http://parentresourceguide.org/guide/ Resources for the Curing Phase en-us Nucleus CMS v3.32 © Weblog http://backend.userland.com/rss http://parentresourceguide.org/guide//nucleus/nucleus2.gif http://parentresourceguide.org/guide/ http://parentresourceguide.org/guide/index.php?itemid=37 "I have an appointment tomorrow to talk with the pediatrician about my daughter's condition. I am afraid I won't be able to take in all of the information. I am feeling so emotional, sometimes what the doctor says is so hard to hear that I just can't take it all in."It’s 3:00 o’clock in the morning and it looks like it’s going to be another sleepless night…

The next day at the pediatrician’s office, you and your child are both blurry eyed, tired and cranky – add to that a hint of worry and a touch of stress, and it’s a wonder you remember anything when you walk out the door. We have learned a few tricks on how you can help your child’s doctor best answer your questions and make the most out of each office visit.

Here are a few things you can do to prepare.

1. Jot down your child’s symptoms, for example:
• How many days have they been sick?
• Have they been eating and drinking?
• Have they had a fever? If so how high and for how long? Remember not every child who feels warm has a fever.
• Have they been in contact with any other sick kids or adults? Don’t forget to take into account daycare, playmates, visitors, etc.
• Are they going to the bathroom?
• Are there any other medical conditions of which you need to remind the doctor? Don’t hesitate to gently remind your child’s doctor of any pre-existing conditions.

2. Make a list of your questions. That is the best way to be sure that you get all your questions answered.

3. Be aware of and share with your child’s doctor any medical problems in your family, for example diabetes, high blood pressure, heart problems, etc., and of the frequency and severity of your child’s symptoms.

4. Always take a pad and pencil with you to your appointment so that you can write down what your doctor says and review it later when you are calmer and have more time to digest the information. A tape recorder is also helpful. Better yet, have a friend or family member accompany you.

5. Make sure you understand the diagnosis. A few questions you might want to ask are:
• Does my child need any additional testing – x-rays, cultures, blood work?
• If so, when will we know the results? Don’t be afraid to call for the test results if you don’t hear back from the doctor’s office.
• How do you know he has __________?
• Are there other names for my child’s condition?
• How will this affect my child’s body?
• What needs to happen next?
• Is it contagious? If so, who do I need to tell – teacher, daycare, friends, family members, etc? Remember babies and older adults are more vulnerable to any contagious illness.

6 Make sure you understand the treatment. Don’t be afraid to ask:
• What treatment do you recommend and why?
• Are there alternatives?
• Are there side effects?
• How long before I should see some improvement?
• How will I know my child is improving?
• When should I make another appointment with the doctor?
• Can my child continue going to school/sports/activities during treatment?

7. Remember, you don’t have to ‘get it all’ in one visit.
Most illnesses, especially serious ones, evolve with time and so does the doctor’s understanding—both of the illness and of your child and your own understanding. Ask—if the doctor doesn’t offer—when you can call/visit with more questions or clarification— especially if information you have received about your child’s health is unclear, startling/new, or complex.

8. If you need things repeated, ask again.
Don’t be afraid to ask to have information repeated as many times as needed. We want you to have a good understanding of the diagnosis and recommended treatment.

9. Remember there are no stupid questions – if you don’t understand or don’t know, ask, so you don’t end up back in the office or in the emergency room unnecessarily.

Article contributed by Dr. Michelle Simon, MD, PhD
Pediatric Group of Watsonville, CA and Fellow, American Academy of Pediatrics
Children's Hospice & Palliative Care Coalition www.ChildrensHospice.Org
]]> General http://parentresourceguide.org/guide/index.php?itemid=37 Wed, 29 Mar 2006 09:48:54 -0600 http://parentresourceguide.org/guide/index.php?itemid=38 "My child has not been feeling well and from the looks of it, it's probably something serious. This will affect my whole family in ways I cannot imagine. I have an appointment with the pediatrician, what can I ask?"Be sure to read the article "Talking with Your Child's Doctor" and if the news is bad...if it is a complicated or serious illnesses, there are a few additional things to consider and ask your doctor:

1. Your doctor and you may want another opinion. Ask your child’s doctor “what other resources are available to me locally?” A good doctor will respect your diligence and responsibility. We want you to feel confident that you are doing all that you can to best care for your child.

2. Don’t go at this alone. Remember when a child is diagnosed with an illness, especially a serious one, the entire family’s life is affected by the diagnosis and treatment. Ask your child’s doctor to recommend additional family support that may be available in your community. If it is too difficult for you to make contact yourself, perhaps your doctor can contact a local counseling practice or church on your behalf. You will need to sign written permission for him/her to make contact for you.

3. Ask the doctor if your family will have a social worker assigned to help you sort out what resources are available to you and your family. Once a social worker is assigned, they will become your advocate in accessing additional support. Until then, be diligent with your doctor. Don't be afraid to let him or her know what you need even if they seem busy!

4. Remember your other children and be aware that often siblings suffer in silence. They feel guilty or selfish asking for help for themselves when their brother or sister is ill and their parents are already worried and stressed. Don’t be afraid to talk to them about their brother or sister’s illness. You'll find a great deal of information about siblings and family issues on this site.

5. Don’t believe everything you read on the Internet or in the newspaper – there is lot of bad and/or inaccurate information out there. If you want to do more research on your child’s diagnosis, ask your child’s doctor to recommend reputable and credible websites. The American Academy of Pediatric’s website (www.aap.org) is a wonderful resource. Your child’s doctor can also help with interpreting information you come across on the Internet, so print it out and bring it along on your next visit.

6. Remember as a parent you know your child best. You can often read your child’s face, gauge their emotions and anticipate their responses. This is valuable information for the doctor to have when treating your child.

