some children. This is following the Southampton Study, commissioned by the Agency, which suggested a possible link between consumption of six food colours and hyperactivity in children. The colours are Tartrazine (E102), Quinoline Yellow (E104), Sunset Yellow (E110), Carmoisine (E122), Ponceau 4R (E124) and Allura Red (E129).” There had been a voluntary ban on food coloring in foods in the UK. In the United States, Blue No.1, Blue No. 2, Green No.3, Red No. 40, Red No. 3, Yellow No. 5 and Yellow No. 6 are still permitted in our foods and medicines. Some of these chemicals trigger histamine release and create allergic reactions like hives (uticaria). In the September 2010 issue of the American Journal of Psychiatry, Stevenson, et al., found strong evidence that histamine release affects hyperactivity levels in animal models and also influences frontal cortex dopamine release. In this study, there was improved behavior when artificial color was removed from the diet. The research underscores the importance of avoiding food and medicine with artificial colors. Moreover, most artificial colors are made of a mixture of coal tar. The International Agency for Research on Cancer says that products with 5% crude coal tar are considered a Group 1 carcinogen. How’s that for a reason to remove artificial color from your child’s diet?

Artificial flavors are also a concern, especially (MSG) monosodium glutamate, an amino acid from glutamic acid. MSG is used in commercial cooking to enhance the flavors of many common processed foods including canned soups, frozen dinners, seasoning mixtures, and fast foods. Many fermented products have naturally occurring glutamate, like Worcestershire sauce, soy sauce and steak sauces. Glutamate is also in many other additives like soy extracts, protein isolate, hydrolyzed vegetable protein, hydrolyzed soy protein, hydrolyzed yeast, and autolyzed yeast. MSG is not always easy to identify on a label. Be on the lookout for words like “spices” and “natural flavorings” on a food label, which means it might contain MSG. Two food additives, “disodium guanylate” and “disodium inosinate” are only used with MSG, so if they’re on the label, there’s a high likelihood that MSG is in that product.

Glutamic acid, which MSG is made from, is classified as an excitotoxin. However, it is considered to be GRAS by the FDA. Many people are affected by MSG, and children who have special needs are especially vulnerable since they might not be able to communicate their discomfort, which may manifest as a headache or nausea. Removing artificial flavors from your child’s diet is the safe way to go, and could help to reduce behavioral problems.

Artificial preservatives, such as butylated hydroxytoluene (BHT) and butylated hydroxyanisole (BHA) are being investigated for provoking chemical sensitivities. These preservatives have been associated with causing broncho spasm, rhinitis and more particularly in triggering hives (uticaria). Many studies on mice have shown that these preservatives cause learning deficits, difficult sleeping, developmental delays, aggression, decreased orientation reflex. Key reasons in removing artificial preservatives from the diet because that could also relieve behavioral symptoms such as aggression, hyperactivity, developmental delays.

Artificial sweeteners are much sweeter than table sugar, “sucrose,” and can interrupt neurotransmitter balance, which could make behavioral symptoms worse.

The following sweeteners have been tested for their safety through the Center for Science in the public interest. Aspartame which goes by Nutra-sweet, Natra-taste and Equal, is one that people who have Phenylketonuria (PKU) have to avoid because they can’t break down phenylalanine which can accumulate to toxic levels. Sorbitol, xylitol, mannitol, maltitol, lactitol, isomalt, erythritol, and hydrogenated starch hydrolysates are sugar alcohols that can cause stomach discomfort and diarrhea. Acessulfame known as Sunnet, Sweet One, and acessulfame potassium, should have more testing and should be avoided because rat studies found that it caused tumors, mostly benign but some malignant. Saccharin, which is Sweet n Low, may cause cancer. Stevia can’t be metabolized in our bodies which is why it has zero calories. More testing should be done on its safety. Sucralose, which is Splenda, is actually sugar chemically combined with chlorine…Buyer beware! Tagatose, a very new type of sugar made from milk sugar lactose, can cause digestive issues such as gas, bloating and nausea because it’s not well absorbed. It can be found in Diet Pepsi, Slurpees from 7-11, etc.

