Family matters: Tales from a pediatric MS clinic

People in Canada are most commonly diagnosed with MS between the ages of 15-40, but did you know that it can affect children as young as 2 years old?  Lynn MacMillan has been working as a pediatric MS nurse at the Sick Kids Hospital in Toronto since its inception in 1999. We sat down with her to discuss her role in the lives of children living with MS.

By Lynn MacMillan

Because MS is unpredictable and episodic in nature, we manage concerns over the phone and by e-mail quite a bit. We do a lot of education on the disease itself: what is MS, how to recognize relapses, how to deal with symptoms that run the gamut from being very mild to completely life altering. We talk a lot about the importance of being adherent with medication and what that means when choosing a disease modifying therapy. We like to remind parents that their child has MS but it does not entirely define them – they are a kid first and foremost who happen to be living with MS.  We try very hard to keep kids out of the hospital, out of emergency, and encourage leading a regular life. We meet with the families whenever they need to, basically.

My friend and colleague, Jennifer Boyd, Clinical Nurse Specialist and I are both certified Neuroscience and Multiple Sclerosis Nurses. We have worked in the Pediatric MS Clinic at SickKids since its inception in 1999. We are lucky to have recently recruited Joley Johnstone, Nurse Practitioner to our team. Dr. Ann Yeh is the director.

Almost all of the children we see present to their family doctor or pediatrician first, with concerning symptoms. A referral is made to our clinic, we meet the patient and family, a consult is done and investigations begin and the diagnosis is made over time.

Kids are resilient, parents are often much more upset about the diagnosis than the kids themselves. I think that the approach of the disclosure and the support we provide make understanding and accepting the diagnosis a little better.

Ongoing research has resulted in several new disease modifying therapies that are available for our young patients.  These therapies may involve daily injections/ pills or less frequent infusions.

For the most part children with MS are quite well and stable, happily. There are some kids that really have a rough go of it but within any population, you’re going to have people on either end of the spectrum.

When our kids graduate out of our clinic to adult care; it’s very emotional, we’ve been through a lot with these kids and their families.

I always think of one young boy, diagnosed at six years of age who had a very rocky course – he ended up losing his vision. He was one of the original campers at MS Summer Camp and he never missed a year until he graduated at 21. Just seeing him through so many things, becoming a man,  getting his service dog – everyone at Camp loved him and his dog, Agent, graduating from Elementary School and High School, playing goalie for his hockey team, cliff jumping to name a few. His story is a feel good story for me. I don’t know where life will take him, but I’ll always have a soft spot in my heart for him.

Well, I have a soft spot for them all. I have so many great stories.

I keep in touch with many of the kids who have come to MS Summer Camp. The campers are a family, they refer to themselves as “my MS family” and it’s just a wonderful thing for them. They’re very, very supportive of one another.

Having experienced MS nurses at camp is comforting for families, especially for younger campers who may be reticent to come.

The first year of MS Camp in 2005, was fantastic – I believe back then it was only for three nights.  Once the kids got there and met each other, they absolutely loved it and the feedback ended up being that they wanted camp to be longer! So every year since then it has been a whole week long. It just gets better and better every year. Barb, the director of Camp Merrywood, is amazing and has so much experience. She employs exemplary counsellors who are very well trained and full of life. She always gives the campers plenty of hang time so they can chill and rest.

The nice thing about camp is that they all have MS, they all know what each other is going through. MS Camp offers a wonderful place for them to have FUN on their terms.

I’ve been a nurse now for 42 years. I’ve worked with neonates, children, adolescents and teens for 40 of those years. I love children, I love their energy and their humour, their kookiness, their vulnerability, honesty and trust. We have a hoot with the kids. Kids are so insightful.

Working with children who are impacted by a chronic illness, I have learned, above all else, how resilient they are, for sure, and also their strength and bravery.

Lucky me!

MS Family Camp takes place at Easter Seals Camp Merrywood in Perth, Ontario from August 25-31, 2017. For more information visit www.mssociety.ca/camp or contact Jackie Mahoney, Camp Coordinator via email at jmahoney@easterseals.org or toll free at 1-800-688-6252 ex 325.