Although CFIDS and Fibromyalgia can occur at any age, even in childhood, it is poorly diagnosed in the young. Children and adolescents frequently have a gradual onset of symptoms. However, the types and degree of the symptoms are similar to that seen in adults.
Pediatric CFIDS/FM can be even more confusing for doctors and parents because children’s reported symptoms are frequently inconsistent. And the children often come to think of their symptoms are “normal” or that they are just having “growing pains.” I imagine many of us can remember those kinds of feelings as kids. Because the symptoms may seem strange to them, they are afraid to report them, or they feel guilty for not feeling well, so they decide they shouldn’t complain. In addition, because of the gradual onset, pediatric symptoms may not fit the usual diagnostic criteria until the child has been ill for a number of years.
Unfortunately, kids hear “it’s all in your head” as often as we do. Their symptoms may be blamed on school phobia or stress. They may be labeled as lazy, slow learning, or shy. They may be seen as depressed or as having behavioral problems because of their complaining or inability to participate in some activities. Or their symptoms may be attributed to an inability to cope with the social interaction required by school attendance.
In an article titled WHY CHILDREN WITH CFS ARE OFTEN OVERLOOKED (1996)* authors Rebecca C. Moore and Frank Albrecht, Ph.D., discuss some of the reasons that these children are so difficult to diagnose. “Suppose you’re a mother who enjoys normal good health and your female adolescent says to you: ‘Mom, I’m awfully tired all the time. And my bones hurt, or something. And I feel like I can’t think straight anymore. I feel weird.’ What might you think?
Adolescent adjustment problems?
Too many activities, too many late nights?
Lack of vitamins and minerals?
Avoiding school or work or other responsibilities?
Drug or alcohol use?
Just plain fussiness?
Chronic Fatigue Syndrome?
Most likely, you’d consider ‘all of the above’ as being possibilities – EXCEPT Chronic Fatigue Syndrome! That probably wouldn’t occur to you. In fact, you might never have heard of it or know that children can get it.”
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The authors also talk about the situation where a parent or other relative may have CFIDS or a similar disease, and the child may see his symptoms as normal. If he sees symptoms similar to his in an adult in his life, he may never tell anyone what he is feeling.
When a child complains, adults (shame on us) frequently don’t take the child seriously. Children usually are not strong enough or assertive enough to tell adults that they need to believe the child’s symptoms. Children are taught that when adults tell them something, it is true, especially if that adult is a doctor.
Even when symptoms are apparent to others, the child may deny illness because it is “uncool” to be sick. Some children even deny symptoms after diagnosis because “being different isn’t acceptable.” They may even lie to their doctor, “telling him what he wants to hear in order to avoid his disapproval.”*
Ms. Moore (a CFIDS sufferer) and Dr. Albrecht say: “In summary, CFS in children is often overlooked because:
1. Parents aren’t familiar with it or aren’t looking for it in their children.
2. The early symptoms often lead to an incorrect diagnosis of emotional or adjustment problems, which precludes looking further for explanations.
3. Children often misinterpret their symptoms, seeing them as inappropriate, shameful, or signs of inferiority. This leads them to hide their symptoms from friends, family and physicians.
4. The gradual onset of the disease, which is more frequent in children than in adults, may lead the child and the significant adults in her life to think that her low functional level is normal for her.
5. Pediatric CFS, in its early months or years, often does not meet the formal CDC criteria for CFS. Hence the physician rejects this possibility at the onset, and might not wish to revisit that issue later.
6. Many pediatricians and family practice physicians were taught in medical school that the confusing pattern of symptoms typically seen in pediatric CFS is an indication of neurasthenia, a ‘neurotic’ condition.
7. Children have a hard time telling adults what is wrong with them, especially if the adult is skeptical.
8. Many parents are intimidated by doctors and cannot assert themselves if they feel an incorrect diagnosis has been given. They frequently lack the time, money, and communication skills it takes to negotiate the maze of specialists and insurance company referrals it often takes to reach the large medical centers where most pediatric CFS diagnoses are made.
Given all of this, it’s amazing that any children at all are diagnosed with this condition!
Having a child with CFIDS/FM must be a parent’s nightmare. It is difficult when you are the one facing the disease and the challenges it brings. But to have to watch a child deal with this has to be much worse, in my opinion.
In addition, a parent has to deal with the child’s educational needs. To assist in that area is Public Law 94-142 (in the US) which mandates free, appropriate public education for all children with disabilities, ensures due process rights, and mandates education in the least restrictive environment with individualized education programs. This law gives you a channel through which you can request and get the educational needs of your child met in the most appropriate setting for the child. If you have a child with these needs, I recommend looking up the law on the Internet for more information on how to interact with the school system.
Although there is not a lot written about childhood CFIDS/FM, I did find references on the Internet. During my research, I also found several recommendations for a book I have not yet had the privilege of reviewing. Based on the reviews I read, and the authors, I would recommend it for any parent who has a child facing these diseases. It is
A Parent’s Guide to CFIDS: How to Be an Advocate for Your Child with Chronic Fatigue Immune Dysfunction Syndrome, by David S. Bell, Mary Z. Robinson, Jean Pollard, Tom Robinson, and Bonnie Floyd, (1999, Haworth Medical Press). I’m sure it can be ordered by any bookstore or purchased online.
I hope I have been able to provide a bit of information for any of you who might have, or know children with CFIDS/FM. Children need our help to navigate the system of healthcare that is so difficult even for us as adults. If you have questions, or need more information, please feel free to write to me. Take care and be well.
Yours in health,
I welcome your comments and questions at: firstname.lastname@example.org. My
articles and email responses are not being offered as those of a health care
provider. The information and opinions included are intended to give you
some information about your disease. It is very important that you empower
yourself with knowledge and participate in your own search for care. Any
advice given is not intended to take the place of advice of your physician
or mental health care provider. Always follow your physician’s advice, even
if contradicted by something written here. You and your physician know your
situation far better than I do. Thank you and be well.