These are a few examples of why package label reading is essential in today’s world. Many of the sugar substitutes mentioned are found in gum, yogurts, baked goods, and drinks, including iced tea, soda and juices. It is safest to use natural forms of sweeteners. Some of the best include organic honey and turbinado sugar, which is raw sugar crystals formed by spinning the sugar in a centrifuge. The juice released is crystallized to keep the rich molasses color and flavor, and it’s less processed than conventional table sugar. Sucanat is the trademark name for the turbinado process.

Trans-fat is the end result of hydrogenation, the process in which hydrogen is added to liquid vegetable oil. Partially hydrogenated fats contain Trans-fat, and are less expensive and have a longer shelf life than standard fats. Trans-fats interfere with an enzyme called delta 6 desaturase, which is important in converting essential fatty acids Omega-3 and Omega-6 fatty acids to the active form (ARA) arachidonic acid, (EPA) eicosapentaenoic acid, and (DHA) docosahexaenoic acid used by the brain. It is important to avoid Trans-fat and partially hydrogenated vegetable oils. A deficiency of 6 desaturase causes a deficiency of ARA, EPA and DHA, which are important for brain development, brain functioning, brain signaling and proper vision processing. Research has shown that children who have Autism, ADD, ADHD, dyslexia, and dyspraxia may have low levels of 6 desaturase so when they eat foods containing Trans-fat or partially hydrogenated vegetable oils, it can make these conditions worse (1). To increase the activity of the desaturase enzymes, it is important that the diet includes an adequate amount of vitamin B3, vitamin B6, vitamin C, magnesium and zinc which are available by eating local organic fruit, vegetables, whole grains, organic yogurt, and meat, nuts and seeds (2).

Including foods rich in Omega-3 fatty acids cannot be overemphasized. Some basic sources are wild Alaskan salmon, seaweed, eggs from hens fed a diet high in Omega-3’s, flaxseeds, pumpkin seeds, walnuts and algae. Caveat: To ensure food supplements are free of mercury, use either an algae-based or fish oil Omega-3 fatty acid supplement, which is third party-certified and molecularly distilled.

By purchasing organic-labeled products, you’re guaranteed that the foods you’re feeding your family are free of artificial color, flavor, preservatives, trans-fat and pesticides. Not all products have the USDA organic seal because certification is voluntary and expensive. So it’s important to read the labels carefully to know what you’re really buying. To have the USDA seal means a product is comprised of 95 percent organic ingredients. Foods that have at least 70 percent organic ingredients can use the phrase “made with organic ingredients” and list up to 3 ingredients. If the product has less than 70 percent organic ingredients the name of the organic ingredients can be included on the food label.

To get back to basics, incorporate the Real Food Moms three P’s: Plan, Purchase and Prepare real food! This takes a little organization, but you are ensuring delicious, unprocessed food for you and your family. You should definitely see some behavior and long-term health benefits for the entire family.

Get more from the Real Food Moms at their blog!

Stordy, B. Jacqueline. Dark adaptation, motor skills, docosahexaenoic acid, and dyslexia. American Journal of Clinical Nutrition, Vol. 71 (suppl), January 2000, pp. 323S-26S

Osmundsen H, Clouet P. Metabolic effects of omega-3 fatty acids. Biofactors 2000;13(1-4):5-8 2000. PMID:15800.

Republished from January 2011

What can we learn from children diagnosed with life threatening illnesses?

September 11, 2011 in Featured, From Julia by Julia Roberts

They had no idea their lives would change so significantly.

Up until January 7, 2005 Ruthe Rosen enjoyed the “perfect life.” Well okay maybe it wasn’t perfect, but let’s just say it was normal. But things changed drastically overnight.  Her daughter Karla was diagnosed with an inoperable tumor at the age of 14.

She was in the middle of her early teen years with all the excitement, drama, mood swings, hormones, and changes those early years entail. But then there were the headaches, that came suddenly and were so sudden and severe they would drop her to her knees in agony. After one episode they decided to go get a CT scan.

Then the phone call came.  There would be no dance practice today.  They found a mass growing on Karla’s nervous system.

For one year, Ruthe Rosen and her family did more than cope with the unimaginable, they embraced it. In their love and faith they found the strength to be there for Karla in every way. Karla had brain surgery and was in and out of hospitals (one stay was for an entire month). She had several sudden emergency room trips, bouncing back and forth between doctors. She endured chemo therapy and radiation treatments daily, simultaneously.

