MY 11 YEAR OLD HAS FM - MOM LOOKING TO HEAR FROM OTHER PARENTS

Discussion in 'Fibromyalgia Main Forum' started by judee, Aug 30, 2002.

  1. judee

    judee New Member

    After three years of terrible pain, trips to doctors and the ER Finally my daughter was diagnosed with Fibromayalgia. Right now we are both struggling with her pain, inability to sleep (she was up till the sun came up), and the inability to find medications that don't cause severe headaches. I think we just tried the last hope. Neurotntin. The other main problem we face is that as a result of all her absences the school wants to put her on a special program of only 2 1/2 hours of school a day. I feel like my child is missing out on so much. She has such and eagerness to learn and I am unable to home school. Anybody that has a child with FM, I would like to hear from you; and anyone that can shed some light on these issues I have mentioned.
    Thanks
    Judee
  2. judee

    judee New Member

    After three years of terrible pain, trips to doctors and the ER Finally my daughter was diagnosed with Fibromayalgia. Right now we are both struggling with her pain, inability to sleep (she was up till the sun came up), and the inability to find medications that don't cause severe headaches. I think we just tried the last hope. Neurotntin. The other main problem we face is that as a result of all her absences the school wants to put her on a special program of only 2 1/2 hours of school a day. I feel like my child is missing out on so much. She has such and eagerness to learn and I am unable to home school. Anybody that has a child with FM, I would like to hear from you; and anyone that can shed some light on these issues I have mentioned.
    Thanks
    Judee
  3. Shoobie

    Shoobie New Member

    I am not a mother of a child with FM but did display signs of FM as a child. I had severe "growing pains" that sometimes were so bad I couldn't walk or get out of bed. The doctors told my mother it would go away, however, when I was in my early 20's I was still having these mysterious "growing pains". Alot of people on this board believe to have had FM in their childhood.

    There are still alot of doctors out there that don't even believe in FM. These doctors are severely uneducated. Even the Department of Defense and the Centers for Disease Control are aware of it's existence are involved in testing for this horrible illness and many others that are similar in nature.

    Any idea what brought it out? Was she sick with a flu or did she have an accident of any kind?

    Don't give up your search in finding the right group of doctors for your daughter. There are many uneducated doctors that can be obstacles. Just go around them and continue on your path.

    Take Care.

    -Shoobie
  4. achy

    achy New Member

    http://dizilizi1.homestead.com/page1.html

    I can't imagine being a child with thie DD!!
    Good luck
    Achy
  5. LouiseO

    LouiseO New Member

    I think it is the best. I have a 19 year old with fibro. Now she is preagant and doing fairly well.

    Luv, Louise
  6. pamelasng

    pamelasng New Member

    Dear Judee, I am a 47yr old mum with FM, both our daughters aged 15 and 16 were born with FM we spent years looking for answers to their medical problems, and it tore us apart we knew we had to do something when around the age of nine the eldest started talking of wanting to die. I was diagnosed with FM after an accident and a myelogram before they were born around 1984,anyway it it so hard trying to manage my own pain and problems and care for the physical and emotional needs of my girls. I have had to homeschool them for years untill last year they asked to attend the local high school to meet other kids, we went to the high school to explain everything, gave them a handbook on kids with FM and the promised to do all they could to help them.We have had help from only two of the teachers in the 16 year olds classes,Jessica comes home crying a lot but as this is her school certificate year refuses to give in. I get really angry that my children suffer physical pain as well as emotional pain because people wish to remain ignorant about FM. Both our girls have had pain management classes and are now on antidepresants to help manage the pain. We are concererned about their future but cant seem to find anyone to ask for help.We have decided to write a book on Fibroyalgia in families so if you would like to tell us what you have been through so far it would help us a lot. We really hope things work out for you. Regards pamela, Jessica,and Melissa.
  7. judee

    judee New Member

    It's nice to finally be in contact with someone that has a child with this illness. I don't know how you are managing. I know that I feel like I am at the end of my rope with just one child with FM. I don't know what your support system is like but in my situation I come from a close family; but they don't fully grasp the level of pain and symptoms yet. They live an hour and a half away so basically I feel like it's she and I against the world. Although it may not be what I wanted to hear I appreciate you telling me what might be ahead. I have had concerns about her future in regard to education and a career. How do you home school? I unfortunately do not have the education behind me to do it and I can't afford to pay anyone. Do you know if I can get assistance with that. I don't think my daughter should miss out on all her subjects. They are only giving her math, reading/english. My prayers are with you, don't give up! The only thing I know that has helped is physical therapy. She just went to a top hospital where the physician devotes his work to kids with FM. He said no matter how much pain she is in, to do aerobics at least 10 minutes a day. Biofeedback, acupuncture and massage therapy were also perscribed but the health insurer won't pay for those treatments.

