New Here and in need desperately

Discussion in 'Fibromyalgia Main Forum' started by mytireddd, Oct 22, 2006.

  1. mytireddd

    mytireddd New Member

    I am a mom of 4 kids. My oldest is almost 12yo. I'm on here to help my dd. She is sick. Drs don't know why. They can't find anything wrong with her. Her symptoms are, in order of severity:

    severe fatigue
    sore throat

    She has missed 17 days of school and has been sick since the end of Sept. Her headache never goes away and I can't even wake her up in the mornings. All of her tests have come back negative and in perfect range. She just got a CT scan on Friday and we have another Dr appt on this coming Friday. This all started with a cold that never went away.

    Of course the first test was strep--negative, then bloodwork--mono, EBV, etc. She just had all of these tested for last Jan too. She did this same thing 9 mo ago. She was positive for EBV---but not active. So she has the virus in her system. I'm not sure of her levels this time around.

    Does any of this sound like CFS? I think the Dr is thinking more of depression than anything now. We have a family hx of a variety of mental stuff. But with her---the only mental thing she has is panic attacks---twice/year.

    It's really worrying me because this is not her personality at all!! She is a fun, bubbly, giggly girl! She misses her friends, misses youth group, and has been on the swim team since 8yo!! She just missed her first swim meet of the year this weekend. She WANTS to do these things, but she says her body won't let her.

  2. NyroFan

    NyroFan New Member


    I wish the best for your daughter. Since these diseases are so difficult for some doctors to diagnose you might want to get a few more medical opinions.

    I went to a multitude of doctors to find out what was wrong with me. Finally I found one who explained the myriad of symptons and called the disease what it was.

    I always think a second or third opinion is always needed.
    That is what I would do and i only present it to you as a suggestion.

    Well wished to dd.

  3. nanna4550

    nanna4550 New Member

    Some other things that can cause severe fatigue area;
    Candida (which can be treated with probiotocs) Check to see if her tongue is white. If so, and especially if she has taken antibiotics in the past, she probably needs them. You can get them at your health food store. The other thing I would check for is allergies. A friend of mine gets severe fatigue from a mold allergy, and she is also sensitive to wheat and avoids sugar as it feeds the candida.
    As usual, check with a professional.
    Hope you figure it out. LOL, Nanna
  4. Pianowoman

    Pianowoman New Member

    First of all, welcome to the board. I'm so sorry about your daughter; it somehow seems not fair. To answer your question, it certainly does sound like CFS and lots her age have it. Doctors seem to revert to the depression diagnosis when they can't figure out what's going on.

    There is lots of support and information here. There is also hope which I know you need but it is often a long road. I don't know where you are but if you can, find a doctor who knows about these illnesses. To start, there is a good doctor list at the top left of this page.

    Also, take time if you can to read posts here. The experience of those of us who are dealing with this will be helpful to you I think. Keep asking questions, that's OK.

    Good Luck
  5. tlayne

    tlayne Member

    Hi! I am sorry that you have to be here, but you have found a wonderful board. There will be a lot of people that will offer good advice. The one piece of advice that I would like to give you is; to keep being your daughter's advocate. Do not let the MD's just hand her a script for an antidepressant, and say that is her problem. If she is depressed that is one thing, but from what you have shared she is physically sick. MD's can be very imtimidating, but don't back down.

    If you can find a good and informed MD, hopefully you can get on top of this and she won't be my age and on the verge of being disabled.

    I wish you good luck, and your dear daughter good health. Hugs, Tam
  6. findmind

    findmind New Member

    If you can't find a dr. on this board near you, look up the fibroandfatigue clinics and get her fully tested asap, is my suggestion.

    The sooner she is properly diagnosed and treated the better.

    Did you get a referral to a psychiatrist to fully evaluate whether she really is depressed? She can take some tests and answer some questions that could pinpoint whether that is so. Don't take one drs word for it, please.

    Best of luck to you in finding answers. I hope this is something that can be treated once and for all.

  7. Liz919

    Liz919 New Member

    I hope she feels better. I would suggest seeing a nuerologist about the headaches. I had a headache that never went away for maybe 3-4 years before I got on the right medicine. If she's taking too much tylenol for the aches or the headache it will make everything a lot worse. My nuerologist said that my migraines were because my body was so used to taking so much tylenol (for the constant headache) when i didn't take it it caused problems. Since she's young you should probably watch how much she takes. I started the ball rolling because everytime I said "my head hurts" my mother replied with "well take some tylenol". I hope that helps and I hope she feels better. It sucks a lot to be a sick teen. Give her big hugs from me.
  8. mytireddd

    mytireddd New Member

    Since it only has been about 4 weeks---I'm sure the Drs think it will go away like it did in Jan.
    My plan this week is talking to my son's psychologist about her. I already talked to my other dd's counseling--for he sees a ton of kids with depression, anxiety, etc. He said he has never seen depression shown like my dd's extreme symptoms. This week I will talk to our psych and she is very well experienced with children and has seen it all. So maybe we can get that ruled out. 2 of my kids have psychiatrist appts on halloween--so I'm sure I will mention it then also. Her ped Dr said after that---maybe allergy testing. I don't think he knows what to do next.

    Really...........please list kinds of Drs and tests she should have done, so I can mention them to her dr on Friday.

    I'm not afraid to talk to any Drs about her. My other kids have special needs and I'm not afraid to fight for them! Hers just isn't like theirs. She seems more medical and they are mental/neurobiological.

    And I'm a RN---so Drs don't scare me!!

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