For a while, she regained her spirit and even went back to playing on the soccer field.  She amazed everyone. But after a year of hopes lifted and hopes dashed, 15 year old Karla suddenly lost her fight and died of inoperable cancer.

In Never Give Up, Ruthe Rosen tells the story of how she and her family immersed themselves in the ordeal of taking care of her daughter. She discovered her daughters’ courage and unwavering optimism. She realized that although she was scared she never succumbed to self-pity or despair, and because of her spirit and uplifting outlook, neither did the people around her.

Drawing upon the wisdom and personal experiences she acquired, she skillfully takes the mystery out of the many lessons to be learned from her daughter’s experience.  She describes how to provide caring support that allows the family to maintain a sense of normalcy in their lives and sustain hope as they battle the most serious illnesses.  She offers important and helpful guidance for those forced to face the reality of being a caregiver for a seriously ill family member. Here are just some of the valuable insights:

Embrace the journey. Take one day at a time.

In order to embrace it, you must first accept it. You don’t have to understand it all nor be able to figure it all out, but no matter how dark your struggle, embrace every single moment of it or you will miss the opportunity to find joy and purpose.

Plan for your tomorrow but live in your today.

If you spend your time worrying about the if’s and what might’s instead of enjoying the right now’s it will rob you of your joy today. Sometimes you just have to say, “If it’s not happening and it’s not a fact, then I don’t want to talk about it.”

Reserve the right to crash at anytime. Embrace the crash when it comes.

It is okay to be sad, mad, depressed, empty, lost…embrace it! Feel! Live it! Then get the heck out of dodge so it doesn’t consume you.

Stare down your fears. Look them straight in the eyes.

Don’t turn and run, because if you can find the courage to look it in the eyes, you have just accepted one of God’s greatest gifts of strength.

Maintain a sense of normalcy and you will discover your new normal

Continuing the activities and the routines as best as possible for your other children allows them to still be kids and not bring worry and fear to them. Keep it real, and so you don’t lose yourself in the chaos of circumstances.  When you find yourself experiencing rare moments of normalcy, don’t feel guilty, soak it up and enjoy it and give yourself the gift of not worrying about tomorrow.

Just because life has taken away some of our choices, doesn’t mean it has taken away all of our choices.

Make the ones still available to you. Sometimes being selfish is the most generous thing you can do you for a sick loved one.

Even if something terrible is happening doesn’t mean you can’t laugh

Find humor in the moments that you can. True laughter shared with a loved one, no matter what the circumstances is never inappropriate.

Expect days that you will doubt your faith.  They will come.

And when it happens, get your strength from what you know not what you are feeling at the time. Faith isn’t about believing everything will be all right; it’s about knowing you’ll be prepared when it isn’t.

No matter what the percentage of the prognosis given to you by your doctor; living everyday with 100 percent hope is a choice. And just remember ….

Never Give Up

How to Find Hope and Purpose in Adversity

Ruthe Rosen

 

ISBN 978-1-879384-86-6

Published by Cypress House

Publication date September 15, 2011

Ruthe Rosen’s purpose is to provide a message of hope and inspiration to those who are facing challenges in their lives.

“I want them to have confidence that they, too, can find purpose in their pain, and know that one day they will be happy again.”

Ruthe Rosen

About the Author

After Karla died, Ruthe Rosen and her husband Michael embarked on a mission to reach out to strangers who need help and return the kindness they experienced from the remarkable girl who refused to be anything but grateful.  They created The Let It Be Foundation, which helps families with children who have been diagnosed with life threatening illnesses or medical conditions. The Let It Be Foundation provides such services as housekeeping, grocery shopping and meals, opportunities for family recreation and help in meeting the needs of siblings during difficult times. They live with their sons Brandon and Cole in Chino Hills.

Proceeds from this book will benefit the Let It be Foundation www.theletitbefoundation.org

 

Published from press release.

