Ashley's son was diagnosed with Chiari malformation type 1, and she's here to share her experience with other parents.
Parenting Is a Journey
Parenting is a journey full of the highest mountains of joy and the deepest valleys of sorrow. No two paths look identical, which makes this topic one of the most diverse out there.
Generally speaking, though, when parents first welcome their little bundles of joy into their arms, they have lots of hopes and dreams for them. The pictures may be slightly different, but you will see themes that reflect a desire for excellence, intelligence, and productiveness. Parents want to see their baby grow to do great things.
Sometimes, that path to excellence is a bit more topsy-turvy than for others. What does one do when they suddenly notice that their child is having difficulties with their health? Health concerns can be as minor as frequent colds, but for some, they are much bigger. Such is the journey that I have been on with my oldest son.
Challenges for Parenting a Child With Chronic Illness
- Getting a Diagnosis
- Understanding the disease
- Finding the best medical care for your child
- Day to day challenges become more complicated
Getting a Diagnosis Can Take Time
Sometimes, it takes time to get a diagnosis for an illness. Doctors try to live by the mantra that "common things occur commonly." As a result, sometimes serious things can be overlooked in order to keep from over-testing a healthy child.
So when you as a parent have a concern that they are missing something, I would encourage you to not give up. You can always take your child back for another evaluation. Go as many times as you need to get the answers that you need. Don't be afraid to get a second opinion if your doctor won't listen to you.
When my son was born, he seemed as happy and healthy as any other baby except for a few details that seemed minor. My son had a difficult time sleeping, and he hated riding in the car. He was very sensitive to loud noises, and he also drooled excessively. I did not think these things meant that anything could be "wrong."
They seemed like they were just minor differences that made him unique, and boy did I LOVE him. He also had symptoms that indicated his head hurt, but I was never really sure of that until he grew older and could tell me.
When he began school, he had a very difficult time with his head hurting. Over the first three years, his headaches seemed to get worse and worse. By the second semester of second grade, he was frequently lying down at his desk instead of participating in activities.
I had taken him to his doctor, who shrugged off the headaches. Kids get headaches sometimes, I was told. I could journal them if I wanted, but she didn't want to treat him for migraines. So we didn't feel like there was anything that could be done.
That changed one day when I was sitting in church. He was getting a headache and started complaining that he couldn't move or feel his hands. When he placed them into mine, his fingers were twitching oddly. I took him to a different pediatrician the following morning, and we were referred to a neurologist right away. After he had his MRI, we finally had an answer to everything that had been plaguing him. He was diagnosed with Chiari malformation type 1.
Symptoms of Chiari Malformation
- Symptoms of Chiari Malformation | Weill Cornell Brain and Spine Center
Someone may have a Type I Chiari malformation for years without knowing it — Chiari often produces no symptoms until adolescence or early adulthood. The malformation is sometimes identified when a patient has an MRI scan for another reason, but it's
Chiari Malformation, a Herniated Brain: Educate Yourself on Your Child's Condition
It is essential to learn everything you can about your child's condition. Your little one is depending on you to get them the best care that is within your capabilities. This starts with understanding what is going on with their bodies.
Chiari malformation is diagnosed when a portion of your cerebellum, the cerebellar tonsils, is herniated through the foramen magnum and into your spinal column. It can be caused by a couple of different things. One of them is a genetic connective tissue disease called Ehlers-Danlos syndrome (EDS), and the other is a birth defect because of a skull base that is too narrow.
I do not yet know the cause for my son, but I hope to get him to see a genetic specialist soon to rule out EDS. Whatever the cause, this disease can and does make life particularly challenging, and when you add in the difficulties that always go along with parenting on a day-to-day basis, making decisions becomes incredibly complicated.
What Is Ehlers-Danlos Syndrome?
- Ehlers-Danlos syndrome - Genetics Home Reference
Consumer-friendly information about human genetics from the U.S. National Library of Medicine.
Be Sure That You Are Getting the Best Care Possible
Managing another person's medical care can be tricky, even for a child with relatively few concerns. For a child who suffers from a rare disease, this challenge increases. Making sure that he is followed by a competent physician is essential for his long-term health.
Unfortunately for my son, the only real treatment available for him is pain relievers and major brain surgery. Pain relievers obviously come with risks that must be weighed carefully. I do not want my child to be trapped in a cycle of needing more of them because of rebound headaches, neither do I want him to suffer if his headache becomes debilitating.