Article contributed by Dr. Michelle Simon, MD, PhD
Pediatric Group of Watsonville, CA and Fellow, American Academy of Pediatrics
Children's Hospice & Palliative Care Coalition www.ChildrensHospice.Org
]]> General http://parentresourceguide.org/guide/index.php?itemid=38 Tue, 28 Mar 2006 10:11:00 -0600 http://parentresourceguide.org/guide/index.php?itemid=55 "Since my child's diagnosis, I seem to be losing hope and I am looking at the whole world as a bad place. I used to be so optimistic. Where is hope in all of this?"Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all¡K

--Emily Dickenson


What Life is Like for You

The diagnosis of your child with a life-threatening condition strips away all the superficialities in life. You're focused on the essentials. This mindset, says anthropologist and author Angeles Arrien, is the Way of the Healer. "The Way of the Healer or Caretaker," she writes, "is to pay attention to what has heart and meaning." Paying attention to what has heart and meaning opens us and gives us access to the deepest of human resources: love, gratitude, acknowledgment, validation and hope.

As parents working to treat their child's disease and to cope with the devastation, we need to focus our energy like a laser. With our child's life at stake, we are called to be the champions for our child and his or her needs. As child advocates, we may need to challenge convention in order to carve a new path of discovery. We may need to push beyond perceived limits in areas of research, treatment and care. Hope lights the way in this quest for answers for our child.

Hope is your greatest ally. You hope that your child will survive this illness and go on to live a normal life. This hope is the motivator, mobilizer, and energizer that keeps you going. Nurture your hope, even in the midst of obstacles. Recognize when your hope needs bolstering and seek support both from the outside and from within yourself. Keep the flame burning.

What is Hope?
To hope is to "look forward to with confidence or expectation" (American Heritage Dictionary of the English Language, 3rd edition, 1996). It is the capacity to transcend our immediate circumstances and not only see that there are other possibilities, but also believe in their coming true.

Hope is a wellspring of inner strength. It evokes a light at the end of the tunnel. It tells us there will be an end to the darkness. Hope is like a candle, a fragile but compelling source of luminosity that illuminates the way through a complex and difficult journey.

Hope gives us many gifts. Hope:
- Gives us the strength and fortitude to sustain long periods of pain and discomfort.
- Helps us rise above feelings of despair.
- Gives us the resolve to persevere through¡Xand sometimes fight our way through¡Xthe medical system as we search for the best course of treatment for our child.
- Gives us the determination and courage to be a strong advocate for our child.
- Inspires others. Hope is infectious. If we as parents are hopeful, we can inspire medical professionals to optimize care and/or take calculated risks. It can inspire your community to rally around your child and family.


What to Think About and Do with Respect to Hope When Your Child Has a Serious Illness

Recognize Your Relationship to Hope
How full is your reservoir of hope? Some people tend to be generally more hopeful or optimistic than others. There are many possible reasons for this, but they are not so important. The more important thing is to recognize where you are with respect to hope and, if you feel you need to shore up your hope, do something about it.

Hope can be bolstered by practicing attitudes such as: -
Patience Tolerate delays, and work up to a sense of overall calm that lets events unfold in their own time.
- Persistence Have the determination to keep going no matter what the obstacles.
- Courage Develop an attitude of confidence even when facing the unknown. You can work on this from the outside-in. Start by "faking it" on the outside until you "make it" on the inside.
- Serenity Work as hard as you can, giving it your all, then release any attachment you may have to the outcome. Practice a sense of composure and quiet stillness. Think "all will be well," and mean it.
- Optimism Keep a vision of a positive outcome.

Optimism is closely related to hope. Psychologist Martin Seligman, the author of Authentic Happiness, suggests that we can learn to build up our sense of optimism. It¡¦s a matter of recognizing the pessimistic thoughts that can take you into a downward spiral, and learning how to argue with them. He calls this the "ABCDE model" First, recognize that Adversity is likely to test/trigger certain Beliefs.

Strain on Marriage
The fact that your marriage is undergoing some stress because of your child¡¦s illness may start you to think about the possibility of divorce. Underlying that thought are some beliefs. We all have many unexamined beliefs, many of them negative. They may be beliefs about the strength of your marriage, or about your spouse¡¦s ability to deal with stress, or doubts about your own resiliency. These beliefs have Consequences. They can lead to sinking or panicky feelings. You might even start a quarrel with your spouse over nothing. The way out is by Disputing those beliefs when they arise. Say to yourself, "Hang on a second. Is this really who I am? Who my spouse is? Or am I overly tired or stressed? Could that be making me more vulnerable to being hijacked by negative beliefs? Isn't it actually true that we love each other a lot, have excellent communication, and that our marriage is really very strong? "You will feel Energized when you dispute the pessimistic thoughts successfully. You will feel lighter and more focused." (Seligman, pp. 93-94)


Recognize that Others May Have a Different Relationship to Hope
It is possible that others who are close to you will be in a different place with respect to hope. They may be feeling more or less hopeful than you are. This can be stressful, especially if it¡¦s your spouse (or someone else who is close and involved in decision-making for your child) who has the different view. It¡¦s important to recognize when there are conflicting levels of hope. Then, consciously work on aligning your differing points of view. Support each other in developing your relationship with hope.


Some Resources
What are Some Sources of Hope?
Here are some sources you can turn to that will help you bolster and maintain hope. Your most important inner resource is your belief system. How do you nourish your reservoirs of hope? Many find solace in turning to a Divine Source. Do you pray? Meditate? Walk in nature? Do you have a spiritual advisor?

There are also external sources you can turn to for support in keeping your hope strong and vibrant:
People, such as your spouse, other family members and or friends. Hope seems to be a social phenomenon. We can " catch it from others and others can stoke it in us. Reach out to people who are strong in hope. These people may be clergy or spiritual advisors, they may be people who have gone through a similar struggle as yours, or they may just be friends.

