Anyone that knows about pediatric fibro

Discussion in 'Fibromyalgia Main Forum' started by fibrorebel, Apr 24, 2003.

  1. fibrorebel

    fibrorebel New Member

    If I wasn't so wiped out from traveling to a funeral today I would go through the search for past posts on this topic..
    but since I am exhausted as well as brain dead, I wondered what are the typical first symptoms of fibro in a almost 13 yr. old? I have one of those feelings that my youngest son has fibro, though desperately I pray he doesn't. I appreciate any response, I have checked it out in a couple different books but really still didn't find out what to look for. I have found most of my most beneficial info right here so ...I soooooo appreciate you all. love Rebel
  2. fibrorebel

    fibrorebel New Member

    Just bumping this up, desperately need a response.
  3. TNhayley

    TNhayley New Member

    Dr. R. Paul St. Amand and Claudia Craig Marek's book "What Your Doctor May Not Tell You About Pediatric Fibromyalgia". After I read this book the first time I cried, because it really confirmed my suspicions and validated my "intuition" that things are not right. Here's some info from that book, but this is my own summary, mixed with my own opinions ... the book is well worth the price to buy it and, of course, is written by qualified professionals (and it is not expensive).

    Pediatric Fibro is called JPFS (Juvenile Primary Fibromyalgia Syndrome). The ACR (American College of Rheumatology) found differences in adult and pediatric fibro. According to them, children need only have pain in three sites of their body for a period of three months, in addition to five (instead of 11) out of the 18 tender points and three of the minor criteria such as fatigue, anxiety, poor sleep, or IBS. That's about it for the ACR, they have yet to connect the multitude of vague dots that many parents recognize as abnormal. Still, the recognition of JPFS is a step in the right direction.

    There appears to be a 50/50 split in JPFS as far as gender is concerned, meaning there are as many boys as girls that have JPFS, which is not the case for adults. Apparently, something happens in puberty that dramatically changes the gender ratio, possibly testosterone (not known - needs research). That, at least, bodes well for those of us who are wringing our hands over our boys. However, I wouldn't say that it's anything to count on ... and certainly doesn't address the problems they might face as a result of feeling not as energetic as other kids, or not doing as well in school as they might be able or so many of the other *small* challenges they might face as a result of undiagnosed and untreated JPFS.

    As far as symptoms ... here goes my best synopsis.

    From the Central Nervous System: Fussy, irritable, emotional and cranky, apart from how we know our children's personalities to be. Inappropriate sleep patterns, awakening or sleeping at the wrong time ... may rouse repeatedly during the night and crawl into bed with you. Awakening in the middle of the night crying and resist all consoling efforts. Older children might take naps without any urging (a sign of fatigue). Breaking away suddenly from activities that they thouroughly enjoy. Giving up activities because they are too tired. Grades rising and falling as their energy waxes and wanes. ADHD symptoms. Impaired memory, poor concentration and disturbed cognitive faculties, easily distracted or apathetic, easily frustrated ... or as we adults call it, fibrofog. All this often times yo-yo-ing between periods of seeminly normal and these symptoms.

    Musculoskeletal: *Growing pains* typically located in the tissues adjacent to the knees and lower legs. These pains can present at any time ... sleeping or waking. Growing does not cause pain, don't let doctors tell you otherwise ... it is a misnomer. Look for lumps and bumps in their muscles. Restless legs. Headaches. General aches and pains can have a pattern if you are diligent in your observations.

    Irritable Bowel: Frequent abdominal pain, gas and/or burping, claiming their bottoms hurt, holding it because it hurts to go to the bathroom and frequently constipated as a result. Bursts of diarrhea and inadvertant soiling. In younger children unexplained intestinal abnormalities are difficult to distinguish. Terrible colic as babies might be a symptom.

    Genitourinary: Vulvar pain, frequent urinary tract and/or bladder infections or symptoms of infections without an actual infection. Vulvitis or vestibulitis.

    Dermatologic: Strange rashes. Hives, either as isolated lesions or widely dispersed throughout the body. Eczema. Dry scaly rashes near the nose, eyebrows, or scalp. Tiny itchy blisters on fingers or on other unusual parts of the body, sometimes in small clusters.

