children with fm/cfs

Discussion in 'Fibromyalgia Main Forum' started by 3gs, Feb 24, 2010.

  1. 3gs

    3gs New Member

    Hi I have been researching for a good source of info about kids with this dd.

    My daughter has this and my gdaughter is classic. My daughter refuses to recognize it and thinks Im over reacting.
    I have been trying to find a good article to send her.

    My gdaughter has constant sore thorats(sometimes strep)cold hands and feet,fatigue,trouble concentrating(has affected school)all trigger points and more,headaches many other issues. I did get her to ask doc to ck her blood for ebv(me&daug both had)but doc said no.

    I have both fm&cfs. My father died from complications related to untreated cfs.

  2. hensue

    hensue New Member

    or cfs. I am of no help in that dept. This is one of the reasons I went ahead and had the xmrv test. I feel like I need to do something to help young ones. It is horrible for a child or anyone for that matter get it.

    You might be able to sign her up on the whittemore peterson institute and hopefully she could eventually get in a trial. They might test her for free. It would be something to look in to.

    Take care
    your father died of complications of cfs, that is horrible. I am very sorry
  3. sickofcfs

    sickofcfs New Member

    Try this:
  4. rocky76

    rocky76 Member

    Fibromyalgia in Children

    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.
  5. Nanie46

    Nanie46 Moderator

    I would give strong consideration to the fact that your daughter and granddaughter (and you too) may have chronic bartonella and borrelia burgdorferi infections...maybe even babesia.

    You can read more here....symptom list p 9-11, coinfection info (babesia, bartonella, etc) on pages 22-27.

    Tick borne diseases are passed from mother to fetus through the placenta and through breastfeeding. They also occur in whole families sometimes since family members spend time outside in the same tick infested areas.
  6. 3gs

    3gs New Member

    Thank you all for the info.
  7. AllWXRider

    AllWXRider New Member

    Some docs only check TSH. Our body runs best at 98.6°F. Running at a lower body temp makes one prone to infections. Low thyroid can cause fatigue, depression, poor concentration, slow heart beat. It affect nerve conduction velocity, so tripping, stumbling can result.

    It can be difficult to find a doc that will thoroughly check the thyroid function. Armour or time-released T4/T3 can make a huge difference. Ask your local compounding pharmacist for a doc in your area that prescribes it. A great doc will check the Free T4, Free T3, RT3 (reverse T3).

    High Reverse T3 can indicate an infection.

    Also, children can have sleep apnea. Is the sore throat and headaches esp bad in the morning?