Monday, May 25, 2009

The Parent, the Child, and the Disability


Is motherhood agony? I don’t mean the obvious -- birthing the child. I’m referring to the long time commitment to that child in the face of debilitating illness. It seems that the umbilical cord between the mother and child has a lot of significance when your child is hurting. Not all mothers may feel the empathy, and absorb the pain, but many do. Fathers are not exempt from the pain either, if father-child bonding exists.
An illness which is interior is especially difficult as no one seems to believe that it exists. It must be something that the ill person is doing, which is causing or contributing to the problem. One such illness is called CVS, cyclic vomiting syndrome, which is not an eating disorder, but a rare condition affecting a segment of the young population. The ages of the victims of this illness can vary from young children, or teenagers, to young adults. There are some cases of this condition lasting into middle age with less severity.


CVS is characterized by episodes or cycles of severe nausea and vomiting that last for hours, or days, which can alternate with intervals with no symptoms. Originally thought to be a paediatric disease, studies now show that CVS occurs in all age groups. There is a description of cyclic vomiting in Wikipedia, which also shows the number of physicians who have published articles on this little-known disease.


The effects of this illness are especially difficult for the person suffering the unexplained, and unpredictable manner of the onset of these bouts. Vomiting can occur for a few days, or continue for two weeks at a time. Nothing will stay on the stomach, and even liquids don’t stay down. Our family doctor explained it like this, ‘most of us feel butterflies in our stomachs, but the victims of this illness feel tigers gnawing at their insides’.


Our daughter has had this illness since she was sixteen, and still continues to suffer in her twenties, albeit on a lesser basis. The bouts have become less frequent and further apart, but the intensity is only lessened by a pain patch or injections of pain relievers. The pain patch she must constantly wear, but the injections are needed only when the pain becomes unbearable. The condition promotes feelings of depression, often exacerbated by the medications. The person suffering sees no end in sight, wondering what kind of life lies before them. A mental lethargy can occur, as one of the side effects of the pain-relieving drugs.


Along the way, we have taken our daughter to specialists in digestive disorders, to naturopaths, to herbalists, and to specialists in neurology, and psychiatry. She’s been seen by the top doctors in our area in western Canada. She’s had a few periods of hospitalization as a minor under the care of a paediatrician, but eventually all specialists advise us there’s nothing they can do. As parents, my husband and I were at our wits end, when I asked our doctor if he would take on the responsibility to support us in searching for relief to her pain. Our family doctor agreed to monitor the condition and to help her when she needs medication or shots. He has been an enormous help, and has counselled us as parents when we were stressed to the hilt. The other doctors in the clinic in which he works also back him up if he’s away. They have given our daughter some hope, although her objective is to try and get off the medication, if and when the pain and the bouts lessen.


We continue to look for alternatives, but they are few and far between. The illness has interrupted my daughter’s life, and for a while, she didn’t want to continue. She battles all the time to put weight on in between bouts of being sick. She can be well for several weeks at a time, then some unknown trigger brings her down for a few days, negating all the progress. It used to be two weeks out of every month, so the intensity has lessened. She is currently on disability, as she can’t work full-time, but is trying to work with a government agency to find companies that will employ disabled persons.


A parent’s life if filled with trepidation and worry about their child, and any disability puts a whole new light on raising a child. Love and support will help ease that person into society; even so, we cannot always be there when a disabled person becomes an adult.


In summary, a mother’s pain or a father’s pain is tied to the child’s ability to survive the roles that life assigns to each one of us. Challenges we can handle, but when your child is sick, it takes patience without understanding. Right now, there are no answers, only hope.

February 2009

Revised May 2009

6 comments:

  1. Wow. I remember seeing a reference to this condition years ago, but little information. I can certainly see where it would lead to anxiety and depression. Thanks you for sharing facts and insights.

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    1. Hi Li, CVS is a rare syndrome according to our doctor. Getting the diagnosis is difficult as other diseases must be ruled out first.

      It's related to nerves, but other than that the doctors are still learning how to treat it.

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  2. Like everyone else who never encountered this condition, I'm puzzled. Having had the stomach virus, I can understand where the depression come from. I'm not saying they're the same diseases, but having vomited everything I ate for 14 days straight, I felt like death was looming. I cannot even imagine how it would be like to know that these cycles will come back. There HAS to be a reason! No virus? No bacteria? Not even some overreaction in the hypothalamus or endocrine?! This might sound insensitive, but I refuse to believe that cures this day and age are so hard to come by/discover, when the 19th century and early 20th century was brimming with discoveries. I have a feeling the monopoly of pharmaceutical companies refuse to let cures be discovered at the expense of their life-sustaining products. I don't know. Sorry if this little rant offends. I hope your daughter finds the hope to fight this to the end.

    Is she into poetry? Do you know that "Do Not Go Gentle into the Good Night" by Dylan Thomas? Or "What Survives" by Rainer Maria are all beautiful and empowering.

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    1. Thanks for your comment and your rant didn't bother me. I agree there should be something they can do, but our doctor has tried everything we can. Not a lot is known about this syndrome-disease and some hospitals are trying to study it. We are still pursuing any leads that might be helpful.

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  3. you know about http://www.cvsaonline.org/index.html
    ??

    I am from Canada- Southern Ontario and my daughter has CVS. She was diagnosed at age 12 but has had this since at least age 7.

    McMaster Hospital in Hamilton has a doctor who treats CVS patients. He's wonderful. I understand that this doctor is attempting to develop a protocol for treating patients and trying to set up at least one doctor in each major city in Canada to treat patients of CVS.

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    1. Patricia, thank you for letting me know of this hospital. I'll let our doctor know so he can try to contact the hospital himself.

      Our daughter has had this for 12 years and truly sometimes feels there is no hope. We've tried numerous specialists and many medicines.

      I truly appreciate you taking the time to comment. We do know of the cvsa online site. Please keep in touch if you want to discuss any issue surrounding this.

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