Children with Fibro

Discussion in 'Fibromyalgia Main Forum' started by SherrieTeacup, Feb 4, 2006.

  1. SherrieTeacup

    SherrieTeacup New Member

    I would like to know if there are any kids on here with fibro. they think my granddaughter has it. Please reply and let me know how you were tested for it. And how do the doctors treat You for it
    Sherrie
  2. Shannonsparkles

    Shannonsparkles New Member

    I would also like to know if any of our members here were diagnosed in childhood?
    (((hugs))) Shannon
  3. smiffy79

    smiffy79 New Member

    shannon i love that one :) i was diagnosed as having 'rough cartlidge' what a crock of crap huh? good ol drs
    i was 10 when they come up with that little jewel[This Message was Edited on 02/05/2006]
  4. SherrieTeacup

    SherrieTeacup New Member

    My Granddaughter is 14 she has been to the emergery room two times in 3 weeks for pain of course nothing shows up.
  5. Hope4Sofia

    Hope4Sofia New Member

    My daughter has symptoms of Candida. I'm looking into it.

    Sofia
  6. Sheila1366

    Sheila1366 New Member

    It was a really tough time for us and especially her.When she turned 12 she became really tired.She started her period then and had just finished the 3 shots for hepatitis that was given out at school.

    She started having near fainting spells.We checked her blood pressure in 3 different positons...laying sitting and standing.All 3 times her pressure was very low.Finally our peds. dr. sent her to a cardiologist at Duke.

    He did this test called a tilt table study.That is where you are strappd to a table and they gradually lift you up right to see why and when the blood pressure drops so low.

    Knowing what I know now we never would have let them do that.It terrified her.Her blood pressure got down to 55 over 25.Very dangerous.Dr. said the lowest he had never seen.SHe never blacked out.Dr. said he never seem someone fight so hard not to faint.

    During the test he did find that the right side of her heart was larger.We then had to have an echo cardiogram.Dr. said she may have a hole in her heart.Thank God there was no hole just one of those things that happen to some people for no reason.

    He sent us home giving her meds. to elevate blood pressure,was told to increase fluids,when she went to school she would need someone with her at all times incase she faints.

    That was not working at all.We ended up homescholing her due to her severe fatigue.

    Not long after that she started hurting in her neck and especially in her wrists.

    Called cardio. and he sent us to a reheumy. at Duke.

    This woman was a real bitty.SHe chewed me out for homeschooling my daughter.SHe did say she had FM/CFS but she needed to be in school no matter what.

    My daughters pain kept getting worse and we needed help with school.We tried putting her back in school.

    We asked the reheumy. to write a note to the principal to ask for special help with her school work.Well the old bitty wouldn't do such a thing.

    We called the cardio. and he said it was silly that she wouldn't write a note and he wrote one for us even though he was not a reheumy.

    Looking back on when she was much younger she would complain about hurting and feeling bad.And I would think how could she be feeling the same way that I did.

    I had our water checked,called hazerdous waste department in our city to check on our location.

    We have had several cases of cancer break outs in a small cluster of homes in my neighborhood.

    I checked for lead in our home.Everything I could think of to explain how my daughter could feel as bad as I did.She was so young.I still wonder if the shots for hepatitis did something along with her starting her period at the same time.

    My daughter has been in touch with other young girls that have FM/CFS.It does happen.And if we think about it we all probably had symptoms when we were younger.

    My daughter is going to an endochronolgist soon.Our reheumy. thinks the vasovagul(near fainting spells) are possibly something that has to do with a gland problem.

    When my daughter was checked for FM/CFS she had pain in almost all the pressure points.I sat there and watched this poor girl just crenge in pain when the dr. applied pressure to these places.It was very obvious she had FM.At that point Ihad never heard of it.

    One word of advice.When it comes to dealing with the school you need to get as much information as you can.

    The school system is aware of students having FM/CFS.We had a meeting at the school trying to come up with a plan to help my daughter.

    The school nurse called me at home and had me meet her secretly so she could give me information the school was not giving me regarding how to take care of a chld with FM/CFS.The school was being a real butt about it.

    This was 8 years ago.I ended up homeschooling her her senior year which was very hard for her.

    As a matter of fact I homeschool my youngest too due to her disability and the lack of understanding by those in charge of the special needs placement in our area.