There are side-effects to surviving

December 6, 2010 in Future Glimpse by Admin Dawn

Bee LavenderBee Lavender is the author of the award-winning memoir Lessons in Taxidermy: Diagnosed with cancer at age twelve and perilously pregnant at eighteen, surviving surgeries and violent accidents: Sometimes you can’t believe Bee Lavender is still alive; sometimes you think nothing could kill her. Lessons in Taxidermy is Lavender’s fierce and expressive search for truth and an elusive sense of safety. This autobiographical tale is stark and resolved, but strangely euphoric, tying together moments and memories into a frantic, delicate, and often transcendently funny account of anguish and confusion, pain and poverty, isolation and illusion. While staying conscious of the particulars of her circumstances, Lavender frames her life in the context of history, traveling, landscape, and freak show culture. Lessons in Taxidermy is apocryphal, troubling, cathartic, and important.

We interviewed Bee about her experiences to ask her what parents can do to help their children who are going through a medical crisis.

Children who have been seriously ill go to a place where they are absolutely alone and where their parents can’t follow. How can parents support their children as they face these very scary challenges?

The first and fundamental principle is simple: always tell the truth. No matter how difficult, unwieldy, or frightening, it is better by far to acknowledge what is actually happening. Yes, this is hard – especially if you are talking about painful and messy procedures, serious permanent disabilities, or the possibility of death. But even the youngest children have the capacity to understand what is happening, and developing a framework will help them cope with the process. Saying “this will hurt” is always better than pretending otherwise. Saying “we don’t know what will happen” is always better than promising a miracle that might not come.

Truth doesn’t hurt. Surgeries hurt.

In your book, you write about your ability to separate your body from your mind in an effort to deal with the pain of your cancer. Have you been able to come back to your physical self? Do you have thoughts about how parents can help their children retain that sense of self?

It is fair to say that sustained and routine trauma is not a desirable formative experience. In my particular case, I learned to compartmentalise. Pain and pleasure go in separate boxes, learning and love happen on their own. It took several years before I could even let the food on my plate touch, let alone the emotions or whatever you want to call the stuff boiling around in your brain and chest. I had to take small and incremental steps toward normal behaviour – the ability to think, yearn, fail, all at once, losing control, letting life happen, feeling it.

I still lack certain forms of empathy. I grasp that there are no hierarchies of suffering, yet I am dismissive of pain in myself and others. When my friends (or children) complain about something they find deeply important, I often catch myself thinking they should go get some real problems. Though at least I have learned to think it instead of saying it out loud.

There is no tidy way to help a kid in similar circumstances. There are side-effects to surviving.

How has being a writer helped you process your experience? Do you think parents should help their children journal (either via writing or pictures)?

From my earliest years I remember thinking that words were my friends, and putting them in a certain order to convey stories was a tremendous distraction from all manner of mayhem. From about age five or so I wrote fiction, and the activity was hugely entertaining and a much needed distraction. Other children might have a different set of needs, but I think that the desire for escape is valid and necessary.

Distraction, even obsession, can be better than therapy, when your life is organised around medical treatments. By the time I was eighteen years old I had several hundred surgical scars on my body and I would have rather stabbed myself in the eye than talk about my illness: dreary, boring, obnoxious illness! Cancer, cancer, cancer, ugh. Give me a movie, a concert, a new album to listen to, book to read…. art, literature, and politics offered solace and a way forward. For other people it might be sports, video games, knitting, whatever, just something external, something to think about other than the failures of the body.

I didn’t keep journals as a child, and never wrote directly about my illness until I was about 29. I don’t think it would have helped *me*, except to keep track of dates for later publication. In fact, I don’t think documenting the experience would have been especially healthy, because doing so would have been another way of assigning a privileged meaning. I think the most empowering thing is to learn to say “the disability is part of me, but it does not define me.”

Did you feel you had to protect your parents from your fears? Is there something they could have done to relieve some of that burden?

Yes, I wanted to protect them, and the need to do so was both explicit (I was told not to cry) and implied (being brave made it easier for everyone to play their part). I agreed with these values at the time and I still do. Life was seriously difficult for me, but my parents were there too. They had to watch me suffer, but they also had to deal with the administrative details, and pay the bills. Even now, with children of my own, I simply cannot imagine the anguish they were forced to endure. I was stoic, but my parents were heroic.

Decades later and thousands of miles away, my first thought when I have a medical appointment is how to prevent my mother worrying about me, or knowing at all. If I had one magical wish it would be to take away the pain that she suffered raising a sick kid. Both of my parents did their absolute best in a terrible situation, and asking for more – for niceties of behaviour or etiquette – is foolhardy at best.