    Judee
  8. pamelasng

    pamelasng New Member

    Judee, Im sorry I didnt mean to make you feel bad, I often felt it was just us against the world, but there are ways to get around it and people to help, we made contact with our state arthritis support group in Sydney and they were fantastic, They gave our girls a lap top computer each to help them with there school work, and they provide support such as camp footloose for kids with arthritic type conditions. Home schooling is not as hard as it seems, but with the help of a specialist you can apply for distance education were their lessons are sent to them and you just send them back, they also have backup support by phone or net, anyway its worth trying maybe you could call the education department and ask, but dont give up if you get onto someone who wont help just go to a different department.Above all eles just take each day as it comes I have to tell myself that all the time, but it gets me through. My email is pamelasng@aol.com.au if you need to talk or I can help with anything. Im in Australia. Regards Pamela
  9. glendamarie22

    glendamarie22 New Member



    I also have had Fibromyalgia since I was about 11 years old - I'm now 22. I had to quit school in the middle of the eighth grade and get a GED when I was 17. I tried to work and go to college several times in the years that followed, but eventually had to just stop and stay home. I wanted to reply to you, not because I have any great advice to give you, but I wanted to let you know what a help you will be to your daughter by understanding her condition and just being there for her. My mother has been absolutely wonderful. I still live at home and she does EVERYTHING for me, since a lot of times I am not even able to drive or get dressed by myself. There are so many doctors - and soemtimes even friends - who will discourage you by saying you're depressed, you need to "try harder," ect. My mom is the only one who thoroughly believes in me and understands what I go through with this illness. Knowing that keeps me sane. Sorry I don't have more practical advice, but just BE THERE for your daughter. She is in my prayers.
    ~Glenda
  10. BlueMoon

    BlueMoon New Member

    Hi Judee,
    I am 42 & have had FM for 20+ years. My oldest girl who is now 19, got it at the age of 10. She will not do any treatment for it. She says she will just muddle through. When it's really bad, the best thing is a hot bath to releave all the tention from her body. Have her take a hot bath right before bed with a cup of hot whole milk, (goats milk is the best for you)she can put something in it to make it tast better , but not chocolate, it has caffine & will keep her up. If she really can't sleep & seems to have a lot of joint pain I always gave My kids Benadyl. It will help her sleep. After all that she should get some sleep to help her feel less acky. That is the only thing My daughter will do. She does not like to take any meds.
    When She was in a bad flare, we did home school her. Tried to keep her at school as much as possable. She rather had been there too. Now she is in college & when she flares she just pushes on, she is a trooper, always has been.
    Now my youngest girl had migraines from the age of 6 years old. Along with being latose intolernt. She was home school more then my oldest. Very hard to go to school & concentrate when your head is pounding.
    She may miss out some, but will grow up a bit faster when forced to deal with this all.

    Good luck & keep strong for her,
    Robin
  11. dlizard

    dlizard New Member

    I'm one of those people LOL> that had FM as a child. I'm 41 and was just diagnosed this year!!!!! Despite being a nurse and going to the doctor regularly LOL>>>>> says alot about our healthcare system huh....I was totally discredited as a child with these complaints from my parents to my family doctor until all of a sudden ( to them) I had a hemoglobin of 2 ( this is not life compatible)... I think its important to get these kids to people that understand them!! I also want to tell you about a program at Voc Rehab for kids... it seems that they will take on kids with problems so that they might be able to find employment one day doing something that they can do*.... I noticed quite a few like high school age kids at our facility this summer. Not only can they help by increasing our child's activity and offering their own FREE PT!!! but the planning for someone at their age would be fabulous.... they would have an opportunity to meet other kids with problems and all of this is free! They under some circumstnces pay for meds and other needed medical supplies... sometimes they will pay for treatments and drugs too but this program has stricter rules! I also think you need to remind them that there is a world out there that is hostile but they will meet people along the way that will love them and help them. I wish someone had helped me when I was a kid with this... It's hard cause you can't do what everyone else is doing cause it hurts so bad or you pay for it later.. The only other thing I want to share is to tell your kids not to give up... there are good days and bad days and I've even had some good years!!! But for the life of me I feel like this disease DOES in fact progress... I've never had the memory stuff til this year... I've been an RN for 20 years and worked hard most of that with the exception of a 4 yr disability in the 80-'s... keep encouraging your kids to dream and grow up... do you have any support groups in your area? This could be a place for them to SEE what is up with them,,, and get to know others that share this disease in a hope that they too may find some peace with this battle. I suppose I'm glad I was never diagnosed with FM before I was an adult. I wonder if knowing about it would have made a difference when I was making career choices and all. It certainly woulda NOT been healthcare LOL LOL>>>> I'm still wondering why the word care is hooked up to the word health LOL>>>>> Best wishes to you honey, you have your work cut out!!!
  12. judee

    judee New Member

    I can't tell you how much your letter touched me. So much of what you said is ringing so true in our lives. My daughter has developed a lot of fears, maninly one of losing me because she says I am the only one that understands her illness. Actually I am. I get so frusterated when she cries everynight when she goes to bed because there is nothing I can do. Unfortunately she wants my comfort 24/7 and has been sleeping in my bed. This causes me less sleep and I get irritable at times. I just don't know what to do. The doctors tell me that she has to stay in her bed and learn to deal with the pain and lack of sleep, so that I may get my rest. This is easier said then done. I end up feeling guilty when I am so tired and she is crying in bed and can't sleep. DId this ever happen to you? What did your mom do? I mean how did she meet your needs but take care of hers too?? My e-mail is jhmleh@earthlink.net. Thanks for your prayers, we will pray for you as well.
    Judee