Chapter 7: Fibromyalgia in Children
Excerpted from Fibromyalgia: A Comprehensive Approach by Miryam Williamson Copyright 1996.
Until recently, fibromyalgia was considered an adult disorder; children were thought not to get it. Then, in a study published in the Journal of Rheumatology in 1993, a team of doctors in Israel reported that 6.2 percent of 338 healthy schoolchildren between the ages of nine and 15 met the criteria for the fibromyalgia syndrome. At nearly the same time, a rheumatologist in the US asserted that 45% of the children referred to him had FM. Of these 15 children, nine had been diagnosed incorrectly with juvenile chronic arthritis, three had been told they had growing pains, and two had been given a psychiatric diagnosis. Since then, doctors have been paying more attention to children's complaints of pain and are diagnosing FM with increasing frequency. [...]
Children's complaints of pain must be taken seriously, lest they grow up with untreated FM. Growing pains are a particularly pernicious myth. It should not hurt to grow, and the child whose pain is brushed off that way is a very unfortunate little person. FM is often a family affair [...]That is not to say that your children are sure to have FM if you do, but I hope it will motivate you to be extra vigilant. Children need us to take their complaints of pain seriously. Fibromyalgia can make a child's life miserable at school and on the playground. The child with FM needs a great deal of special help and understanding.
Many adults think of childhood as a carefree time, full of fun and excitement. Some find it hard to comprehend the depth to which children can feel pain, both emotional and physical. Small children want nothing so much as to please the adults around them, and to gain their respect and affection. If parents place a high value on stoicism, then their child will believe that the way to gain approval is to grin and bear it, and is likely to miss badly needed medical attention.
Detecting FM in Children
FM in children often starts with a flu-like illness from which the child seems never to have fully recovered. Sometimes, particularly in children before puberty, the ailment simply comes on gradually, without any obvious precipitating event. Very young children may not remember a time without pain, and thus may not complain at all. [...]
You should suspect fibromyalgia in a child who sleeps restlessly, kicks or twitches during sleep, and has a difficult time getting out of bed in the morning. [...] Insomnia coupled with pains or aches is a trouble signal and should not be ignored, particularly if one of the child's parents has FM.. Sometimes an alert teacher is the first to notice a problem. [...]Children with fibromyalgia often have trouble in school. A considerable amount of schoolwork requires memorization. The cognitive difficulties that often accompany FM may make this difficult, if not impossible.
FM for me as a child consisted of intermittent severe diarrhea, difficulty controlling my bladder, shooting pains in my legs, deep aches in my calf muscles that felt as though my marrow was burning, frequent severe headaches, lack of stamina, and insomnia. Some of my earliest school memories are of teachers joining in with my classmates to taunt me because I wasn't always sure where my feet were. Needless to say, I was never the first chosen for any team game. [...]
Children who squirm and fidget in class may be trying to keep themselves from falling asleep. They may also find it painful to sit in one place for long periods of time. Some symptoms of FM may manifest themselves in the classroom as Attention Deficit Disorder (ADD). Not all children with ADD are hyperactive, as was once thought. There is a form known as "quiet-ADD." Some pediatricians say this may be an early symptom of fibromyalgia in some children. A sharp pediatrician can tell the difference between ADD and FM by performing a tender point examination.