The only way our collective burden could have been relieved was simple, and structural. My health insurance came from my mother’s job. The money to pay what the insurance didn’t cover came from the overtime both parents worked. I was literally alone, because they both had to work desperately hard – just to keep me alive.

The only thing that could have relieved our collective burden would have been universal health insurance. I believe that every citizen of a wealthy nation should have access to basic medical care. I moved to England six years ago because of the National Health Service, and I have no plans to move back home until health care reform is a reality instead of a promise. I do not want any of my loved ones to sacrifice their dreams to my illness.

Finally, medical issues force children to give up control of their bodies and their physical privacy in lots of ways. Do you have any thoughts about how parents can protect their children or give them some measure of autonomy given the reality of their medical needs?

In a purely practical sense this is an unobtainable goal. Whether you are talking about a crisis medical situation or long-term maintenance of a disability, you just can’t expect much privacy. Your body is being inspected for a reason, and the people looking are generally doing their best to help.

However, I do think there are limits. Speaking as someone with an “interesting” and rare disorder, there have been countless times when an examination seemed to be more for the prurient interest of staff than any clinical reason. Sometimes I have no choice but to cooperate, especially when using teaching hospitals. But I always make an effort to achieve at least a symbolic level of privacy.

This can be as simple as insisting on a curtain around the examination table, or an introduction to the people poking my flesh.

But privacy is more than just showing skin. It is about control, autonomy, narrative. The best thing that my parents did was allow me to own my story – to decide when and how to talk about the disease. Or not.

Kids, Cancer and Clinical Trials: Parents Are Confused

October 29, 2010 in Special Needs News by Admin Dawn

Fifty years ago, a diagnosis of childhood leukemia meant you needed to start planning your child’s funeral. Now it’s got an 85% cure rate, largely due to advances attributed to information gleaned from pediatric clinical trials. Yet those same pediatric cancer trials that are such a treasure trove of data are also causing parents of the sick kids considerable angst.

Unlike adult cancer patients, the majority of pediatric cancer patients — or, more accurately, their parents — are asked to take part in a clinical trial. About 80% of parents accept. (More on Time.com: Fertility Preservation for Young Cancer Patients)

Each year, about 10,000 children are diagnosed with cancer. Although it’s the second leading cause of death for children between the ages of 5 and 14, after accidental injuries, “childhood cancer is a rare disease and the only way we are going to make progress is to be very systematic about the way we do research,” says Steven Joffe, an ethicist and pediatric hematologist/oncologist at Dana-Farber/Children’s Hospital Cancer Center. “The pioneers in the field realized if we don’t make clinical trials an integral part of what we do, we will never make progress.”

via Kids, Cancer and Clinical Trials: Parents Are Confused – TIME Healthland.

Discussions in Pediatric End of Life

October 26, 2010 in From the Hospital, Insider Insight by Children's Healthcare of Atlanta

By Maura A. Savage, MSW LCSW OSW-C

Aflac Cancer Center and Blood Disorders Service of Children’s Healthcare of Atlanta

Society is recognizing and celebrating the individual’s right to make healthcare decisions especially as they impact death and dying. Making one’s wishes known allows an individual the opportunity to maintain control, face their own mortality, and hopefully, die with peace and dignity. These powerful goals must be integrated into pediatric care. Just because a child does not have the legal right to make decisions, they do have much to say about living their life, what they want, and ultimately, what it is like to be dying. No child should die isolated or in pain, physically or psychically, because care providers and parents are unwilling or unable to talk about the death process and wishes for quality of life.

One of the biggest clinical challenges is how to help the child have a voice while respecting parental autonomy. A parent’s natural instinct is to protect their child from harmful and scary things. How frightening that after battling a disease so hard, there is no protection from death. Parents can feel that by talking about death, they are talking away hope or somehow, by speaking of it, causing the death of their child. Research and practice shows us that children, even ones who are quite young, have a keen understanding of what is going on with their body. As much as parents try to protect their children, children actually end up protecting their parents.

