CHILDREN – MORE VULNERABLE YET EVEN MORE INVISIBLE
CHILDREN AS PATIENTS
Babies, children and youth are more vulnerable to environmental hazards than adults in ways that have becom increasingly well-known. It is also becoming increasingly well-known that early exposures to harmful chemicals results in life-long chronic health problems. So finding ways to prevent exposure and to ameliorate harms at an early age is an urgent social priority.
An excellent overview of the research linking early exposures to life-long consequences can be found in Early Exposures to Hazardous Chemicals/Pollution and Associations with Chronic Disease: A Scoping Review. (A report from the Canadian Environmental Law Association, the Ontario College of Family Physicians and the Environmental Health Institute of Canada. Cooper K, Marshall L, Vanderlinden L, and Ursitti F. 2011.)
Two great on-line resources to learn about children and the environment are:
It is not surprising, then, that children and youth also suffer from ES/MCS, ME/CFS and FM. However, there are no dedicated programs, facilities or practitioners in Ontario working with kids who are dealing with these very difficult conditions.
You can find some discussion of the issues as they relate to children in the OCEEH supporting documents, in the sections devoted to the respective conditions in Chronic, Complex Conditions: Academic and Clinical Perspectives, pp. 26-52 , and in Recognition, inclusion and equity – The time is now: Perspectives of Ontarians living with ES/MCS, ME/CFS and FM. pp. 126-132.
Prevalence of these conditions has not been studied at all in Ontario or in Canada as a whole, and the OCEEH project was not funded to address this critical issue. Studies from other jurisdictions, discussed in Clinical and Academic Perspectives, demonstrate significant incidence of this conditions.
Children’s health is suffering as our environment becomes becomes more polluted, and so are more prone to a number of environmentally-linked illnesses. It is urgent that research be conducted to determine the incidence of the three CELCs among young people. Reports to patient’s organizations of the extraordinary hardship imposed on children by the lack of understanding of these conditions in medical, educational, social and familial settings painted a tragic picture, which is in our power to change.
CHILDREN OF PATIENTS – HARD ON KIDS, HARD ON FAMILIES
As well, children are negatively impacted when their parents or siblings must live with these conditions, and the strain of being sick and feeling unable to properly care for your children is very hard on parents. The lack health care, social services and normal familial and social all impact families very negatively. Here are some words from participants in our community consultation.
FROM THE COMMUNITY CONSULTATION
It was hard on my kids, because I had to take all these breaks all the time, to lie down and recharge. So they were kind of, like, on their own in a way and it got so bad. … My wife and I were separated, and I simply said to her, ‘you need to take a couple of the kids back.’ One of them didn’t want to go. He stayed with me. He was the oldest. But I didn’t feel that I was able to take care of them. So I asked my wife to look after the other two. Frank ME
My younger son lived with me all that whole time. He is seriously affected (cries) because, for instance, he couldn’t have his friends over. All his friends wore Axe or something that is definitely a no-no. I can’t be exposed to that. So his social life was definitely changed…. He had to worry about his mother a lot more, because his mother was in pain, because his mother was fatigued, he didn’t know if his mother was going to die. Don’t forget he was maybe twelve when I was disabled. … most of his teenage years I’ve been in arbitration and human rights so … he was [not] immune to that, he had to get the side effects. These are very serious emotional and physical demands on our family. Elva MCS FM ME
I wish there was a caregiver because when you’re in bed for five years and you’re trying to look after two sons who want meals made. [laughs] I just wish there was some caregiver that even would come in once or twice a week to help you …. because we don’t have much money on disability. And I just felt so bad not making the meals and driving my kids the places that they wanted to be. I couldn’t drive because I figured I’d kill me and them too, being so exhausted. And I felt like a bad mother. Judy ME FM
[My wife] agonizes. We just had a grandson born in June and she finally saw the grandson for the first time in September, because she is at a stage where if she overdoes it, she’s afraid of a serious relapse. She’s had three serious relapses since 2002 and she’s, at the moment, not recovered to the level she was in 2006, 2007. She’s afraid of getting an even lower level of functioning, when at the moment she can hardly do anything. Which, as you can imagine, causes a grandmother a great deal of grief and distress? She feels horrible for not seeing her son and her grandson when they’re in the house and at the same time she’s afraid that if she does it’ll have drastic consequences. She could certainly use some help, but I don’t know who’s available to provide that kind of help. Thomas