[...]Another characteristic of children with fibromyalgia is that many of them have hypermobile joints — that is, they are "double-jointed." [...] Being double-jointed is not a sure sign of FM, but it should make a parent suspicious.
All parents, particularly those with FM, should see to it that their children are examined for fibromyalgia as soon as they are old enough to say if they feel pain during a tender point examination. Early intervention is important; proper treatment may save the child from a lifetime of suffering.
Tips for dealing with FM in children
Some doctors put children with FM on a very small dose of a tricyclic agent or muscle relaxant. Others prescribe Benadryl at bedtime for sleep. A child who learns good nutritional habits early in life, grows accustomed to going to bed at the same time every night, and is encouraged to take part in a suitable exercise program will be well equipped to avoid FM flareups throughout life.
If your child is diagnosed with FM, you will need to do some explaining. What you say and how you say it will have a profound effect on the child's reaction. Children are particularly vulnerable to thinking that anything that goes wrong is their fault. You must stress that FM is nobody's fault and that nothing anyone could have done would have prevented it. How much you explain about fibromyalgia will depend, of course, on the child's age and intellectual development. Above all, the child must understand that FM can be controlled. [...]
Raising a child who has fibromyalgia is a real challenge. You will need to remember that some days are worse than others, and allow the child to set the pace. Household chores should be adjusted to fit the situation, and flexibility should be the overriding principle. Teachers and school administrators should be informed about your child's FM. They must understand that the child can feel well one day and terribly the next, and that people with fibromyalgia almost always look better than they feel.
Any condition that interferes with a child's learning ability entitles the child to a special needs assessment and education plan, according to US Public Law 94-142, which provides for the education of children with special needs. If your child is having trouble with schoolwork, you may have to be persistent in getting the school to agree to this assessment, but it is your right and you will eventually prevail if you keep at it. Among the accommodations that have been granted to children with FM are two sets of school books so that the child need not carry books to and from school; a tape recorder to eliminate the need to take notes; and a flexible class schedule that allows the child to take her most difficult classes at the time of day when she is feeling her best.
If your child's classmates are making his or her life miserable with teasing, a word with the teacher is in order. Children generally take their behavior cues from their teachers. If the teacher makes an offhand remark about the FM child's clumsiness, or chides the child for being lazy when fatigue strikes, the teacher's attitude will surely lead to teasing by the other children. It is up to you to cultivate the kind of relationship in which your child can confide in you about such problems. An appointment with the school's guidance counselor can often set things right. Proper treatment can make a world of difference. [...]
There is evidence that fibromyalgia in children may not be a lifetime sentence. One study found that 30 months after diagnosis, 11 of 15 children with FM (73%) were no longer fibromyalgic. "We suggest that the outcome of FM in children is more favorable than in adults," the doctors who conducted the study wrote. Guaifenesen has been found to bring some children to a pain-free state, according to their parents. Early intervention seems to be the key in children with fibromyalgia.
Copyright ©1997, Miryam Ehrlich Williamson - ALL RIGHTS RESERVED

