Need Help For Daughter

Discussion in 'Fibromyalgia Main Forum' started by Hippo, Aug 1, 2003.

  1. Hippo

    Hippo New Member

    Hello, I may have mentioned before that my 14-year-old daughter seems to have come down with CFS just like her Mom. This is devastating, but what makes it worse is that no one seems to believe her. Even my own sister, who has been a staunch supporter of ME for the last 20 years, doesn't believe my daughter is really sick. Friends and neighbors scoff at the idea that someone so young could be so sick and insist that I "force" her to act normally!! Three people in a row attacked me verbally on this subject yesterday, and I am really feeling beaten down. Any advice? Thanks.

  2. Julygal

    Julygal New Member

    Hi Hippo, people can be so insensitive and downright ignorant about our chronic illnesses! I've experienced frustration and hurt from even relatives that wonder why I don't "get it together"& act "normal". But for it to be a child or young person involved...that's so much worse!
    I'll be praying that first of all, 1)those being so judgmental will realize that FMS, CFS, etc. is not so selective as to age because it isn't; 2)that you & your daughter will be able to find peace of mind and SUPPORT from others, that does mean so much; 3) and most importantly that your daughter will be able to receive medical help from an understanding doctor that can guide her through all that occurs with CFS.
    I empathize with you & your daughter, & will definitely keep you in my prayers.
    God bless,
  3. JoyJoyBinks

    JoyJoyBinks New Member

    I'm 14 years old and I've had Fibro since I was 12, I wasn't diagnosised until I was 13. I got so much ridicule from peers and teachers and doctors. They just didn't believe that I was really experiencing pain on this level at my age. Luckly, with the help from some wonderful doctors, I was finally diagnosed and it was a little more believable to some people, but there still are those that don't think that it's real, and you just have to hold your head up and not let them bother you. As long as you know it's real and you understand it, you shouldn't let these ignorant people bug you with their crude remarks because if you let it get to you, it just makes you feel worse. I'm praying for you and your daughter! God bless you!
  4. kgg

    kgg New Member

    My family has basically ignored my son for 16 yrs because he isn't a super star like the rest of the family. Who has the energy to be a super star with this DD? I have only had one doctor treat him with kindness and validate that he has something besides depression. And even he is limited in how he wants to help him.

    I even had one friend suggest that he struggles with fatigue because he is copying me! I have become his advocate and I am teaching him how to advocate for himself in this broken system. Especially what kind of physician not to waste his time and money on.

    I also do not discuss his health or life with family and friends anymore. I get tired of justifying and defending. When they make unsupportive and judgemental comments, I don't respond. The conversation changes quickly. The art of biting my tongue. . .

    Know that you are not alone. It is hard to see our teens not have a normal life. Hugs and prayers to you and yours.

  5. Hippo

    Hippo New Member

    I am so grateful to everyone who responded; very impressed with you, JoyJoyBinks, you sound wise beyond your years. Thank you so much to everyone for the words of support and the prayers. I am going to read your replies to my daughter when she comes home.

  6. Mikie

    Mikie Moderator

    I don't give a sou what people think about me, but if someone were to verbally attack my child, it would bring out the mama bear in me in a heartbeat and they would see anger the likes of which they probably had never seen before.

    How DARE they allow their ignorance to add insult to injury on a child who suffers greatly from an illness. Just because it doesn't show doesn't mean it doesn't exist. These poor kids are trying to be as normal as possible and don't need someone trying to beat them back down. Being physically sick is bad enough, but these people suffer from an ugliness of the spirit which is far worse. I would pity them if they weren't so hurtful to children.

    I say that I greatly admire those of you who bite your tongues, but I believe these stupid people need someone to make them face their ugliness. Silence just allows them to feel that they can continue. Of course, going off on them probably would make them feel justified in believing that these illnesses are mental. Perhaps dealing with them without the children present and calmly telling them how awful and hurtful their remarks are to the children would help. If not, it may be time for the kids to learn that there are sick toxic people in the world and we need to get them out of our lives.

    I really feel for all y'all who have sick kids. Mine didn't get really sick until they were adults.