Stories of Hope in Books - Hope has many faces.
It All Begins with Hope: Patients, Caregivers and the Bereaved Speak Out by Dr. Ronna F. Jevne
Finding Hope: Ways to See Life in a Brighter Light by Dr. Ronna F. Jevne and James E. Miller
Hoping, Coping & Moping: Handling Life When Illness Makes It Tough by Dr. Ronna F. Jevne
Authentic Happiness by Martin Seligman
Hope and Despair: How Perceptions of the Future Shape Human Behavior by Anthony Reading, M.B., B.S., M.P.H., Sc.D.
Chronic Kids, Constant Hope by Elizabeth Hoekstra and Mary Bradford
The Resilient Family by Paul W. Power, Sc.D., and Arthur Dell Orto, Ph.D
Shelter from the Storm by Joanne Hilden, M.D., and Daniel R. Tobin, M.D., with Karen Lindsey
Poetry and Quotations

Music that inspires you
Movies
Lorenzo's Oil
Web Sites
Authentic Happiness
The Hope Foundation of Alberta < http://www.ualberta.ca/HOPE>

Article submitted by and printed with permission from Sophia's Garden www.sophiasgarden.org]]> General http://parentresourceguide.org/guide/index.php?itemid=55 Wed, 22 Mar 2006 09:08:00 -0600 http://parentresourceguide.org/guide/index.php?itemid=65 "With the stress from our child's diagnosis, our marriage is suffering. There is so much pressure on both of us, I am afraid the whole thing is tearing us apart. Is this normal?"Parents of children with special needs (such as health, emotional, or behavioral conditions) often experience a complex array of feelings, including sadness, despair, uncertainty, anger, and loss. Leaving behind all they had previously known, families are faced with a new perception of daily life and asked to adapt to new and challenging responsibilities. In the first several months following diagnosis, the family's focus centers on the child and his or her schedule for treatment, doctor's visits, and life style adjustments. While the parents endure this necessary yet challenging phase, their own needs often fall by the wayside.

Juggling the Marriage, Parenting, and a Child’s Special Needs

Mothers and fathers play an important role as parents but they also play an equally important role as spouses to one another. Given the significant stressors that families face, it is not unreasonable to expect their marital satisfaction to be impacted during this time. The ways in which each spouse reacts to and copes with the stress of their child's illness has a dramatic influence on their relationship. Each partner deals with powerful feelings and responsibilities in their own individual way. Often times, this is the first time that parents see how their partner copes with tremendous disappointment and loss. Some coping styles are complementary while others contrast. One partner may be very expressive about how they are feeling, while the other may need space and time to sort through their feelings. It is important to recognize that all parents cope differently.

How the Expectations of Others Influence Parents’ Coping

Societal expectations influence how parents “should” respond further reinforcing the demands specific to each partner. Many mothers feel like they need to do “everything.” Mothers often feel pressure to continue to meet the needs of their husbands, household obligations, and other siblings. Unfortunately, they often leave behind their own needs and places of employment.
Fathers commonly state that there is an increased need to continue to provide for their families while under duress and to fight the stigma against being weak, sad, or tearful. Rather, they should be brave, strong, and in control. In trying to live up to the expectations of others, some fathers let go of their need for expression, connection, and time with their partner and family.
Over time the pressure to fulfill these demands becomes too great. Parents are bombarded with financial, emotional, and physical burdens. They are confronted with social isolation, communication breakdown, sibling resentment, conflict, role reversal, and a loss of intimacy.

The Benefits of a “Secure Attachment”

When both partners are hurting, it is difficult for them to be supportive of one another. Spouses become convenient targets for each other's anger and frustration. Stress and the threat of loss can intensify our need for love, affection, and reassurance and change our expectations of how our partners should behave. These changes highlight any potential insecurities or difficulties already existent within the relationship. Secure attachment, or the sense that one can count on their loved one, has been linked to resilience or the ability to deal with stress effectively. This “secure attachment” is a buffer against ongoing stress and the negative effects that stress might have on their relationship.

Couples Facing Adversity: What to Do?

In the greatest race of their life, couples often forget which team they are on and turn against one another. In the face of such adversity we often ask what options couples are left with. Is it possible for couples to advocate for the needs of their child and at the same time the needs of their marriage as well?

Communication Is Key

Couples can maintain their relationship by using communication methods that work for them such as the following:
• Spouses need to identify one another's needs and means of expression.
• Setting aside time each day to touch base with one another will prevent communication breakdowns and the build-up of resentment.
• Couples need to practice active listening. This enables each partner to feel truly heard by the other and to promote a genuine sharing of their experience.
• For couples that find active listening challenging, the creation of a daily sharing notebook is passed back and forth to maintain connection and enhance communication.
• The sharing of emotions such as anger, fear, and hope foster attachment and intimacy.
Time Together as a Couple
Couples need to create opportunities or activities including:
• Scheduling a date night every week. Although this seems difficult, many couples find it enhances their relationship. They can make this a reality by finding a friend or a family member that they trust to baby-sit for them.
• Selecting one activity that you always do alone together or a time of day that you always spend together. It is not important what you choose to do, but rather, that you make it a regular priority to do something together as a couple.
When couples spend positive time alone together they can begin to engage in and respond to one another's needs. These positive interactions promote open communication, the ability to empathize, and hear other's perspectives in a way that builds trust, intimacy, and security.