For Joey

Joey, I know you are busy and may not have the time to research childhood fibromyalgia. So when I find something that I feel relates to Marcus I will post it here for you to read.

Spoke To Soon

I had to go and pick Marcus up from school today around noon cause he was in too much pain to finish out the day :-(

Back to School

Joey, I wanted to let you know that Marcus went back to school today and made it the whole day. I took his wheelchair for him to sit in and so he doesn't have to walk over to the cafeteria, library, etc. He is still in pain but said it was no worse than sitting at home all day long.
Maybe, just maybe things are turning around for the better (fingers crossed).

Treating Lupus-why we didn't

I have been asked before that if the other doctors were so sure Marcus had Lupus then why did we not treat it with anything but pain pills.
Doctors at St. Louis along with his regular ped told us that some of the medicines could be toxic if used in someone without Lupus. In other words the very medicine that could really help someone with Lupus could kill someone that took it and didn't actually have the disease.
We did consider one medicine but after researching it and knowing it could cause permanent retinal damage we deciding against it till receiving a second opinion which is what lead us to Cincinnati. Thank goodness we waited for another doctor's advice cause we might have put him on something that could have caused blindness.

Hope

So why did we end up in Cincinnati so soon?

Joey had drove to Memphis to start his flight back to Brazil. After he was already in TN he finds out that his flights had been rescheduled for the 1ST cause the rig had been moved.
During this time back at home I was becoming more and more worried about Marcus, he looked awful. He was pale white with dark black circles under each eye. His pain level was through the roof too.
When Joey got back home I told him to go and have a good look at Marcus. He said the same thing I had been thinking, we could no longer wait to get a diagnosis and help.
By 10PM that night we were on the road heading to Ohio.
We took him through the ER and rheumatology meet us. There is no other way to put it than to say God was watching out for us. The top doctor over the department came down to exam him. We didn't know it at the time but Dr. Lovell was named one of the top doctors in 2008 (as well as 2005). Maybe we got him cause we said we wanted the best they had but I think the whole situation was above that.
After reviewing his records from St. Louis, asking many questions and a very good exam he told us without a doubt he does NOT have Lupus! He has Juvenile Primary Fibromyalgia Syndrome. Yes it can be a chronic disease and he will have pain from time to time but it can get better with the proper rest and exercise. This was the greatest thing I have ever heard in my life----it WILL get better! I know Joey and I were both fighting back the tears and the desire to hug this doctor who just told us that there was a light at the end of this very dark tunnel we have been stuck in for almost a year now.
He sent us down to see a physical therapist who fitted him with special inserts for his shoes. He instantly started walking better, less of a limp and straighter. She also showed him some exercises to do to loosen yet strengthen his muscles that are so tense and causing all the pain.
He has been wearing his shoes, doing his exercises, and taking his sleeping pill and is already doing much better. Right now he is sitting at the kitchen table doing his homework without being forced to and it is all because he feels better overall.

One Word

After a very quick, unplanned trip to Ohio it seems we may have an answer summed up in one word-Fibromyalgia.
Juvenile Primary Fibromyalgia Syndrome (JPFS) to be more specific.

You can read more about it here
http://www.cincinnatichildrens.org/health/info/rheumatology/diagnose/jpfs.htm

For now I am tired and heading to bed but for the first time in a long time I have hope and that is a wonderful thing to feel again!

Sick of Sick

I usually try to keep this blog a happy place cause when we look back on it years from now that is what I want to see and read-happy things. The truth is right now is not a happy time for us though. Marcus is truly sick and no one can figure out why.
He spends his days in agony. He can no longer get up off of the couch by himself. He can not be on his feet long enough to take a shower. He hasn't been able to dress himself for quite some time now. We are teaching him through home schooling cause the pain is to great for him to make it through even a day of regular school.
For pain we have tried Tylenol with codiene, Vicodin, Tramadol, and Oxycodone as well as IV Morphine. The only thing that has helped was the IV but he can't stay hooked up to it indefinitely in a hospital. They can't do an IV with it at home cause of the risks it carries, believe me I have asked.
Yesterday Joey and I finally caved and gave in for him to be put on Oxycotin. This has been a huge struggle for me cause I know how strong of a drug it is. I had a family member die from an overdose of it so I know firsthand that it is nothing to play around with. But what do you do when your child is in constant pain? Sit back and watch?
Sit back and watch....really that is all you can do.
We have taken him to the two best children's hospital within 200 miles. He has seen his pediatrician so many times that when I call now the nurse automatically puts the doctor on the line. We have tried different anti-inflammatories which ended up making his stomach bleed. I listed all the pain meds we have tried and of course those were along with regular Tylenol and maxed out Ibuprofen. So where are we to turn? What do we do?
Let me tell you, there is nothing worse than sitting watching your sick child cry out in pain and there isn't a dang thing you can do to make it better let alone make it stop. I have never felt so helpless before in my life. I have to leave the room on a daily basis so I can go cry in private. I then pull myself back together and walk back to be with him like nothing is wrong.
If this is Lupus it is one crapy disease! It has stripped an active, full of life, a star of his baseball team, popular 10 year old boy of his life as he knew it. He can't even walk down the stairs to play a game of pool anymore. All he can do is lay on the couch. What kind of existence is that for a child who loves life and loves to be active?
We have one last hope. On Feb 3rd we are taking him here http://www.cincinnatichildrens.org/
Cincinnati is the last place we know to go at this point. They are suppose to have a world renowned rheum clinic along with a childhood Lupus clinic.
Please anyone who reads this blog pray that they can give us a diagnosis and some hope.

At Don & Sherry's

World Series coat

New Cardinal's Gear

Cardinal shoes (love the look on his face)

Stockings

Christmas morning

Dressed and ready to go to great-grandma's house

Merry Christmas Eve

Poor Daisy

Daisy had to have surgery on one of her eyes cause the bottom eyelid was turning in on the eye itself. She came home from the vet wearing this collar to prevent her from scratching at it. I have to admit when I seen her I laughed harder than I had in a very long time. I have never seen anything so funny yet so pitiful at the same time!

Best part of all-the BOX