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gryfalcon

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I am sharing my own experience with raising a child who has Primary Juvenile Fibro.

Is anyone else raising a Fibro Child? What have you learned? What's working for you?

My child has Primary Juvenile Fibromyalgia and ME/CFS. She beat a round with CRPS that still sort of tries to flare back up once in a while, but she has the knack of knocking the CRPS back down, now.

Here are some of the things we've learned.

The Stages of Grief (denial, bargaining, anger, grief, acceptance). We went through these when we realized we are dealing with a chronic condition that has no known cure. Every member of the family goes through this at his or her own pace. Not everyone gets all the way through to acceptance. Some people can get stuck in an earlier stage.

Discovering that doctors and school officials, neighbors, family members, complete strangers, and practically everyone we meet goes through the same stages of grief when they learn of my child's illness, and they spend most of their time in denial, bargaining and anger. The illness is invisible so they assume the child is not really as sick as they s0ay(Denial), that all that is required is a good hard push, and your round child can simply be shoved back into the typical square hole for a standard patient or student (bargaining). Then, they get angry and blame your kid (for malingering and not following the program) and blame you, the parent (For enabling and not following the program), when it doesn't work. (note the assumption that the doctor or school actually does have a solution that would work. This assumption is often false) They have to believe that you must not be doing it right, because the alternative is to believe that they don't have an answer and there is a problem they can't fix. (Anger) Occasionally, you will meet one who grieves (we had a teacher who got there), and that rare Unicorn, a doctor or school official who has reached Acceptance of your child's condition (the high school nurse knew someone with Fibro and she was Amazing).

I don't have time to handhold other people through the stages of grief. If you are not helping, you are a hindrance, and I will remove you from my path, including school officials and doctors and even family members. Allowing unnecessary obstacles in our path, allowing sources of stress to remain unaddressed, allowing unnecessary drains on our time and energy, will sabotage my child's success. I am somewhat sympathetic to those who can't adjust in time to be an effective participant in my child's progress. i realize they mean well, but I have to focus on the priority, which is my own child's health and welfare. I wish them well, but we need to keep moving ahead. I can't help every doctor or school official I encounter. They are responsible for keeping up. I'm not responsible for counselling them.

Keep your focus. The focus is the welfare of the whole child -- emotional health, physical health, and progressing through the normal stages of development. Don't lose this focus or get obsessed with one aspect at the expense of another. It will be necessary to make compromises and these compromises are the key to your child's success.

Balance is the key. There must be a balance, of work and play, rest and effort, alone time and socializing, focusing on addressing the illness and putting the illness out of our minds and focusing on other things, pushing hard and taking it easy... Balance in all things. When overall life is scaled back, each of these areas must be adjusted, too. This means school, which is traditionally full time, has to be scaled back, to allow balance in other areas of life.

Supplements have given my child's life back.

My child must find her own path to wellness. I can't know what's working, and what my child needs next, without hearing it from her. She has to direct her own path to getting well. I offer information, options, a sounding board, resources, access to solutions, but she has to make the decision on what to try next, and what to stop trying.

Art, Music, Writing, is what keeps my child sane. For another child, it may be sports or comic books or video games. Whatever it is, it is just as much an important part of my child's life as his or her education or family time, and must be a balanced part of her life.

Connecting with people, both friends her age, and adults, is critical. It's easy to get housebound, lonely and depressed with this illness. The internet can bring the world to us. It doesn't always just happen. We have to work to find new connections, and to keep connections strong.

Doctors don't have a cure, and the treatments they offer are palliative. The medications are intended to try to alleviate symptoms but don't actually improve underlying health, and, in fact, every medication has side effects and takes a physiological toll. There is only one reason to see a doctor or take medication for this disease, and that's if it improves your functioning or makes you feel better. You don't need a doctor for this disease, unless the doctor is actually helping you feel better. If you can't find a doctor who does that, a doctor may not be your best solution. There may be other resources to help you feel better, like accupuncture or supplements.