    Love, Mikie
  7. scottabir

    scottabir New Member

    I started showing symptoms when I was 13 and by the time I was 17 I felt like I was going to die. My father (whom I lived with) didn't believe me, my brother didn't believe me, my friends didn't believe me, my teachers didn't believe me, and my employers didn't believe me. Every day I was told I was lazy, depressed, or just wanted attention. I lost all of my friends because while they were out having fun and living normal lives, I was at home in bed. I was finally diagnosed at 19. However, by than most of everyone had already formed their own decisions about me that they still didn't believe me. For the next couple years I would be so depressed because hardly anyone believed me. Finally one day I told myself that it doesn't matter what they think. God and I are the only ones who need to the truth. With God anything is possible and that tie I decided that no matter what, I was going to get better. It has now been a year since than. I have seen many Drs. all of which have told me I am too young to be "that" sick and I have a "psychosis" which causes me to think I am sick. Just when I was about to give up again God brought me to a wonderful chiropractor. In the last couple months of being treated I have felt better than I have since I was 17. I guess what I am saying...we don't have any control over what other people think. They are going to think whatever they want no matter what we do or say. We have to strap up our boots real tight and say no matter who or what tries to bring me down I will get through this and there will be an end. For the first time in my life I don't care what people think or say (including drs.) and I think that is part of the reason I am feeling so much better, it is stress taken off my shoulders. I hope and pray you and your daughter find relief from this dd.

  8. Mikie

    Mikie Moderator

    I am glad you have developed the thick skin which we all need to do at such an early age. It shouldn't be like this for our young people, but it's a fact of our illnesses. You are wise beyond your years when you say that once you don't care what others think, it lifts the stress off your shoulders.

    Strong faith also helps because other than God, sometimes we feel awfully alone. At least, this is a place where everyone understands and cares.

    I don't mind for myself, but it really angers me when people are cruel to children.

    Love, Mikie
  9. kgg

    kgg New Member

    I'm reading Chronic Fatigue Syndrome, Fibromyalgia and Other Invisible Illnesses, by Katrina Berne. Here's the quote under the paragraph on "when they don't understand":

    "Never try to teach a pig to sing. It's a waste of your time and it annoys the pig" -Unknown.
  10. Hippo

    Hippo New Member

    Since I last posted, my next-door neighbor, who ripped me a new a$$hole (can I say that?) last night has apologized. I think I will steer clear of her as much as possible. She is a hot-head and really has no idea what it is like to have this illness and also to be parenting a child with the same condition. She and her children have been blessed with good health and just has no tolerance for people like us. She has to assume that it is some kind of a "bad attitude" problem.

    [This Message was Edited on 08/01/2003]
  11. AnnG

    AnnG New Member 17 and is in pain everyday. I can tell when its him coming down the stairs in the morning because its sort of like a controlled fall! He tries to relieve the pain in his joints by not bending them. When he realizes that he has forgotten something upstairs, he stands at the bottom and takes a deep breath before he pulls himself up by the handrail. He is 6'5" tall and so people expect him to be very athletic. They don't know how to react when he tells them,"No, I don't play basketball."

    I too, have pulled him from regular school and he is in a homeschool program. Its more work for me but so worth it!

    The doctors we have seen love to tell him he has "growing pains". Although I know he has at least FM, I refuse to put him through the ordeal of getting a diagnosis. Instead, I teach him the coping mechanisms I have learned and give him herbal supplements. I myself, am tired of the know-it-alls and "well-meaning" advice. I won't expose him to that. He can make his own decision when he is older.

    How sad that we have to protect our kids from even those close to us (family are often our worst critics). I wish we all lived close so that our kids could support each other.
  12. PatPalmer

    PatPalmer New Member

    My Daughter too at the age of 13.

    Seems to be a common theme around this age group - I am half convinced it has someyhing to do with inoculations.

    Predisposition yes, but the injections (which often have chemicles like Mercury) is the trigger....

