Pediatric Fibromyalgia- A Seven Year Old Talks About Pediatric Fibromyalgia

[myapiea]

wow your a real crock of shit, your 7yrs old son has it too, all genetic testing ever done for fibro show no genetic precourser for passing it on to children. Now you have your son who's just gowing through growing pains thinking he has this horrible illness for the rest of his like. You are awful!

[dianacwolf]

@myapiea I respect your right to your opinion, of course. A blood test is in the works in Los Angeles which will allow doctors to definitely test for fibromyalgia. So, just like doctors can screen for other diseases using laboratory bloodwork, they will be able to screen both children and adults for fibromyalgia. This breakthrough was made possible by isolating the gene that causes fibromyalgia. The blood test is currently going through the approval process. Thanks for writing. - Diana

[nevyn1]

hi,

I have some questions about youre awesome kid, i hope you do not mind but battling with fibro myself for some time i wondered if some things add up.

As a baby I was quite stiff, while other infants can suck on their big toe i could not be bent over 90 degrees (turning on the hip) also my mother while pregnant of me suffered quite some mental stress. I recognize so much in your boy that i started wondering if he to was exposed in the womb to higher than normal stress and was born 'stiff'

[surfercouple]

@nevyn1 Hi Nevyn! Great questions! I do believe that Alex has had fibro since birth, and before, just like you, meaning he also had it, basically, in utero. We're currently taking part in a ground-breaking study down in Los Angeles which will prove once and for all that fibromyalgia is both genetic and hereditary. (My husband, son and my myself all provided DNA samples for the study which would show I have it, Alex has it and my hubby does not have it,)  Anyway, in answer to your questions,

[surfercouple]

@surfercouple (response to nevyn), I can't remember being under a lot of stress while pregnant.  I had a great job which I enjoyed, and I have a terrific marriage with my husband, the only thing negative in my life is the fibro. I did cut my work hours back when I found out was pregnant, (from 40 hours a week to 30.) In utero, Alex was constantly moving. Never stayed still. He flipped around right before birth, and came out transverse and posterior, (wrong way.) he's a happy kid, though. -D.

[Guai4life]

Glad to hear that hes taking long acting! maybe he has Hg??? just a idea

[Guai4life]

sorry late reply i have been on hoilday which guai is he on? if its Fa then he would only be getting it in hes body for 8 hours and he needs it for 24 hours! just an idea

[dianacwolf]

No problem. Been traveling myself. No. We tried the FA the first year, and it didn't work. Then we tried different doses. Finally he responded at 600 mg. Long Acting, which is what I am on. With Guai, it seems the genetic rule of "what works for the parent, works for the child" applies. Well, at least it did for Alex and I. Would be interesting to hear other people's experiences on the same. Wish I knew more people locally who had kids who had also had fibromyalgia like my son.

[Guai4life]

i think that an Low carbohydrate diet would help the Hg diet has helped my fms pain so much!!

[dianacwolf]

We're going to try a low carb thing with him now anyway, as his dentist suggested it. Like many FMSers, Alex has terrible dental problems. He has already maxxed out his dental coverage for the year and it is only July! Problem might be not producing enough saliva, which then causes tartar, then causing cavities. Dentist said giving up dry cereals, crackers, breads, etc. would help save his teeth/gums and avoid future root canals. He needs to avoid 'dry' foods that 'stick' to the teeth.

[Guai4life]

oh man that really sucks! not easy! at all have you talked with Claudia Marek about this? she would tell you if we would still flare up if we are truely Reversed of the Guai

i have talked with a few fms suffers who have fully Reverse there fms on the Guai and they never flare up

[dianacwolf]

That's a very good idea. I was kind of thinking that. Since he is 7 years old, (almost 8), well, maybe if he's had fibromyalgia since birth, (even though I didn't notice symptoms until he was two), perhaps the cycling is not "done." It is just not as noticeable. Especially since we live in a place blessed with such a dry, hot, temperate climate like California. We only get rain 3 months a year, usually, and then perfect weather the rest of the time. Maybe that's it. It's a good idea.

[Guai4life]

Hes fully Reserved on the guai but does he still flare up?? as u said he gets pain sometimes? the cold weather still flares him up?

[dianacwolf]

Yeah, that part doesn't make sense to me either. There are parts of fibromyalgia that I just don't understand. And, I just DREAD the wintertime because I get a phone call from the school pretty much everyday saying that Alex is in the nurse's office. So, while we have seen a huge change in him for the rest for the year, he still has weather-related flare-ups, and those are really painful for him. I might take him to Stanford this winter. I don't know. Not sure. Try gluten-free. Just dunno.

[dianacwolf]

I meant, I might try a gluten-free diet on him next. I'm just not sure what I am going to add next to his regimen for the weather-related flare-ups because I am totally perplexed as to what to do for him in the wintertime. Any ideas? Could totally use some ideas from other Moms...

[thornekatt]

He sure is a cutie...and has a great outlook!

[dianacwolf]

Thanks! He was diagnosed with Pediatric Fibromyalgia over three and a half years ago, which is almost half his life. So, he is very familiar with fibro. First six months after he was diagnosed, we did nothing. Just monitored him, but he got worse. After that, we started him on Fast Acting Guai, but, it didn't really work. We were crushing it up and putting it in chocolate milk. (Alex briefly references this "crushing up" in the video.) Now, he is on "Long Acting," and, he's much better.