Talking to kids about death

It is imperative that healthcare professionals use open and appropriate language around death and dying. This open and honest dialogue must first come from the physician. If healthcare providers cannot use the words “death”, “dying” or “die”, how can we expect parents to begin this conversation with their child? We must model that this is an ok subject to talk about. One lesson I have learned over the years is that there is not a family who has a critically ill child that has not thought about the possibility of their child’s premature death. The healthcare provider is not opening a new topic, only giving voice to something already felt.

On the other hand, families cannot continuously stay in this conversation. It is not crazy for a family to talk about impending death and in the next breath, talk about remission. As facilitators of this conversation, we must always respect hope. Do not confuse hope with denial.

Giving parents the opportunity to get more comfortable with the discussion of the potential death will allow them to begin talking with their child about their life and their wishes. While professional staff can and should talk to children, they must not do this without the knowledge and permission of the parents. Information given to children should reflect their developmental level. It is interesting to note that more often than not, conversations about death are initiated by the child. I think of a six-year-old girl with relapsed leukemia. It was becoming clear that her disease no longer responded to medical treatment. Her parents were reluctant to talk with her. It was the beginning of November. This child drew a picture of a table in the sky. On the table was Thanksgiving dinner and at the table sat the child and Jesus. It became very clear that she was trying to let her mother know that her Thanksgiving dinner would be in heaven. The mother was finally able to discuss with the medical team her child going home on hospice and discussing a peaceful death.

Giving children control over their medical wishes

Facilitating the conversation between parent and child can allow for even a young child to have some control over their situation. After working with a family and helping the parents come to terms with the impending loss of their child, the parents were able to take the next step and talk with their seven-year-old daughter. Using books and reflecting their religious faith, this family was able to talk to their daughter about dying and heaven and what that might be like. This child understood very quickly and began to make some arrangements. She wanted to make sure that her younger sister got her money. However, she told her sister she could only spend it in a “Hello Kitty” store. To drive the point home, she told her sister she “better do it, because I will be watching from heaven!”

As children get older, they can get more specific about their medical wishes. Children who have battled illness for a long time have a very advanced knowledge of medical treatment and care. Recently, a ten-year-old patient stated to his care team that he “did not want to be alone in the ICU.” Although he did not use the word “die” it was clear in discussions with him that that was what he was afraid of. While not old enough to execute a legal advanced directive, it is impossible to ignore a patient’s strong wish. Unfortunately, the parents could not “hear” this request from their son, and he did die in the ICU. The family was not present. While we could not honor his request about being in the ICU, we, as members of his care team, stayed with him as he was dying, assuring him he was not alone.

Giving space for a child old enough to understand medical treatment and impact to discuss their wishes with their family generally can provide clarity and comfort to all involved. Parents as surrogate decision-makers agonize over choices. One family of a five-year-old boy diagnosed with Ewing’s Sarcoma struggled with the decision to amputate his leg. The parents did research and kept a journal of how they came to the treatment decision so if their son asked why later in life he had no leg they could explain how they came to that decision. We rehearsed the conversation together, and they then went home to tell him. In the morning, the mother shared that while it was so very hard to tell him, she was so glad she did. The parents told their son he would loose his leg. The little boy thought about it and told his parents, “Its ok, its not my leg that makes me Stephen, it is my heart.” What a gift.

One does not recover from a death of a child. One learns ways to go on, to live with the void. This loss can be eased with the knowledge that while death would be inevitable that there was peace in the passing. Having the opportunity to talk about the experience, no matter how painful initially, gives some comfort. Knowing that all decisions made were the best ones that could be made at the time based on the families values and needs helps the healing process. I think of Ashley, a beautiful dancer, dying of a brain tumor. Just before she slipped into a coma from which she never woke, turned to her mother and said “thank you for taking such good care of me.” What a motivation to keep families talking.

Fibrous dysplasia: a disease very few people know about

October 7, 2010 in Special Needs News by Admin Dawn

Camryn Berry is a sixth-grader dealing with a disease few people have encountered. The tall, thin girl with long dark hair is recovering from her fourth surgery for fibrous dysplasia — a disease that causes a facial tumor that can disfigure her face and disrupt her breathing.

She sits on the on the soccer sidelines watching her brother Caleb, 14, instead of playing.

According to information posted on the Children’s Cranial Facial Association’s website, fibrous dysplasia is a noncancerous skeletal condition in which bone is replaced by structurally weaker tissue. The process continues until bones stop growing.