  13. nickname

    nickname New Member

    ......and hormones too at that age with puberty.

    best wishes
  14. Lendi

    Lendi New Member

    As a mother of a child with a chronic illness, I know how you are feeling. You would give anything to take away the pain, both physically and emotionally, and feel totally helpless because you can't. My daughter has PCOS/insulin resistance, which is another disease without a known cause or cure. She went through most of her High School years dealing with this, trying to figure out what was wrong, having a weight problem which wasn't her fault, hormonal swings. I hurt for her so much, but there wasn't anything I could do. We finally figured out what was wrong, she is on medication and is better. She has learned a lot, is taking care of her body, has lost weight. She will always have this medical condition, but knowledge is power. We now know the enemy we have to deal with and are going forward. She is 20 now, and I still hurt for her. I will say she is an extremely well adjusted, knowledgeable responsible person with a great deal of compassion for others. I would guess having this disease made a difference in her personality. She wants to help other children and is closing in on her goal. I guess, maybe, there is a reason for everything and we just don't always understand what it is. If ever you need to talk "daughter talk" with someone who has been there, let me know. I can't say I have all the answers, but I would guess I've went through most of the trials.
    Gentle Hugs to you and your daughter, Lendi[This Message was Edited on 08/03/2003]
    [This Message was Edited on 08/03/2003]
  15. sujay

    sujay New Member

    It just breaks my heart to think about all the children who are suffering from pain and fatigue and getting so little sympathy or support from anyone out there. I really appreciated the support I got from my son's teacher, who recognized that he was a bright kid who loves to excel in school. He actually helped me keep from pressuring my child too much, and looking back, I am so grateful to him.

    I felt doubly (triply?) bad because here I was a physician, who more than suspected there was an infectious component to this disease in many cases, and had good evidence for a genetic basis, and knew I had a mycoplasma infection (confirmed just a few weeks before he got sick, but I had strongly suspected something of the sort for MONTHS) and I didn't do enough to protect my own child. Watching him struggle to get up in the morning and get off to school knowing he'd progbably be doubled up with abdominal pain and throwing up in the nurse's office a couple of hours later was almost more than I could bear, but having to carry him out to the car because he was in too much pain to walk was even worse. (Now, of course, he's 20 pounds heavier and just an inch shy of my own height. I didn't realize it then, but it could have been a lot worse!)

    Please, please consider the possibility of a genetic coagulopathy and recognize the importance of nutritional supplements to boost energy and support your immune system while you persist in trying to identify and eliminate the pathogens that are probably helping to perpetuate this illness. My son is looking forward to starting junior high with all his friends, and even thinking about trying out for the football team (though I know he is genetically predisposed to reading and playing chess, and he doesn't want to fall behind on his homework and hurt his chances of getting into Harvard.) But he'll probably play basketball and go out for track, and I won't worry about anything other than making sure he's got his asthma medicine on hand.

    Please hang in there and find a doctor who is willing to take you and your child seriously. We don't recommend waiting a full 6 months to make this diagnosis in children because it is so important that they get validation and support. This is certainly a complicated disease, and even I certainly wouldn't presume to know more than your own physicians, but DON'T GIVE UP HOPE. KEEP LOOKING UNTIL YOU FIND A DOCTOR WHO WILL FIND SOMETHING THAT WORKS.

    I've got to go now. Duty calls, and my office manager wants her desk back.

    God bless and keep you all,
  16. Hippo

    Hippo New Member

    Actually the doctor is not the problem, my daughter has TWO doctors who believe her, and she's not having trouble with the school, they believe her, too. It's friends and neighbors who are the problem. But thanks for your comments.

  17. sujay

    sujay New Member

    So glad you and your daughter have that kind of support. Focus on the positive and don't forget what kgg shared about teaching the pig to sing!

    God bless you both,
  18. cindye

    cindye New Member

    I know what you mean. At 15 my daughter started being tired all the time and it was round after round of going to the doctor and hours spent on the internet. Finally, I found a site on cfs and it had so many of the symptoms, I went to the doctor with this in hand. Fortunately, his wife had fms so that immediately alerted him to do the trigger point test and said yes, then with all the test to eliminate the other possibilities, she was diagnosed. Then, of course, there were all the doubters - she is lazy, depressed, etc but a letter to normals I found on the guai site helped people realize what was going on. Fortunately after 3 years I found Dr. St. Amand's book "What Your Doctor May Not Tell You About Fibromyalgia". The guai does not work for everyone, but thankfully it did for her. It certainly cannot hurt to try it! Good luck and give your daughter a big hug from my daughter and I.