Understanding MS in Children and Teens
I was diagnosed with relapsing and remitting multiple sclerosis (MS) when I was 32. By this point, I’d been to university, traveled, had my own business, met my life partner and gave birth to my first child. I felt like I lived my life to the fullest and didn’t have much left to prove or achieve. I also had the emotional resources to deal with my MS diagnosis and was able to cope with it as an adult.
Looking back, I was experiencing MS symptoms since I was 17, and it took many years to piece it all together to get a diagnosis.
I often wonder how I would have coped if they told me it was MS after that first flare-up. How would the prognosis be impacted? Would my life choices have been different with MS hanging over my head?
'Does My Child Have MS?'
A few weeks ago, I was on a bachelorette weekend with 12 fabulous women, most of whom I’ve known for at least 25 years. The bubbles were flowing, and I had a lovely catch-up conversations with everyone.
One friend was telling me about her 12-year-old son, who’d been having worrying medical problems. He’d had optic neuritis as well as fatigue and cognitive issues, so an MRI scan identified lesions on his brain. My heart sank for the poor little chap, and I tried to be as reassuring as I could.
It must sound familiar to many readers as optic neuritis is often one of the symptoms that lead to a diagnosis, but I‘d never heard of it in one so young.
It’s hard to be reassuring when you’re sat on a mobility scooter as most able-bodied people would see this as the worst thing imaginable, but I pointed out that MS is different for everyone and recommended she see an MS specialist as soon as she can to get the best advice possible.
Juvenile Multiple Sclerosis Facts
According to the MS Trust, fewer than one in every 100 people with MS experience symptoms before the age of 10, but 2 to 5 in every 100 will experience symptoms before the age of 18. And 98 percent of children with MS have the relapsing and remitting type of and may be offered disease-modifying drugs (DMD’s) to control the number and impact of relapses.
The MS Trust also points out that diagnosing MS in children is problematic as there are other conditions in children with similar symptoms.
Although it’s a scary diagnosis, it’s important to remember that everyone with MS is different and this is true for children as well as adults. It’s impossible to predict how the MS will progress, but many children with MS will make a complete recovery after their first attack. They may go on to experience further relapses as adults, but they may not.
How MS in Children Appears
Multiple sclerosis presents itself in a different way when it affects children. There may be a period of neurological symptoms that include headaches, seizures, stiff neck, lethargy, and fever that arises only temporarily. But other children may continue having these symptoms or have other symptoms that support the diagnosis of MS.
Luckily, physical disabilities will develop more slowly in children but due to MS symptoms starting at earlier age levels of disability are generally reached sooner than those whose symptoms began in adulthood.
Symptoms of MS in Children
There are certain symptoms to look for in children:
- Weakness
- Muscle spasms
- Tingling, or numbness
- Tremors
- Vision changes
- Problems with walking
- Sensory changes
- Problems with bladder or bowel control
- Seizures
- Lethargy
These symptoms can be mild or they can be severe. They may last for a long duration of time, but they may just be present for a short time.
MS Treatment for Children
It’s easy to get overwhelmed with worry for the future, and I get dark moments of terror sometimes but maybe finding out early gives you more time to fight back. As with adults, relapses can be treated with steroids which will speed up the recovery process. DMD’ s can also be prescribed, and luckily there are so many to choose from these days.
There are also numerous therapies and treatments for symptoms now such as occupational, therapy, neuropsychologists, counselors, and physiotherapists.
Making lifestyle changes are also important, and the younger these changes are made the better. Eat well and exercise, and most importantly–don’t smoke!
So, for anyone who's worried about a child having MS, I would give the same advice to adults I come across. Get the best specialist you can and pay for it if you can afford it. Fight for the best healthcare team as I wasted so much time seeing people who knew less about MS than me!
Get to know your own body. When are symptoms worse? What triggers flare-ups and relapses? What makes you feel better? Lead a healthy lifestyle and avoid stress but also, knowledge is power. The more you learn from trusted websites, such as the MS Trust, the better equipped you’ll be.
MS isn’t a death sentence even when diagnosed young so pick yourself up, dust yourself down and get on with life.ow would i