Seeking Help

It is not uncommon for couples to need some help from professionals during this time. Communication skills and the art of compromise are often looked upon lightly. However, in the midst of a crisis, it can be quite difficult to master these tasks. Parents may choose to pursue short-term couples counseling to enhance communication practices, work through differences, or repair old wounds that have been brought to the surface in light of the recent crisis. The tools obtained in counseling will not only benefit the family in the short-term but will carry them through the longevity of their marriage.

Conclusion

Living successfully with a child with special needs requires good planning, effective coping strategies, and a lot of love. Parents are confronted with a challenge they are not prepared for and are asked to relinquish control of their previous life. They take on a host of new roles including medical experts, advocates, and insurance warriors. In doing so, their own needs often get neglected and their marriages go unnoticed. Despite the needs of their child, parents must find a way to support one another and meet their own needs as well. In doing so, they will not only help themselves but their child as well.

Article contributed by Stacy Bergman, MA, MSW, LCSW, a pediatric clinical social worker at the Pediatric Neuroscience Institute and Comprehensive Epilepsy Center at Hackensack University Medical Center.

www.childrenshospice.org]]> General http://parentresourceguide.org/guide/index.php?itemid=65 Mon, 13 Mar 2006 17:01:00 -0600 http://parentresourceguide.org/guide/index.php?itemid=29 medical terminology "Most of the time, I don’t understand what the doctors are talking about. They talk so fast and use so many words and phrases that I don’t know the meaning of ; how am I supposed to make sense of all of this if we are not speaking the same language?”HISTORY AND PHYSICAL (H+P):

This is the official written documentation and record of your child’s medical history. It includes your child’s birth information, any childhood illnesses, immunizations, and a history of any symptoms that your child has told you about or has exhibited. Your child’s medical history will also include the both sides of the family’s medical history.

Remember that there may be different types of doctors involved in your child’s care and this may get confusing. Therefore you may be asked for your child’s medical history several times by doctors and nurses.

Family Medical History is important information to have regarding whether someone in your family has had one of the following “kinds” of disease:

Genetic diseases – genes and cells that did not grow normally.

Infectious diseases – infected “bug or agent” that gets into the body causing disease.

Congenital abnormalities - born with something not normal.

HISTORY AND PHYSICAL INCLUDES:

Social history—people or situations that affect the way people feel or behave.

Symptoms—any change in the body or its functions that may point to having illness or disease.

Conditions—a state of being, as in being whole, fit and/or abnormal.

Be sure you write your child’s history and physical information down and take a copy of it with you to every appointment.

CLICK HERE TO DOWNLOAD A HELPFUL WORKSHEET THAT YOU CAN FILL OUT AND KEEP WITH YOU FOR DOCTORS TO REVIEW. THIS WAY YOU WON’T HAVE TO REPEAT IT ALL EVERY TIME.

The Physical part of the History and Physical:

The physical part of the H+P is a record of the physical exam—from head to toe—with emphasis on different areas depending on who is doing the exam.

An example would be that your child needs to see the neurologist and the ophthalmologist

Neurologist —will focus on the function of the nervous system—brain and spinal cord—how you move, do you feel hot and cold, pain and movement of various parts of the body.

Ophthalmologist —will focus on vision—eyesight-- and an examination of the eyes and eye movements—do both eyes move together or are they “crossed” or does one not move at all or only in certain directions.

Below you will find a list of definitions of the different types of doctors, branches of medicine, people of medicine, general medical words and terms, laboratory tests and finally x-rays.

Please email us if you have questions or need additional information regarding your child’s illness.

TYPES OF DOCTORS:

Medical students – people who are studying to be doctors.

Intern – doctors who are in their first year of formal clinical training with patients. They have graduated medical school and have received their “MD” (medical degree).

Residents—doctors who have finished at least initial stage of clinical training (medical school and internship) and beginning more specialized training and responsibility for diagnosis and care of patients and their treatment

Fellows— doctors on their way to becoming formal faculty of medical school as a particular type of Specialist.

Primary Care Physician (PCP) - doctor that has broad range of care for preventive & curative treatments.

Specialty Care Physician - doctor that has specialized training in a particular field of care.

Sub-specialists - doctor that requires extra training in a particular field of care.

Pediatrician - doctor specializing in children.

Attending Physician – formal faculty member/doctor who is responsible for supervising, teaching, training hospital staff such as interns, residents, fellows and medical students. They are the ‘doctor in charge’.

Article contributed by Dr. Michelle Simon, MD, PhD
Pediatric Group of Watsonville, CA and Fellow, American Academy of Pediatrics
for Children's Hospice & Palliative Care Coalition www.ChildrensHospice.Org

]]> General http://parentresourceguide.org/guide/index.php?itemid=29 Mon, 6 Mar 2006 09:05:38 -0600 http://parentresourceguide.org/guide/index.php?itemid=28 “I find myself doubting and questioning my beliefs and that is a very scary thing to be going through right now when I really need something to hold on to.”What sets us apart from other living creatures is that we have a body, mind and spirit. When we are sick, all three aspects of who we are need care and attention. When you have a child diagnosed with a serious illness, your spirit is wounded and shocked by the news, your body has a reaction and your heart and mind spins. Your views on life and living are seriously challenged, if not shattered, at least for now. After receiving news of a serious diagnosis, people often experience post traumatic stress disorder and few would argue that the moment is not traumatic. The reactions are described as quite visceral, distressing and visual. Nothing magically fixes any of this, nor is there any word or gesture, medicine or treatment that makes the wounded spirit suddenly heal.

Most people have some kind of belief system; a way of looking at their lives, the meaning of their own existence, and a connection to something outside of themselves or a higher power. This view or connection will become a lifeline for many parents and children as they engage in their most challenging life circumstance. The very questions first asked are often spiritual ones. Why is this happening to my child? Why now? What does anyone do to deserve this? Where is God right now? How could God do this?”

