Search Results for: blog dealing with the diagnosis of your child

The Truth About Your Diet During Pregnancy

One of the assumptions I made about pregnancy prior to becoming pregnant is I’d have a diet-related Get out of Jail Free card.  I knew that there are certain foods it’s best to avoid, but I thought at least I’d have a free pass to eat, well, not quite as much as I wanted, but to feel a bit more guilt-free about evening ice cream binges. That turned out not to be the case at all.  First off, the whole “eating for two” thing isn’t true.  At most, you should eat for one and a quarter.  In addition to that, … Continue reading →

Allergies In Your Family Tree Are Nothing To Sneeze At

Sometimes, people like to joke about having “nuts” in their family tree. Family gatherings can be filled with humor and interesting memories if your aunts or uncles are a little batty or your cousins are somewhat eclectic. There is another type of “nut” that some people have in their family tree that is more problematic. Nut allergies have become increasingly common over the past decade or so, and allergies have been linked to heredity. Allergies to foods and environmental triggers are yet another reason why knowing your family’s health history is so important. Allergies occur when your immune system reacts … Continue reading →

Author Writes to Help Parents of Special Needs Children

Posted on by

If you are a parent struggling through the recent diagnosis of your child, you may be feeling completely alone. However, while you are most definitely angry, sad and scared, you are definitely not alone. Judy Winter proves that in her book Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations. As the mom to a boy with cerebral palsy, she knows what she’s talking about. Her own son Eric passed away at the age of 12, and she has dedicated her career to helping other children and their families live the best lives. This book offers a … Continue reading →

Facing Anger after Diagnosis

Of all of the emotions we go through after the diagnosis of our child, anger is perhaps the worst one. We can sometimes hold on to anger for too long and it begins to eat away at us, and the person we were before diagnosis. We can hold a grudge against a disease. We can scream and place blame on other people. These reactions get us nowhere. In the face of chronic illness, there isn’t anyone to blame. There isn’t anyone to yell at or hold a grudge against. Trying to do so won’t cure the disease, but will make … Continue reading →

Parenting Children with Special Needs is a Positive Experience

Posted on by

I’ve gone through the emotions of learning the diagnosis of my child. My daughter was just a few days old when we learned she has cystic fibrosis, an incurable, chronic condition that would leave her open to frequent lung infections and a shortened life span. I went from grief, to denial back to grief and anger and eventual acceptance. Today, nearly two years later, CF is no longer a stamp across her forehead, it is just a part of life for us. And the extra care and protection we have to give her has led to a strong bond. A … Continue reading →

Getting the Most from Your Pharmacy

Posted on by

Having a child with a special health need like cystic fibrosis means having a kitchen cabinet designated for prescriptions. It also means frequent trips to the pharmacy. Pharmacists make a lot of money off CF patients as their meds can cost upwards of $8000 a month. The problem is that most pharmacies don’t keep things like digestive enzymes in stock. So I spoke with the pharmacist at the pharmacy I had chosen for its convenient drive-thru window. I told him about Maggie and that we would be getting these medications for her from them for as long as we lived … Continue reading →

Five Things to Do When Your Child is Diagnosed with Down Syndrome

Posted on by

I recently read an essay by a woman who knew from the moment her newborn daughter was handed to her, that she had Down syndrome. She waited for someone else in the room to notice, and waited while the pediatrician looked her daughter over, and waited for the words to escape from the doctor’s mouth, knowing all the while, what wasn’t being said. She was scared and she wanted to reverse time to before her daughter was born. She wanted to run away with her toddler and husband and never look back. That is how it often feels at the … Continue reading →

Surviving My Cystic Fibrosis Child’s First Cold

Maggie, my 20 month old, got her first cold this week. Most people can’t believe she made it to almost age two without a cold. When people find out, they call us lucky. And luck probably played a small part in it, but so did hard work, careful consideration, following the doctor’s rules, and prayer. Maggie has cystic fibrosis and avoiding germs that cause respiratory problems is all a part of a day’s work. A runny nose can turn into a cough, which can turn into a lung infection, which can turn into a hospital stay with antibiotics and permanent … Continue reading →

Create an Accessible Playground in Your Town

Playgrounds are great fun for kids – the slide, the swings, and the bobbling horse. It is an adventure every time. For kids with physical limitations, however, the playground is an obstacle standing in the way of the good times the other kids are having and leaving them feeling left out. Communities across the country are finding the solution to this problem through accessible playgrounds. Accessible playgrounds are just what they are called, accessible. Wheelchairs, walkers, and crutches can no longer keep a kid from having fun and playing with the other kids at the park. If you would like … Continue reading →

Should You Enroll Your Child in a Clinical Trial?

Children with chronic or life-threatening conditions are often asked to participate in clinical trials and help find new ways of treating their specific condition. If your child’s doctor has asked you for permission to enroll your child in a clinical trial, here are some considerations and ideas to help you make the decision. What is a Clinical Trial? Clinical trials are how drugs and treatments are tested for both safety and efficacy. Without trials, many of the lifesaving medicines that are now readily available wouldn’t exist. During a clinical trial, some of the participants are given the drug being tested … Continue reading →