    Those days of fighting for my girls was some of the worst days of my life.When you have to keep explaining over and over what your child suffers from and the help they need ,you just get to the point where you just hate the school system.

    Best of luck to you and yor grandaughter.Be sure she gets the best testing out there.And whatever you do,fight for her right to get a proper education from the school system.

    Sheila
    [This Message was Edited on 02/05/2006]
  7. LClancy

    LClancy New Member

    I got FMS when I was 17. Unfortunately I gave it to at least 2 of my kids.

    Lisa
  8. saphire27

    saphire27 New Member

    My 5 yr old son is having pain in his legs & knees, He complains of it alot. I even rub him, sometimes a late night hot bath, and a heating pad. It happens very often. Doctor told me it was probally just growing pains, since it seems to only happen at night. My 6 year old girl has those leg cramping pains too, but not as often as my 5 year old. I'm sooooo worried. Can anyone help me here?
    love saph

    bump
  9. Hope4Sofia

    Hope4Sofia New Member

    I don't know what to tell you but I'm worried for my daughter as well. I'm thinking this is all related to candida. I'm checking it out further this week. I'd love to hear from you if you learn anything new.

    Sofia
  10. redsox10

    redsox10 New Member

    Sherrie, Have you or your grandaughter been tested for Lyme Disease? I would get tested at Igenex to get this ruled out.

  11. Shannonsparkles

    Shannonsparkles New Member

    Just remembered that when little, before age 6 say, my catchphrase was, "I'm so TIREDDDDDD!" Used to put such feeling into it that grownups thought it was hilarious.

    I got mono at age 13, but even before that, I couldn't keep up with the other kids. I could not run without losing my breath and aching the next day. Sick all the time. It was in childhood that I got metal poisoning from my town's water, and also the tick bacteria. Terrible headaches starting before the age of 6. I remember lying in bed with my momma and waiting for the pain to go away.

    Wish I could scoop up my young self and get her to a doctor asap.
  12. SherrieTeacup

    SherrieTeacup New Member

    Sheila,
    Thank You so much for your info and advice.
    Sherrie
  13. SherrieTeacup

    SherrieTeacup New Member

    I have my granddaughter has not.
    Sherrie
  14. SherrieTeacup

    SherrieTeacup New Member

    thank You for your kindness
  15. SherrieTeacup

    SherrieTeacup New Member

    What is Candida?
    Sherrie
  16. Cromwell

    Cromwell New Member

    ... it is quite common with autism, plus he has hypermobility. He was dx'd with JRA at one pint but we know now it is FM.

    I keep on at PE teacher not to push him too hard, as he does not know how to say "stop it is hurting," he may say something else instead, like, "Maybe my shirt won't fit tomorrow" to try and communicate he is feeling the pain(his logic being that sore muscles will be swollen and thus shirt won't fit).

    I must have written four letters this year to Adaptive PE teacher who ignores them all.

    I wonder if the other kids all have hypermbility?

    Love Anne
  17. Shannonsparkles

    Shannonsparkles New Member

    Candida is a fungus that lives in the digestive tract. Normally it isn't a problem. However, stress, illness, and poor diet can cause it to proliferate. With candida overgrowth, you get symptoms such as depression, leaky gut, spaciness, fatigue, yeast infections... Treatment involves a diet low in carbs (the fungus thrives on sweet stuff) and antifungal herbs or drugs.
  18. lease79

    lease79 New Member

    I wasn't diagnosed, but I developed the symptoms around 11. By 16 it was full blown.
    I have a feeling that my 8 year old is pre-disposed to it & that if she doesn't have it now, that there is a chance that she will develop it.
    The other two girls, no signs at all, & the scary thing about that is that the 8 year old is my spitting image, the other two girls are just like their Dad, body shape, skin type etc...
    We don't talk about it & she is active & normal for an 8 year old, but she is having alot of fibro symptoms physical & mental. If she really starts having trouble, then I will get her checked out.
  19. elastigirl

    elastigirl New Member

    ... he seems to be exihibiting all the signs of a weak immune system I had at as a child: bronchiolitis, pneuminitus, bronchitis, even strangeness about his legs (sometimes one skews out for no reason,) the odd pains that makes no sense.

    Praying for a cure everyday.