These feelings are surely a cause for suffering and spiritual suffering for some. Relieving this kind of pain requires thoughtful quiet reflection, time alone or intimate conversations with family, a spiritual advisor or chaplain, and even yourself. You can start by asking yourself some of these questions.

• What has comforted you in past hurts or difficulties?
• How have you relieved heart and soul pain at other times of difficulty and deep distress?
• What can you do to restore your hope, resiliency and outlook that will serve you as you confront your child’s illness and begin the process of getting through it?

You may have a new life view that is the result of having lost (even temporarily) sources of meaning, hope, peace, comfort, strength and connections to life. Beyond words and definitions, how do you find peace in your heart with what has come into your life? Can you search for and create some way to find meaning in this trauma for you, your child and your family in ways that support healing, wellness and recovery cure?

Thinking about what spirituality is may help you find strength from within and from others.

Spirituality has been defined as a dynamic, living process that:
• Reflects and expresses human spirit as well as an attachment to values of spirit;
• Incorporates a sense of hope, self-worth, meaning, purpose and interconnectedness with others;
• Incorporates a sense of unconditional love, acceptance, forgiveness, presence of relationship and trust;
• Can be experienced as a connection with a higher power/being, nature and others and can feel they are living with a sense of freedom and destiny.

Spirituality has meaning for both individuality and communion, community of others, of needing both separation and being with others at times.

Religion is a more formal way of connecting to ones belief system, through a more organized group, worship and structure. For many, this brings an enormous comfort and source of support through ritual, sacred writings, community, tradition and familiarity. To others, it has no little or no role and may even be contradictory to what they value.

If it is important to you, now is the time to consider how faith may also play a role in your life, your loved ones or your children. It may be interpreted and valued uniquely by each of you. If religion has played a role in your life, even in the past, there may be a treasure of help that can be renewed or rekindled.

Your child’s care team will have a chaplain that can assist you in making a new connection, bridging the gap from a past one, helping to moderate a conversation that will yield some needed peace and comfort to you and your child as well during this time. Belief systems often have ways of identifying hope, sources of hope or helpful ways to look at situations to claim hope for your child.

Regardless of what your belief system is, you deserve to have all the support, respect and guidance available in your setting to strengthen your resolve to find hope, strength, courage and comfort. It is a basic right that you as well as your child will be cared for in a dignified manner that is indeed respectful of your spirituality, the meaning you find in this experience and how you see it through that belief system.

Despite your child’s diagnosis , there may well be moments of extraordinary splendor and love, joy and celebration that are beyond your words. This is the spiritual part of your lives. The deep fears and darkness you may feel now, may be lifted to some degree by seeking and embracing the insight and comfort your beliefs can offer. Hold on to them and allow them to feed you in ways you need for this journey and transformational period of life. You are not alone.

Article contributed by Liz Sumner RN, BSN
Palliative Care Coordinator
The Elizabeth Hospice
lhsumner@elizabethhospice.org

Children's Hospice & Palliative Care Coalition www.ChildrensHospice.Org
]]> General http://parentresourceguide.org/guide/index.php?itemid=28 Mon, 6 Mar 2006 08:37:56 -0600 http://parentresourceguide.org/guide/index.php?itemid=27 "We’re all finding it hard to stay strong given the obstacles we’re facing and the way all of our lives have changed since our child’s illness was diagnosed.”The fight of your life is now in front of you. The enemy or obstacle is a medical illness that has changed the fabric of your life and your child’s life. Now the challenge is how to gather all of your forces: personal, physical, spiritual, financial, emotional, social and creative. Try to focus them on conquering and overcoming this condition and on surviving despite what you face right now.

Your deepest hopes and desires are to eliminate the illness completely and absolutely from your child’s body and soul and your lives. This is no easy task. You must thoughtfully and intentionally gather all your resources to make the very best plan and the most informed decisions. You must pursue the best medical team available to you so that your child has the best chance for recovery and restoring as much as humanly possible of their former life.

No matter what, the outcome will leave you changed. The territory is unknown and indeed frightening. You each will find yourselves in situations you never dreamed of. But you will do it. Though you would never choose this, you can lean on parts of your self that you never knew existed to get you can get through it. You need to believe with all your heart that you can and will do the very best for your child.

This is a time to try to consciously surround your family with people, resources and materials that are hopeful, but realistic, that will energize and push you forward. Find people who can add to and be a catalyst for your strength, which can rejuvenate you when you need it and restore your hope when it wears thin. Seek out others who are an inspiration, a source of personal and spiritual strength that you can add to your success team. It is possible to fight the disease in a way that does not result in the unnecessary loss of friends, family, medical advisors, alienation from your vital supports and mentors.

Treatment options
Depending on your child’s condition, there may be several treatment options available. You and your medical team will discuss which treatment priorities and options will make the most impact on your child’s illness right now, given the expected outcome of the treatments or therapies. There may be some that are appropriate now and others for sometime down the road if needed. Staying informed about the benefits and burden or physical implications certain treatments will have on your child will enable you to be more at peace with your decisions. The response or results anticipated in your child’s unique situation will influence your options. There may be good rationale to initiate a certain treatment or therapy, but it will need to be evaluated depending on how your child responds, the severity of side effects, and how how much it impacts their overall wellbeing overall. You can decide together what the balance needs to be.

Supporting each other as a family
Fighting the good fight can also have devastating effects on a marriage, on other children in the family, on work efficiency, financial situations, etc. Seek and accept the help and guidance of the counseling professionals on your child’s care team to support all of you as you adapt to the new demands in your lives. No matter what the outlook is for your child at this point, you will experience grief in letting go of what was just normal life until now, and having to make such huge decisions in the midst of new emotions, sadness, fear and worry. It is important to understand how normal your response to this jolt to your reality is so that you can see it for what it is and get the comfort and support you need to get through it day by day. All of your lives have changed and parts of your previous lives have been lost. You may search desperately to reclaim what you had and grieve for the normal life you had before your child’s illness. Sometimes understanding what you’re feeling and naming it can make it less scary and overwhelming.