The topic of brain surgery is another thing entirely. For some conditions, there is almost no question that the child needs surgery. For Chiari sufferers, this can be true, but for many, it is not. In the case of my son, his neurosurgeon feels that if he were to operate it would cause him to be worse off than he is. Things that my son's neurosurgeon says he looks for are:
- Co-conditions such as syringomyelia, which is a cyst of spinal fluid inside of the spinal cord
- Raised intracranial pressure
- A blocked flow of spinal fluid
My son's spinal fluid moves more slowly through his narrow channels, but it does move. We definitely do not want to do anything that could cause him more pain and to be worse off in the end. We will not be seeking surgery at this time, but that could change if his condition changes.
Chiari Malformation Surgery
- Surgery for Chiari Malformations | Weill Cornell Brain and Spine Center
Not everyone with Chiari malformation requires surgery, but when a patient's individual circumstances warrant it, a neurosurgeon may recommend "decompression" surgery (known as a “decompressive suboccipital craniectomy and cervical laminectomy”). As
Chiari causes chronic pain. This has become the most difficult aspect of our day-to-day lives. Chiari is also incurable, so even if he were to have surgery, there are no guarantees that he would improve. In the hands of the wrong surgeon, his condition could deteriorate rapidly.
Chronic pain is difficult for an adult to deal with, but watching your child face it causes an agony that is next to impossible to describe. I would take it away if I could, but I can't. The only thing that I can do is offer compassion and understanding.
Beyond that, I still must do what every parent does. I must push him to work hard in school, to learn, to grow. I must help him learn to be independent. This is where things get challenging as a parent. It is tough knowing when to push and say, "Hey, you are going to have to keep going, I think right now you are really okay;" and when to let him just check out for a while and recuperate.
I'm not always going to be around to take care of him. He is going to grow up just like every other child does. I want to know he can make it on his own. Fortunately, it is usually pretty clear when his headaches are too much to bear and when he can get up and participate. I have to be flexible, though. That level of pain could change at any moment, and I have to be prepared to step back and re-evaluate.
Such are the challenges that every parent of a child with chronic illness faces. It is essential to find a balance here. One that pushes them gently but firmly forward but also offers compassion. Both elements are needed.
More Day-to-Day Challenges
This disease comes with a wide variety of symptoms in addition to the headaches. It can cause difficulty with sleeping, problems with motor skills, dizziness, tingling sensations, and pain in the limbs. There are even more in addition to these, and if you are curious about them, I recommend clicking the link below.
For my son, the list above are symptoms that he has dealt with all of his life. It was very difficult for him to learn to write well, for example. I did not understand at the time why his handwriting was so messy, and he did not even know there was anything wrong with his hands. He did not know that the tingling and the pain he felt was not normal. To him, it was normal!
All he knew was that he didn't like writing because it was uncomfortable to hold the pencil, so he would rush through it. As far as education is concerned, sloppy handwriting isn't the end of the world, but I have been pushing him to go slower and be more careful how he writes so he can do it well.
I also homeschool him now. This is essential for working around his headaches. His second-grade teacher was incredibly understanding and really helped us even though he had to miss a lot of school at the end of second grade. I am concerned for the future, though.
It could cause problems if he were to get an unsympathetic teacher, and it is not necessary he go to the doctor for a note every time he gets a really bad headache. So to solve that problem, this is the path we have chosen to take.
Every Child Is Unique
In the end, parenting a child with chronic illness is really no different than parenting any other child. Every child is unique, and I can testify that each one comes with their own sets of challenges. However, it can be more difficult to know which path is the right path to take concerning health care needs, education, discipline, etc.
We parents of children who have a little bit more to face concerning health want the same things for our children that any other parent does. So I would recommend coming up with a plan on how to get you there that is best for your child and not worry about how other people are getting there. Include realistic expectations and healthy goals instead of those fluffy goals we had at the beginning of our parenting days.
This content is accurate and true to the best of the author’s knowledge and is not meant to substitute for formal and individualized advice from a qualified professional.
LJ Scott from Phoenix, Az. on August 24, 2016:
It must be very difficult for you... I applaud your honesty in sharing your story, and I like the fact that you said " like every parent I must push him in school..." You are obviously being brave enough to motivate him...
May God continuously Bless you with such strength