Pediatric Fibromyalgia- Juvenile Fibromyalgia

Juvenile Fibromyalgia (Pediatric Fibromyalgia)

* Please note-- I don't sell anything. *

This is the story of my son Alex, who is now 7 years old. He was diagnosed with fibromyalgia at age four by Dr. R. Paul St. Amand in Marina del Ray, California.

He has shown symptoms of the disease since he was a baby. He had such severe bruxism (jaw grinding) that the sound who keep my husband and I up at night. Bruxism is a sign of severe muscle tension in the head and neck area.

Once my son became verbal, he began complaining of pain his his mid-back. When the water was running in the bath tub, he would scoot himself around so the hot water could run directly on his spine, soothing this spot.

At age three, he also began complaining of pains in the bottom of his feet. His pediatrician theorized he was "flat-footed" and sent him to a foot and ankle specialist. The foot and ankle specialist said he was not flat-footed, but made him orthopedics anyway. (Hey, why not, they cost the parent $500...) My son wouldn't wear them as they made his feet hurt worse...

By age four, when my son started getting severe headaches, and signs of IBS, I told my husband we couldn't ignore this any longer and pretend our son hadn't "gotten the gene." I think the hardest part was for my husband to accept the idea that his son had the same lousy disease that made his wife, well, difficult to be around at times. Now, he'd have to put up with two of us in the house?!

I bought my husband Dr. St. Amand's book on "Pediatric Fibromyalgia" and asked him to decide for himself if the symptoms in the book sounded like our son. After reading the book, my husband said: "Well, when should we make the appointment?"

It's a 1,200 mile round trip drive for us to see Dr. St. Amand, but he is one of the few people who can diagnose fibromyalgia in children.

In the three years since then, though, I've hard that the concept of "fibromyalgia in children" is finally gaining hold in the medical community. Since it is now been accepted that fibromyalgia is a genetic disease, doctors realize that the disease does not magically * POOF * appear in adults. If you have the gene for the disease, then you are BORN with the gene for the disease.

If you read the comments below this video, you will read that UCLA is now diagnosing Pediatric Fibromyalgia, and there are cases being diagnosed as far away as Israel.

Now, I live in the San Francisco Bay area and I have not told my own pediatrician that Alex has been diagnosed with Juvenile Fibromyalgia. I am TERRIFIED to do so. Why? Well, because, I don't think it was something he was taught in medical school, and unless he has attended a medical seminar on the subject, I think he will look at me like I'm crazy. There are so many misconceptions about fibromyalgia, I think it would be a wasted effort. Until the blood test is available to "prove" and document the disease, (and thankfully, the blood test is in the testing stages,) my local pediatrician has no professional advice he could offer to help with my son's fibromyalgia. I just don't think they train and educate pediatricians about this disease in children. (I hope somebody out there can prove me wrong. I would love to be wrong about this.)

Until then, we'll continue to make that 6-hour drive and take our son to a specialist who does understand this disease.

How is my son doing now? Awesome. He is an accelerated program at school, and pulling fantastic grades. He loves going to school, and his teachers say he "loves to learn." He loves it so much that he asks his teachers for even more challenging work. When he's not in school, he's running around with all the kids in the neighborhood, riding bikes, and playing baseball and kickball, just like any other 7-year old boy.

My husband looks at him and says: "I want HIS childhood!"

And, yes, he still takes his medication twice a day. We don't have to remind him-- he does it on his own.

Category:

Education

Tags:

• fibromyalgia
• fibro
• chronic
• fatigue
• Pediatric
• Fibromyalgia
• Juvenile
• Guaifenesin
• Protocol
• Guai
• Dr. Paul St. Amand
• Chronic
• Fatigue
• Syndrome
• (CFS)
• (FMS)

[dianacwolf]

Yes, I know of the study you are referring to, but studies can be flawed. Think of the flawed study showing that the Mumps-Measles-Rubella vaccine causes autism? How many parents chose not to vaccinate their child for those diseases out of fear of autism? Now, those diseases are actually making a comeback. Turns out that particular doctor was looking to gain notoriety. He accomplished that, all right. Thank you for thoughts and comments. Regards, Diana

[justmeinthisworld09]

Sorry to tell you this, but the Guai protocol has been proven to be quackery. The drug itself does nothing for FMS, its possible it is something other than FMS or he is getting relief from the placebo effect..feel free to research it yourself..

[dianacwolf]

@justmeinthisworld09 I forgot to ask what your interest in fibromyalgia was. Are you doing your research for yourself? A family member? If you are looking for a particular piece of information, I can probably help you out. Thanks to my videos, I've been in contact with thousands of other people with fibromyalgia over the past seven years. I have learned so much, and I share what I learn. There are many, many other good treatments beyond Guai. Both my son and I do other things beyond Guai.