Consideration and planning at this phase of the illness can make a long term impact on how your family will survives it and how each of you can find ways to thrive and continue.

Here are some ideas for supporting each other:

• Be flexible with each other.
• Strive for attitudes of patience and forgiveness.
• Family conversations at this stage and throughout the illness experience will help you all adapt through a changing landscape of ups and downs.
• Check in regularly with each other.
• Plan a survival strategy for each of you; honor and respect the way in which each of you cope.
• There is suffering enough dealing with all the worries and sickness. Do everything you can to minimize the individual suffering along the way to preserve your family.
• The “Fragile Universe of Family” can be maintained and well preserved with thoughtful attention to the needs of children, parents, spouses, grandparents, etc.
• Rest, escape, humor and tending to your own physical, emotional and spiritual needs over time will build strength into your family, bringing consolation in tough times and joy in good times.

Family is a living thing, changing daily but at the same time providing a source of steadiness and solid ground in stormy times, and a place of refuge, comfort and love, no matter where you are. Together or apart, you will need each other. Each of you brings a special gift to the circumstances and can be powerful medicine for someone else at the right time. There is no family like yours and it is worth protecting, fighting for and preserving.

Hope is a powerful and necessary ingredient in fighting your child’s illness. Hope comes in many forms: information on test results, a message from a friend who cares, a prayer that speaks to your heart, the sun shining after a difficult day, a good night’s sleep, a touch or caress, and a smile from your child or family member.

Everyone needs hope
When your child has a serious condition, the need is intensely magnified. Some parents describe hope as a physical energy that helps them to keep putting one foot in front of the other, day after day, forging through the difficult and tiring times. It mobilizes something deep inside us that things can be okay.

You have more within you to help you do this than you may possibly believe today. Believe in yourself and your child and keep hope alive.

Article contributed by Liz Sumner RN, BSN
Palliative Care Coordinator
The Elizabeth Hospice
lhsumner@elizabethhospice.org

Children's Hospice & Palliative Care Coalition www.ChildrensHospice.Org</i>


]]> General http://parentresourceguide.org/guide/index.php?itemid=27 Mon, 6 Mar 2006 08:33:12 -0600 http://parentresourceguide.org/guide/index.php?itemid=26 Your Child's Pain“My child just started treatment. I am worried about all of the painful tests and treatments he will have to endure and I want to know what I can do to help him.”No matter how old your child is, when they feel pain, you feel it too. Unfortunately, there will be episodes of discomfort and pain from your child’s illness and treatment. That is why it is important to understand how to identify pain in your child, what you can do and what care providers care providers can do to help relieve the pain.

There are resources and information available that will help you keep your child comfortable. There are also guidelines to help you observe and “translate” the signs of pain in your child and communicate this information to the health care team.

You will often be the eyes, ears and hands of your child’s physician, both at home and at the hospital. No one knows your child as well as you do. You are the one who is most familiar with their subtle changes, expressions of distress, and signs of discomfort and pain. Therefore, you are likely to be the first one to recognize pain in your child and activate the proper relief.

In order for the doctors to better understand your child’s condition, they may need to conduct some tests that are uncomfortable or painful.

The following familiar comfort measures can be very effective in reassuring and relaxing your child during these procedures:

• Be sure to ask for something to prevent or decrease pain during painful procedures. Don’t be afraid to insist. You are your child’s pain advocate.
• Offer your ideas about what caregivers could do to maintain consistency in your absence and to make your child comfortable.
• When your child is in pain, try to distract them from the discomfort. One way is to help your child think of a peaceful or special place and imagine it with several senses.
• Bring stories and books from home to distract and redirect your child’s thoughts.
• Allow your child to have a comfort object, such as a bear, doll, animal, or headset with music while they are getting tests, procedures, etc. One mom left her (worn and smelly) tee shirt with her child so he could cuddle it and smell her when she couldn’t be there.
• Use your voice as a soothing mechanism. Record it for them to listen to on a headset when you can’t be there. You could read, say your goodnight, or reminisce.
• Maintain a positive outlook for your child. Offer positive reinforcement and encouragement despite the hurdles and challenges you are experiencing.
• Try tapes and CDs with relaxing nature sounds or music..
• Wash cloths somehow have “magical power” to make things feel better. Keep a special wash cloth handy to gently press on a sore area or your child’s forehead and eyes.
• Gently massage, rub, or stroke your child to soothe and distract them.
• Hold your child’s hand.
• Reassure your child that the pain will over soon.
• Help your child to be brave by not expressing fear yourself.

Your presence is the best way to reduce your child’s pain and anxiety during procedures or tests. Prepare your child by assuring them that you will be there during the entire procedure. Work together to create ways to make your child feel better, such as rituals, songs, holding each other, maintaining eye contact, etc. Explain to your child what is going to happen during the test. If you’re not sure, ask your doctor before the procedure begins so there are no surprises. Knowledge is empowering and it will help you overcome the anxiety you may feel.

What you need to know about pain management
Information can bring a sense of control when so much change is happening in your lives. If your child is in pain, insist on a consult with a pain specialist. Ask about the cause of your child’s pain, how you can detect it, and what you can do to help. Ask about your options for medication, including both over the counter and prescription drugs, and when and how often you can give it.

It is very important to ask your doctor how you will know when a stronger pain medication is needed. It is also a good idea to have something a bit stronger than what you currently need on hand should the need for it arise late at night or on the weekend. Remember that you are entitled to have the proper “ammunition” for mild, moderate or even severe pain when your child’s condition warrants it.