“The disease, truthfully, isn’t much fun,” 11-year-old Camryn wrote in an e-mail. “I like to play basketball as well as soccer. I am restricted from physical activity for three months. I really hope that I don’t have to miss out on basketball, too.”

She’s a talented writer, but shy about speaking on the phone about the disease that affects her life.

“I definitely don’t like the surprising wakeups in the middle of the night with throbbing teeth pain,” she said. “But, on the other hand, I am so glad that I am getting this experience because, before I was diagnosed, we didn’t even know, let alone think about, all the people and children with these facial differences.

Read more here: Fibrous dysplasia a diseasevery few people know about | The Kennebec Journal, Augusta, ME.

‘My son Dylan has special needs’: Michael Douglas reveals the reason his family left Bermuda for New York | Mail Online

September 23, 2010 in Special Needs News by Admin Dawn

Michael Douglas has revealed his ten-year-old young son has ‘some special needs’.

The actor, 65, said he and wife Catherine Zeta-Jones decided to move from Bermuda back to New York so Dylan could get the treatment he needed.

‘One of our kids has some special needs and it was recommended he go to a special school in the New York area,’ he said, although he didn’t specify what the exact nature of the ‘special needs’ is.

The Wall Street star, who is currently undergoing chemotherapy as he battles throat cancer, said the move enabled his wife to take on the Broadway role in A Little Night Music.

This summer she received a Tony award for her role in the Stephen Sondheim classic.

On making the decision to move to the East Coast, he added Catherine said: ‘Well, look, I’ll do a musical.’

Read more here: ‘My son Dylan has special needs’: Michael Douglas reveals the reason his family left Bermuda for New York | Mail Online.

Key pathway implicated in progression of childhood cancer found

September 22, 2010 in Special Needs News by Admin Dawn

Scientists have found a protein crucial for the immune response that appears as a key player in the progression of a devastating form of childhood leukemia called T-cell acute lymphoblastic leukemia (T-ALL).

Suppressing the activity of the protein kills the leukemic cells, the study shows, opening a potential avenue to new drugs that could prevent progression of the disease.

Led by Iannis Aifantis of New York University and colleagues at the Institute Municipal d’Investigacions Mediques in Barcelona, the new study discovered the protein by picking up on a bit of cross-talk, or conversation, between two unrelated genes.

“We are very excited about this discovery because small molecule drugs that block this protein are already in development.

“We plan to continue to study these inhibitors in the laboratory with the aim of evaluating the feasibility of testing such drugs in patients,” said Aifantis.

Read more here: Key pathway implicated in progression of childhood cancer found – Sci/Tech – DNA.

Protein that helps growth of childhood cancer found

September 17, 2010 in Special Needs News by Admin Dawn

Scientists have identified a protein that plays a crucial role in the progression of a devastating form of childhood cancer called T-cell acute lymphoblastic leukaemia (T-ALL), a finding that could lead to new drugs for treating the disease.

Scientists at the New York University Langone Medical Centre found that the protein called NF-kB (short for nuclear factor kB), which is crucial for the immune response, appears to be a key player in the progression of T-ALL — the most common type of cancer in children.

The researchers, who detailed their study in the journal Cancer Cell, also found that when the activities of the protein were suppressed it killed the leukemic cells, opening a potential avenue to new drugs that could prevent progression of the disease.

Read more here: Protein that helps growth of childhood cancer found.

MPPs’ report on mental health fails to consider children, youth, experts say

September 17, 2010 in Special Needs News by Admin Dawn

A report calling on Ontario to overhaul its mental-health and addictions programs is a promising step, but doesn’t go far enough in addressing the needs of children and urgent-care patients, observers say.

And at a time when the McGuinty government is attempting to rein in health-care costs, experts worry that without sufficient funding and political will, the report will fail to bring meaningful change.

“When you look at the sector, it’s already underfunded with respect to other medical services,” such as cancer and cardiac care, said Dr. Rajiv Bhatla, chief psychiatrist at the Royal Ottawa Health Care Group.

“My worry, especially when you look at the constraints within the health-care sector, is that mental health and addictions will be sacrificed prior to other services.”

Read more here: MPPs’ report on mental health fails to consider children, youth, experts say.

%d bloggers like this: