Shwachman-Diamond America is pleased to announce that we have a new booklet available. The title is Management of the Hematologic Abnormalities of Shwachman-Diamond Syndrome by Richard Harris, M.D. This booklet is excellent for parents, pediatricians and specialists. If you would like a copy (or copies) of the booklet sent to you, please send your mailing address to shwachmandiamondamerica@embarqmail.com These booklets are FREE to anyone who requests them. Visit the webstie above to request your free booklet.
The booklet includes sections on the following topics:
Description
History
Diagnosis
Management of Neutropenia
Management of Fevers in SDS patients
Antibiotic coverage prior to Dental Work or Surgical Procedures
Management of other Cytopenias
Management of Anemia during Surgical Procedures
Management of MDS
Management of Leukemia
Bone Marrow Transplantation for SDS
And also includes the following:
K-M Survival Plots
Important Contacts
References
Glossary
All of us at Shwachman-Diamond America would like to take this opportunity to thank Dr. Harris for all of his hard work and dedication to this project. Thank you, Dr. Harris, from the bottom of our hearts! Your dedication to all of our SDS and SDS-like children is appreciated more than you will ever know.
For information on Shwachman-Diamond Syndrome check out Shwachman-Diamond America
Showing posts with label Helpful Books. Show all posts
Showing posts with label Helpful Books. Show all posts
Thursday, June 19, 2008
Saturday, February 16, 2008
Bone Marrow Biopsy Day
Bone Marrow Biopsy Day
A book for children who are facing a bone marrow biopsy. The idea for this book came from a scrapbook Pattie made for her two sons with Shwachman-Diamond Syndrome who have had over fifteen bone marrow biopsies each. Her youngest son, Joseph, always wanted to know what happened to him once he fell asleep in the OR. Once the first book was made for her children, a Child Life Specialist suggested that the book could help other families dealing with similar issues. A few changes later and this book was a reality. This edition includes a section for parents on helping children cope with medical procedures and other helpful topics for families dealing with chronic illness
A book for children who are facing a bone marrow biopsy. The idea for this book came from a scrapbook Pattie made for her two sons with Shwachman-Diamond Syndrome who have had over fifteen bone marrow biopsies each. Her youngest son, Joseph, always wanted to know what happened to him once he fell asleep in the OR. Once the first book was made for her children, a Child Life Specialist suggested that the book could help other families dealing with similar issues. A few changes later and this book was a reality. This edition includes a section for parents on helping children cope with medical procedures and other helpful topics for families dealing with chronic illness
We Take Enzymes
We Take Enzymes
We Take Enzymes was first written when Pattie’s sons were in pre-school and wondering why they had to take enzymes. In the first construction paper draft, Sean and Joseph helped with the text and drew the pictures in crayon. This book was read every day and helped them to understand the need for enzymes. This book educates young readers on the importance of taking enzymes and how these enzymes aid digestion. Told from Sean and Joseph’s perspective, this book will engage young readers with Shwachman-Diamond Syndrome and Cystic Fibrosis. The book also focuses on the role good nutrition and exercise play in growing and keeping one healthy. This book may be an encouragement to young readers who have special needs because it shows children with special needs leading full, exciting and rewarding lives.
We Take Enzymes was first written when Pattie’s sons were in pre-school and wondering why they had to take enzymes. In the first construction paper draft, Sean and Joseph helped with the text and drew the pictures in crayon. This book was read every day and helped them to understand the need for enzymes. This book educates young readers on the importance of taking enzymes and how these enzymes aid digestion. Told from Sean and Joseph’s perspective, this book will engage young readers with Shwachman-Diamond Syndrome and Cystic Fibrosis. The book also focuses on the role good nutrition and exercise play in growing and keeping one healthy. This book may be an encouragement to young readers who have special needs because it shows children with special needs leading full, exciting and rewarding lives.
Friday, February 15, 2008
Families Coping with Bone Marrow Failure Diseases
The Aplastic Anemia & MDS International Foundation, Inc has several great resources for families that have children with bone marrow diseases, such as Shwachman-Diamond Syndrome. Below is a summary of one booklet we found helpful for our own families. To order a free copy of this book, please visit the AA& MDS Foundation website.
Families Coping with Bone Marrow Failure Diseases: Aplastic Anemia, Myelodysplastic Syndromes and PNH -- This booklet goes into Reactions to illness, how to deal with reactions from others, changes to expect within the family, learning to cope…… also has sections on coping with hospital life and a section on helping children cope.
Families Coping with Bone Marrow Failure Diseases: Aplastic Anemia, Myelodysplastic Syndromes and PNH -- This booklet goes into Reactions to illness, how to deal with reactions from others, changes to expect within the family, learning to cope…… also has sections on coping with hospital life and a section on helping children cope.
Thursday, February 14, 2008
Teachers and School Nurses Guide to Bone Marrow Failure Disease
The Aplastic Anemia & MDS International Foundation, Inc has several great resources for families that have children with bone marrow diseases, such as Shwachman-Diamond Syndrome. Below is a summary of one booklet we found helpful for our own families. To order a free copy of this book, please visit the AA& MDS Foundation website.
Teachers & School Nurses Guide to Bone Marrow Failure Disease – This booklet is an excellent resource for school staff. It discusses bone marrow failure, what symptoms to look for in a child that has bone marrow disease and includes a section on supporting a child’s emotional needs along with the classmates. Divided in sections for nurses and teachers, this is an excellent resource for any school that has a child with bone marrow failure attending.
Teachers & School Nurses Guide to Bone Marrow Failure Disease – This booklet is an excellent resource for school staff. It discusses bone marrow failure, what symptoms to look for in a child that has bone marrow disease and includes a section on supporting a child’s emotional needs along with the classmates. Divided in sections for nurses and teachers, this is an excellent resource for any school that has a child with bone marrow failure attending.
Talking to a Child with Bone Marrow Disease
The Aplastic Anemia & MDS International Foundation, Inc has several great resources for families that have children with bone marrow diseases, such as Shwachman-Diamond Syndrome. Below is a summary of one booklet SDA found helpful for our own families. To order a free copy of this book, please visit the AA& MDS Foundation website.
Talking to a Child with Bone Marrow Disease – This is an excellent book created to be read aloud to a child of any age. It was written to encourage children with bone marrow diseases to ask questions and express their feelings. The illustrations are wonderful and the writing is excellent. It not only addresses having a bone marrow disease, but brings up topics that can help children learn positive coping skills in dealing with their disease. Topics include: What can I do when I am feeling bad?, What if I don’t want to talk? , Why do I get sick?, Why do I have to go to the hospital and Why do I need Medicine. It also touches on such topics as: Why is my family upset? And What do I tell my friends? There is a thoughtful section for children to fill out questions (fill in the blank) such as, I’m sad about____________, I need to speak up when __________________ and I love _______________ . The back part of the book includes a blank journal where the child can write about his or her experiences with bone marrow disease.
Talking to a Child with Bone Marrow Disease – This is an excellent book created to be read aloud to a child of any age. It was written to encourage children with bone marrow diseases to ask questions and express their feelings. The illustrations are wonderful and the writing is excellent. It not only addresses having a bone marrow disease, but brings up topics that can help children learn positive coping skills in dealing with their disease. Topics include: What can I do when I am feeling bad?, What if I don’t want to talk? , Why do I get sick?, Why do I have to go to the hospital and Why do I need Medicine. It also touches on such topics as: Why is my family upset? And What do I tell my friends? There is a thoughtful section for children to fill out questions (fill in the blank) such as, I’m sad about____________, I need to speak up when __________________ and I love _______________ . The back part of the book includes a blank journal where the child can write about his or her experiences with bone marrow disease.
Tuesday, February 12, 2008
Appetite Stimulants & Resources for Children who refuse to eat
Some children with Shwachman-Diamond Syndrome eat like there is no tomorrow and others barely eat at all. Some children will be put on appetite stimulants in hopes they can gain weight.
Periactin is an antihistamine that also helps with migraine headaches and increases appetite. Megace is a steroid that is used as an appetite stimulant. Below are links for more information on the two medications.
Megace Periactin
This is another topic we often discuss on the Shwachman-Diamond Syndrome Support List When my Sean was little, theywere considering a feeding tube, even though he was getting enough calories. Our GI at the time felt if we could stimulate his appetite, maybe eating moe would help. It was a very confusing time. If you have a child with Shwachman-Diamond Syndrome who refuses to eat, you might want to try a book written by Joel Macht, PhD titled Poor Eaters: Helping Children who Refuse to Eat I read this book many, many years ago and found it to be helpful. Something to keep in mind: take what you can use and forget about the rest. Dr. Macht works with children who are tube fed and he has a program to get them eating. The book is made up of case reports and what helped each child to eat. I found quite a few tips that we were able to use, but also found a lot in there that were not helpful for our situation.
Please remember, if you purchase books on-line, please use the iGive link on the top right-- items don;t cost you any more than they normally would, but a percentage of your purchase goes to Shwachman-Diamond America You can also use Goodsearch and shop through Goodsearch to raise money for Shwachman-Diamond America THANK YOU!
Periactin is an antihistamine that also helps with migraine headaches and increases appetite. Megace is a steroid that is used as an appetite stimulant. Below are links for more information on the two medications.
Megace Periactin
This is another topic we often discuss on the Shwachman-Diamond Syndrome Support List When my Sean was little, theywere considering a feeding tube, even though he was getting enough calories. Our GI at the time felt if we could stimulate his appetite, maybe eating moe would help. It was a very confusing time. If you have a child with Shwachman-Diamond Syndrome who refuses to eat, you might want to try a book written by Joel Macht, PhD titled Poor Eaters: Helping Children who Refuse to Eat I read this book many, many years ago and found it to be helpful. Something to keep in mind: take what you can use and forget about the rest. Dr. Macht works with children who are tube fed and he has a program to get them eating. The book is made up of case reports and what helped each child to eat. I found quite a few tips that we were able to use, but also found a lot in there that were not helpful for our situation.
Please remember, if you purchase books on-line, please use the iGive link on the top right-- items don;t cost you any more than they normally would, but a percentage of your purchase goes to Shwachman-Diamond America You can also use Goodsearch and shop through Goodsearch to raise money for Shwachman-Diamond America THANK YOU!
Saturday, February 9, 2008
Helping a Child Cope: Worry and Anxiety Books
The "What to do When You Worry too Much A kid's guide to overcoming anxiety" by Dawn Huebner, PhD is excellent for kids! It is a workbook for kids and they can draw pictures in certain places.
This is definitely something that helped Joseph. The other one I have, "What to do When You're Scared & Worried" by James J Crist PhD is geared toward (my opinion) older children . It looks like a great book, too! It has chapters for OCD and even one for Post-Traumatic Stress Disorder.
In the second book there are also chapters on Separation anxiety, Generalized Anxiety disorder, Panic Attacks and a chapter on what it is like to go to counseling. Chapters on coping skills to use at home and school...and lots more.
The first book is definitely geared toward the younger kids with the bigger text and places to color pictures.
Gotta put a plug in for iGive.com......If you order the books on-line through iGive.com at Barnes and Noble, SDA will get a % of the sale http://www.igive.com
This is definitely something that helped Joseph. The other one I have, "What to do When You're Scared & Worried" by James J Crist PhD is geared toward (my opinion) older children . It looks like a great book, too! It has chapters for OCD and even one for Post-Traumatic Stress Disorder.
In the second book there are also chapters on Separation anxiety, Generalized Anxiety disorder, Panic Attacks and a chapter on what it is like to go to counseling. Chapters on coping skills to use at home and school...and lots more.
The first book is definitely geared toward the younger kids with the bigger text and places to color pictures.
Gotta put a plug in for iGive.com......If you order the books on-line through iGive.com at Barnes and Noble, SDA will get a % of the sale http://www.igive.com
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