Good pain management is based on believing (and then acting upon) what the patient says is pain. Most hospitals will use a pain rating scale to evaluate the degree or intensity of pain. There are scales available for young children, school-age children and teenagers. Babies and non-verbal children “tell” us by their physical changes, cries and vital signs, etc. For example, one scale is rated from zero to ten with zero meaning “no pain” and 10 meaning “the worst pain”. The pain number rating helps the nurse and physician to determine the best medication and develop a care plan for managing the pain, now and ongoing.

Ask your health care professional which tool they use to evaluate pain so that you can become familiar with it. Understanding the tool can give you a sense of control, help your child communicate how they are feeling, empower you to report pain to your health care team, and choose the appropriate pain medications and comfort measures. Pain should be re-assessed frequently to ensure that the medications and comfort measures are sufficient.

Always remember that pain is what your child says it is, and we need to believe it as fact. Children want to be brave for you and for themselves but they do not need to suffer needlessly. Good pain relief will allow them to put their full energy into healing, getting well and feeling better.

Types of medication
Over the counter drugs such as acetaminophen (Advil) or ibuprofen (Tylenol) are used for general discomfort and mild pain. Make sure that you ask your physician about the appropriate dosage for your child’s unique condition and needs.

Moderate pain is pain that affects a child’s ability to enjoy activities and rest well. Moderate pain may also cause your child to be irritable or cranky. This type of pain may persist despite your comfort measures and current medicine. Some options that might be prescribed are codeine, oxycodone, or even morphine.

More severe and ongoing pain is often treated safely with morphine, hydrocodone and hydromorphone, etc. Your physician will discuss the need to increase the strength of pain medications as your child’s needs change.

It is important to understand that your child’s pain can be managed well with the available medicines. Morphine and similar drugs, given in amounts based on your child’s weight and condition, can be carefully monitored to determine the appropriate level for comfort while maintaining your child’s ability to function normally. Be sure you understand how often to give the medications. Is there a schedule or isthe medication to be to given on an “as needed” basis (when your child is hurting and you cannot relieve the pain with comfort measures alone)?

Keeping your child comfortable
The more frequently you give a medication, the more relief your child will feel. Medication given on an “as needed” basis, or “PRN”, means that you give the medication when a child tells you he is in pain. This works well when your child has only occasional pain and does not need medication on a daily basis. However, if your child has daily pain, even if it is sporadic, he may fluctuate between pain and relief throughout the day without consistent medication. If this is the case, a small regular dose should be given at scheduled times to best control pain and prevent the escalations that can be frightening or worrisome for both you and your child.

Getting through treatment and therapies can be challenging but keeping your child comfortable is both a right and a responsibility. It will help your child get stronger if their energy is devoted towards recovery rather than exhausted from pain.

Article contributed by Liz Sumner RN, BSN
Palliative Care Coordinator
The Elizabeth Hospice
lhsumner@elizabethhospice.org

Children's Hospice & Palliative Care Coalition www.ChildrensHospice.Org</i>



]]> General http://parentresourceguide.org/guide/index.php?itemid=26 Mon, 6 Mar 2006 08:21:02 -0600 http://parentresourceguide.org/guide/index.php?itemid=25 "Everybody wants to help. I know it sounds crazy but sometimes it’s overwhelming and I don’t feel comfortable asking for what I really do need.”Most of us aren’t very good at asking for help when we need it. We’re used to being able to take care of our families on our own. And though our friends and family may want to help, they probably don’t know how to offer it or even what would be helpful to you right now.

This is a time when you need to learn to accept the help you need. In doing so, you give others the chance to do something good for you and that makes them feel better at the same time. Being on the receiving end is a difficult thing for many. It is one of the gifts you do receive in this time of trials and worries and a gift you give to others.

There are probably specific things you need to keep your family afloat during this strenuous time. You may be dealing with dietary restrictions, changes you need to make at your home and new routines you need to follow. You might want to consider giving a list of the things that would be helpful to you to a friend or someone at school who is good at organizing and can be the contact person for connecting your needs with people who want to help.

In the hopes of getting you really practical and useful help from those well intentioned and concerned friends, family, school community, faith community, etc. the list below is intended to make it easier to connect you with people that can help.

Here's a letter you can hand to friends who want to help but don't know how:
Dear Friends,
This is a very demanding and emotional time for all of us. We appreciate your interest and your desire to be here with us. We all know it is hard to ask for help and to know what to do to help. The truth is, we do in fact need your help in some areas. To make it easier for us both, we have some ideas that you can assist us with. This is just to be helpful and there is no pressure or obligation, we just wanted to make it easier for all of us.

Things that would be very helpful:
Household ideas
• Mow the lawn when we’re away for several days or circumstances prevent us from doing it ourselves.
• Arrange for transportation for our other children to get to/from school, sports and other activities. This can be shared among a few people; we can provide schedules, directions, etc.
• Sponsor a housecleaning session.
• Pick up meds at pharmacy or clinic/hospital.
• Shop for groceries with a list.
• Walk the dog regularly.
• Have our other children over to play or sleepover occasionally.
• Bring news from school, notes, cards, journal from the kids.
• Keep friends updated for us and express our appreciation for their concern. This reduces the number of calls we need to make.
• Please call before visiting. We may be resting or having a rough day/night. We want to make sure we can honor your time too.
• Run errands we may need help with: will provide the list
• Come sit with my child so I can take a walk, go to church, have an occasional break with someone he/ she feels comfortable with
• Laundry! A few less loads would be heaven

FOOD
• The following food items are always welcom: bag lunches for when we are “on the go” at the clinic or hospital, etc., drinks and non perishable food and snacks
• gift cards for the grocery store or takeout food.
• Drop off take out dinners when we get home after treatments/long days at the clinic or appointments.
• Coordinate meals for a few days or weekly that can be frozen and reheated or simply prepped to eat. Fresh veggies/ fruit/ drinks are always welcome (we’ll be sure to let you know of any special dietary needs).
• Drop off snacks and drinks for at home when we have many people in and out of the house.