[sgoodell4]

This video helps give me hope that one day I will find a caring doctor that will take her symptoms seriously and I can finally help my poor little girl. All I want is for her to able to play like the other kids without it causing her pain or illness. I wish to longer see the pain and saddness in her eyes and the defeat when she finally gives up and just lays down (sometimes in the middle of crowded play area).

[dianacwolf]

I'm glad the video was helpful to you. Dr. St. Amand, (the doctor my son and I see in southern California), always says Moms should listen to their instincts. It sounds like your instincts are speaking to you strongly. There is a Pediatric Fibromyalgia Support Group on Yahoo groups. I'll email you the link offline. A lot of good resources there for parents. I'll email you the link. My son was four when he was diagnosed. Today, he is doing really well. Hang in there. - Diana

[ddtoots]

i feel so upset. on a website i am on, there is a post about a man who thinks his exwfie is needlessly "druging" their daughter. who was diagnosed with fibro.

he thinks its jsut for attnetion and everyone agrees.they say 16 is too young to have fibro. taht it doesnt exist. what is up with these kinds of idiots! i feel so upset.

[dianacwolf]

Hi ddtoots, Thanks for writing. Fibro is such a difficult disease, since we don't have a blood test yet to "prove" our disease. (A blood test is in the works thanks to the successful City of Hope tests in Los Angeles.) My own brother has said: "I'm not sure I believe in fibromyalgia." Like it's the Easter Bunny, or Santa Claus. Dr. St. Amand told me to trust in your parental instincts, and do what you think is right for your child. A Mom knows when their child is hurting. - Diana

[FibroCanada]

Hi Diana. I just started on Guai 11/11 after seeing DrSA at FTC. I believe it is working! Since then, I have been wondering about my daughter, so I did a search on Pediatric Fibromyalgia and your video of your son came up. Olivia is 4, and we are thinking about starting her on the Guai Protocol. Everything adds up. Can I ask, how did you get your 4 year-old son to swallow those big pills?

Thank you Diana, for all of your time and energy spent educating those suffering out there.

[TheDBZGTFan]

@brianaquince15

how do u get lyme disease diagnosed, through what test? and from which specialist?

i hope ur sun can get or is well adapting to everyday life cuz if i try to tell the enormous pain which at least i experience through the whole body, i cant even think how to start, only i and the xperienced patients cud probably know what hes going thru.. i just read in the future wit improvd cell terapy theyll probably treat fibromyalgia completely, im not sayin its tru 100% dont 4get to answer

[brianaquince15]

@TheDBZGTFan I do hope it helps you get some relief. Make sure you are tested for Lyme Disease was well. My son and I both found out we had Lyme Disease, that is to day, our fibromyalgia was triggered by Lyme Disease. Be aware that Lyme testing is tricky. You can have a negative result on a blood test, and still have the disease. It is a very complex disease, and the symptoms mimic fibromyalgia exactly. However, Lyme Disease is curable, whereas fibromyalgia is not.

[TheDBZGTFan]

im a fibromyalgic patient, 18 years old just started taking guaifenessin, now taking it for 14 days, no effects at all, i hope it'll help me after a while taking it, the disease is really painful i can't stand it, can't imagine the future wit it, i got it when i was 17, im puttin all my hope to guaifenessin, as i noticed i got fybromyalgia right after my nervous breakdown

[avipp1]

My 14 year-old-daughter was recently diagnosed with fibro/chronic fatigue. I've had it for 15 years myself. I've been thru the guai protocol and still take the Mucinex every day as a maintenance dose. It did help me a great deal. This boy is very encouraging! My daughter has an attitude just like him. I'm so proud of her.

[surfercouple]

@xjaimiex1995x HI XJamie- So sorry to hear of the rough time you've been going through. It's an awful thing to be 16, and sick. Especially since so much of your childhood has been plagued by pain. Doesn't seem fair. Just recently I've been learning that fibro can be triggered by Lyme Disease, and the Lyme tests are so flawed as to be useless. Both Alex and I have tested negative for Lyme.I have started both of us on Lyme treatment since symptoms are identical to fibro. Something to consider.

[surfercouple]

It's cool that you went into remission. Did it just happen on its' own, or was there anything you did that helped make you feel better?

[niseynisey]

Thank you for sharing his story! I was diagnosed with Fibromyalgia at the age of 14 and went through pretty much the same things as Alex. i hope his story brings comfort to those who are dealing with this disease today, as it brought comfort to me and I've been in remission for 10 years. **hugs** :)

[xjaimiex1995x]

He is so luckey to have such an early diagnosis. I am 16 and have extreme pain all over my body since i was 5. I have been at Sickkids in toronto Canada since i was 8. and they are just now starting to figre this out. good luck to Alex and your family :)