Only one doctor in ten (a hundred? a thousand?) gets it. Doctors that don't get it can be dangerous. They can cause real harm. They can do psychological damage, and physical damage to your child. Our doctor did both. It is important to trust your instincts about whether a doctor is right for you. Some doctors don't believe in fibromyalgia, and many doctors who do, have no idea how to treat it (I'm not convinced any doctors knows how to treat it). Some doctors believe they know how to treat it, but have no experience, and don't realize that what they think they know is actually wrong, such as believing that CBT and GET can cause a child to completely recover from Fibromyalgia before they reach adulthood. This belief is based in part on a VERY, VERY flawed research trial called The Pace Trial, which is the subject of a great deal of controversy, and there is pressure on The Lancet to retract publication of this trial, and on other research that is highly questionable.

Supplements are an alternative to traditional medicines, and they have less side effects and work better, but they are expensive, and you need a large variety of them to see a significant improvement, and it requires many years of research, trial and error, and a commitment to taking them every day, to see the benefits.

Virtual school saved my child's education and got her through high school, even if I had to do half of my child's work for her.

There is a way to do this without having doctors and school officials micromanaging your life, IEP meetings with school officials who start the meeting with "Here's what's going to happen" and an endless cycles of doctor visits that offer no medical relief but only because you have to have forms signed for school. Homeschooling and virtual schooling are options that give you more flexibility and control.

Be very careful with a minor child with a complex illness, when dealing with hospitals or schools. Some children with chronic illnesses such as Fibromyalgia are subject to medical kidnapping. The federal government pays a premium on foster children who have special needs, doctors get research grants to test treatments for complex diseases on children, and the law allows foster children to be enrolled in experimental trials. Some states are padding their budgets with the money paid by the federal government for fostering kids with chronic illness or complex diseases. This creates a financial incentive for medical kidnapping, such as what occurred with Justina Pelletier. Be very careful in dealing with large Children's Hospitals. Don't directly argue with them. Always be diplomatic in extracting yourself and your child, once you have engaged with them. Doctors can retaliate with parents who demand a second opinion or who threaten to move their child to a different hospital by reporting them to CPS. I once had a doctor suggest, after discovering that her theories on how to treat this disease were not producing the improvement that she expected to see (she had littler or no experience with this disease and was still in denial), that we "take the parents out of the equation", and put the child in daytime program of CBT and GET, which could have produced horrible flares and an overall deterioration in her condition. It is known that CFS/ME patients cannot recover from exercise at normal rates of recovery, and continued exercise can cause a deterioration in their condition, and can cause lasting damage. In other countries, this may have caused or contributed to the death of patients, such as Sophia Mirza. Fortunately, we were able to ease out of our relationship with that doctor, diplomatically. Justina Pelletier was not so lucky. Think about who? Who would the doctor rather blame for a failure of the patient to get better? Himself? Or... you?

Civil courts have none of the protections for human rights such as presumption of innocence, high standard of evidence, right to a speedy trial, right to face your accuser, right to a jury trial, right to free speech, etc. None of these rights exist in a CPS trial in a civil court, the way they do in a criminal court. And CPS doesn't even always have to abide by the court orders, anyway. CPS has been known to simply ignore court orders, if it chooses. So, be diplomatic and be careful when dealing with large hospitals or state entities, and consider reducing your involvement with these entities to a minimum. Fortunately for me (unfortunately for her) I learned this through Justina's experience, and not my own.

Those are some of the things I've learned.

What have you learned?
 

remnant

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It is heartening that you have learnt so much about fibromyalgia through your child. This second person approach is what is needed by FM patients in order to detach themselves emotionally from the disease. The information you have given is quite exhaustive including the use of medications. The most common problem facing FM patients is lack of information and an unrealistic approach to the condition. They tend to go into panic mode. I have seen episodes on patients despairing and on the verge of suicide. I look forward to more FM sufferers accessing your post and the other stuff posted by the forum.
 
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