We are deeply grateful for your care and concern for our family and anything you do will be a big help and a relief. Thank you for holding us all in your hearts and thoughts. It is good to know we are not alone.
]]> General http://parentresourceguide.org/guide/index.php?itemid=25 Mon, 6 Mar 2006 08:16:26 -0600 http://parentresourceguide.org/guide/index.php?itemid=24 My Child Won't Eat!“My child just started treatment and she never feels like eating anything. I know nutrition is really important now and I feel frustrated and helpless when I can’t get her to eat.”It can be challenging to get your child to eat well when they are dealing with a new diagnosis, medication changes, treatments, testing and stress. Treatments, medications and sometimes the illness itself can change how foods taste and smell, and how they are digested and tolerated. Your child was probably feeling ill and not eating normally before her disease was diagnosed and probably feels really yucky now that the treatment has started. Feeling lousy combined with worrying about the diagnosis can have a negative effect on your child’s appetite.

It takes quite a toll on a child, no matter the age, when something totally disrupts their world. Their minds and hearts are heavy with concerns for themselves and their future. They don’t know what to expect. In particular, young children do not have the language to describe these deep emotions, so they get frustrated and angry and cannot explain what they are angry about. In addition, children pick up on our frustration. They have an incredible ability to read how we are feeling and if something is going on, they sense it. The stress and effort it takes to go to and from the clinic, hospital and multiple appointments is exhausting. Combine all of this with the physical toll the disease is taking, and it is no wonder they don’t want to eat.

Because maintaining weight and nutrition can contribute to a better response to the treatments, good eating habits are an important part of aggressively fighting and treating disease. Ask your child’s doctor to recommend a diet that will work in tandem with the treatment and which foods to avoid. Post the recommendations on your refrigerator and highlight any of the foods from the list that your child normally likes and focus on those.

Don’t put too much pressure on yourself or your child. This is not a time to try to get your child to eat foods they normally don’t like. Sometimes, you’ll be lucky if they eat even one bite of their favorite snack. This is normal, but make sure you let your child’s doctor knows what she is eating and what your concerns are. Your medical team may want to order supplements, vitamins or even IV fluids or medication if there is a more dramatic eating problem to ensure your child is getting what they need.

Here are some suggestions that have helped some of us when our child refused to eat during treatment:

• Try offering smaller, more frequent meals.
• Keep a small cooler or lunchbox with you. Fill it with water, juice packages, nutritional snacks and microwavable foods your child likes to eat. You don’t want to miss an opportunity when she might just decide, after three days of eating almost nothing, that she wants to eat—NOW!)
• Prepare or buy “lunches to go” for clinic days, long treatments and lots of traveling days. Don’t forget about yourself! It is important for you to make time for meals and good snacks too!
• Talk to the hospital nutritionist. At this phase there may be dietary or nutrition consultation available to guide you in adding or deleting foods and providing ideas for meeting the nutritional needs your child’s condition and activities demand. Ask if any of your child’s medication might be impacting appetite, causing nausea or changing the taste of certain foods. Sometimes even the disease process or treatments and therapies can change how things taste.
• Ask your doctor about medications that might help. Sometimes a physician might suggest an anti nausea or similar medication to help reduce the symptoms and bring relief. It is important to try something new more than once to see if it might help.
• When your friends and family ask how they can help, ask them to prepare simple meals and snacks that your child likes. This is one way they can help to sustain you and your family while you focus on the treatment needs of your child. Ask them to bring a favorite food to the hospital as a surprise for your child.

When more is needed
If your child continues to refuse food for a prolonged period, your child’s doctor may recommend intervention. They may ask you to consider a feeding tube, which may seem scary and invasive. However, you will breathe a sigh of relief knowing that your child is getting the nutrition she needs. There are three types of intervention.

• The NG Tube (nasogastric tube) is used on a temporary basis to give liquids and medication. It goes into the nostril, down the throat into the stomach. Once it is passed, it is not so bothersome, but does require some care of the nose and skin from the tape that is used.
• The G Tube (gastrostomy tube) is surgically placed directly through the abdomen into the stomach. It requires daily care and attention to the skin but is a more long term way of maintaining control over nutritional intake, ensuring many kinds of medication can be given.
• TPN (total parenteral nutrition) is a combination of minerals, vitamins and nutritional ingredients that is given through an IV. It is complete nutrition when there are more intense needs to maintain proper balance of all aspects of nutrition and blood levels.

Beyond loss or change in appetite, your child may experience nausea or vomiting. There are medications and other ways to bring relief and comfort to your child. Discuss with your care team what foods and drinks are routine now and what suggestions they might have given how your child is feeling. Some changes will be easy; some may be difficult. For example, your child may not be able to tolerate one or more of their favorite foods for a time.

Eating is a natural, nurturing part of our existence. It is natural for a parent to feed their child and cuts to the core of our fears when our child is not eating. We hope these suggestions help you remain calm, get the support you need and know that you are not alone in this struggle.

If you have a suggestion or story to share which might help some of us going through this, please share it here.

(LINK)


Article contributed by Liz Sumner RN, BSN
Palliative Care Coordinator
The Elizabeth Hospice
lhsumner@elizabethhospice.org

Children's Hospice & Palliative Care Coalition www.ChildrensHospice.Org</a>

]]> General http://parentresourceguide.org/guide/index.php?itemid=24 Mon, 6 Mar 2006 08:11:54 -0600