    Miscellaneous: Gunky eyes ... dry, burning, itchy and generally irritated eyes ... sometimes redness of the whites of the eyes, pungent smelling and/or dark urine, sinus problems and post nasal drip ... chronic sinus congestion, frequent sinus infections, mucus backing up into the middle ear and causing hearing impairment. Much of this will be blamed on allergies by docs. Low grade temperatures accompanied with facial flushing and increased heat to the touch, oftentimes mysteriously clearing without treatment. Asthma. Hay fever.

    There are many periods of time in which children seem normal and periods in which they have various complaints. It seems so vague and anecdotal. As soon as you think you see something wrong ... it seems to disappear and then something else takes it's place. It's hard to imagine trying to explain to a doctor. Another thing that concerns me, beside the obvious physical problems, is what is the cost to our children's psyche if they go undiagnosed and untreated? How much emotional damage (many of us can trace this DD to childhood) could be avoided? Of course, there can be positives to experiencing chronic illness, but we want our children to have as normal a life as they can, and that is not the kind of character building I want my boys to experience. I want my boys to soar and never look back.

    A symptom journal is the best way to try and ascertain patterns to our childrens problems ... and also to help us confirm our suspicions ... or alleviate our concerns. (I do find it hard to maintain faithful entries, I guess due to my own struggles). Either way, I think the more you know and the sooner you know it the better. I am certainly no expert, just a parent struggling with these issues. I hope some of this info helps you, fibrorebel, or anyone else who is struggling.

    (((((hugs)))))
    Hayley
  4. fibrorebel

    fibrorebel New Member

    I so appreciate your taking time to respond to my crisis.
    I have been suspicious all school year, He supposedly had a Mono-type illness in the fall, and is presenting way too many symptoms of the fibro. It is heartbreaking to even think he will someday go through what I have. It is funny that you mentioned Dr.Armand as I have his other book "what your Dr. may not tell you about fibro. on order right now and it should be here anytime. I will gladly check that other book out. Thank you again for all the help!!!
    love, Rebel
  5. layinglow

    layinglow New Member

    The Pediatric Network for Chronic Fatigue Syndrome and Fibro...is a good website. I cannot give you the address here, it is against the rules. If you will go to Yahoo's homepage, and type "The Pediatric Network for Chronic Fatigue" in the search box, and click search.....it will be the first hit you get, on the page that comes up.

    Best wishes, LL
    [This Message was Edited on 04/25/2003]
  6. TNhayley

    TNhayley New Member

    Wow ... that has a LOT of information. Thanks. I'll be spending some time there, too. :) Hayley
  7. fibrorebel

    fibrorebel New Member

    I will most definitely check that out as well. I just really want to do what is best for him,to hopefully keep him from suffering as I do. love Rebel
  8. Cara-Sue

    Cara-Sue New Member

    i have had fm since i can remember.i had trouble getting to sleep at night,had fibro fog,aches and pains and restless leg syndrome.my 2 daughter have it i am sure.i do not say too much about my pain..i know the difference between a mimic and whats real.it was hell when i was younger escpecially the restless leg/and not getting asleep.the dr's dont reconize kids having this but i know i i had it then and now.if you need any more info email me
    take care
  9. momofafibro

    momofafibro New Member


    Hi,
    I've not felt like being on the computer lately so I didn't know this tread was going on. They have already given you the best answers. But I wanted to respond because my daughter started all of this after she had mono apparently. I say that because mono is the only thing that shows up in her blood work. She was never sick before last June, so I would think that must have been when she had the mono. That is also when the rest of this started. The doctors told us that mono can hang on anywhere from 6-12 months. The research I've done seems to indicate if you suffer with the mono that long you have a greater risk of having FMS, CFS, or lupus. Since I have lupus we've kept a really close eye on our daughter to see if developed. So far all of her blood work remains normal. She still has the severe headache that started all of this, but the body pains have let up in the past month. Although she still has the insomnia and fatigue that goes with FMS. Oh I guess I better say that the doctors dx'd her with FMS after 8 months of suffering. I hope that things are getting better or at least that she is coming out of a lonnnngggg flare.
    I say all of that to say all of this CAN start with mono.


    Becca
  10. fibrorebel

    fibrorebel New Member

    you all have given such a good response and i really appreciate you all. My son had a mono-type illness for many months this past fall and just has never seemed like his prior healthy self since. I had mono 20 yrs ago and now have fibro. I am really starting to believe that once Epstein Barr virus infiltates your body it stays dormant until something triggers it to mutate into one of the immune diseases. At any rate, I will check into all of your suggestions.

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