Pediatric MS Can Be ‘Diagnostic Odyssey’
A post in one of the MS social media groups I follow recently asked whether kids can have MS. The writer was worried about her 3-year-old.
One commenter replied that her son was diagnosed when he was 9. But, she wrote, his symptoms actually began to appear when he was an infant. A 2018 study by the Cleveland Clinic reported a case of MS in a child as young as 2.5 years old. It’s not an easy diagnosis to make in a youngster. And it’s not an easy process for the children or their parents.
A difficult diagnosis
Theodore P. Cross, a researcher at the University of Illinois, has studied the families of children diagnosed with pediatric-onset MS (POMS). In an article on the university’s website, he says parents know that something is wrong with their child but their doctors can’t pin it down.
“Many of these kids went through a diagnostic odyssey where they would go from pediatricians to emergency rooms to other pediatricians, and it could take weeks to even get the diagnosis that they had MS,” Cross said, according to university education editor Sharita Forrest. “Meanwhile, their bodily function is off. They’re suffering from fatigue. Their vision and mental processes may be affected. They have no idea why and no diagnosis to explain it.”
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Children often have symptoms that are different from adults. Some of the parents in the study said they didn’t initially realize their children’s symptoms might indicate a serious illness.
Sometimes those medical problems reveal themselves in the classroom. According to study co-author Lisa V. Duffy, in some cases, those problems at school are what pushed doctors toward an MS diagnosis. “Many times we would see patients where their primary symptom was that they were starting to fail classes or their grades were really dropping, and somebody picked up on it that way,” Duffy said, according to Forrest.
Tough on the entire family
Cross and his colleagues studied 21 couples whose children had a confirmed diagnosis of POMS. Unsurprisingly, their study found that these families were overwhelmed by juggling visits to doctors and hospitals and were stressed by the impact of MS symptoms on their children. Some parents were uncomfortable seeing their children injected with a disease-modifying therapy, and some were uneasy with the side effects those medications caused.
According to study co-author David J. Rintell, “it was very clear that the parents were suffering gravely. They were very worried and concerned about their kids, as one would expect.”
What’s being done for POMS?
Over the past several years, healthcare professionals have awakened to the fact that kids can have MS, too. And they’re beginning to address the unique problems that MS holds for both these children and their parents. The National MS Society has a section on its website devoted to POMS. So does the MS Trust. The Children’s Hospital of Philadelphia has a webpage and a specialty clinic.
The Pediatric MS Alliance (PMSA) has a membership of over 500, made up primarily of the parents and caretakers of young MS patients. The PMSA has a closed Facebook group and a website. There’s also “Oscar the MS Monkey,” who has a Facebook page devoted to children with MS.
Did I have POMS?
I was diagnosed when I was 32. I never thought about the possibility that I was showing MS symptoms as a youngster, but maybe I was. In high school, I would sometimes doze off in class. I had a high IQ, but I never had high grades. And I had trouble memorizing things. Were these early signs of my MS future? Well, even if they were, there wasn’t a whole lot that could, or would, have been done about it back in the 1960s.
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Comments
Agnes Weessies hi
Being diagnosed is difficult at all ages. It's often a path of excluding g everything else. To get a diagnosis in a young child in just weeks makes me extremely mad. Not for the child, but for adults that it can take years to decades to get the same diagnosis.
When my son at age 31 was diagnosed, the comment from all doctors involved was "hes awfully young to have MS. Normally it is not for people unless they are 30 to 60 years of age!" Hello he was 31. Since that time 3 years ago, I've looked back to see the symptoms as early as 9. Not minor ones but major ones. My heart bleeds for all the children and their families that have to go through this nightmare to get diagnosed. There are two tests, MRI and lumbar puncture that can pretty much give the diagnosis. Why then are they not done in a timely manner.....talking at insurance companies that refuse to allow them.
Ed Tobias
Agnes,
"Awfully young" at 31? Wow...I was diagnosed when I was 32 and no doctor ever said anything like that to me. The medical community needs to take off its blinders about this sort of thing. It seems as if it's moving in that direction. Let's hope it is.
Ed
Penina Scullion
I was coming to comment about "weeks".
For most of our POMS kids, it's much more normal for it to take months or years.
For instance, my daughter had small signs of MS at the age of 3 (multiple cranial nerves to one eye), with more signs at 6, 8 12, 14, and then almost constant...it took until she was 17 to be diagnosed, with only a GI specialist commenting, "I really only see this in MS patients, but that can't be her issue, kids don't have MS."
Mary
I'm a member of PMSA (my daughter diagnosed at 16). It's tough. And so many kids are so young! I'm grateful for the diagnosis. It took a good neurologist listening to me when he said he didn't see anything wrong and I said, there is something wrong. MRI ordered and bingo, diagnosis made. But there were different things "wrong" for years and by the time you could see a doctor, nothing is wrong anymore. Thank you for bring this topic up.
Tina
My daughter was Diagnosed with MS at age 10. At first they said ADEM. She too young to have MS. Than what do you know it was change with 6 months to MS. I'm thankful for all the people I have meet along the way. SO very thankful for her neurologist at UVA . He is the BEST. I would have to say every MS is different not one is same but I'm thankful we can share our stories.
I'm also thankful for treatment that is keep her sable .
I’m a member of PMSA also. If there is families looking for other families going through same thing I would say look up this face book page https://www.facebook.com/groups/PMSalliance/
Celeste
My son is 10. We have been to pediatricians, internal medicine, gastroenterologist, physical therapist and psychologist. Now going to neurologist next week. He is so weak and tired. His eyes flutter like he is going to fall asleep constantly. The main concern is his legs, he says they hurt soo badly and he is having to use a cane to walk almost to the point of a wheel chair. All doctors say they are stumped and it’s in his head.
Denise Young
My son was diagnosed at 9, after years of trying to get doctors to listen to me. We knew early on their was something wrong but didn’t know what. It’s a very difficult road for pediatric patients and their families.