HELP, MOM WITH A 14 YEAR OLD WITH FMS

Discussion in 'Fibromyalgia Main Forum' started by 2YUNG, Feb 10, 2006.

  1. 2YUNG

    2YUNG New Member

    I'M A MOM WHOSE 14 YR OLD DAUGHTER HAS BEEN DIAGNSD. WITH FMS 9/05. SHE HAS SHORT TERM MEMORY, HEADACHES, PAINS IN HER ARMS DOWN HER HIP AND KNEE, HER THROAT SEEMS TO HURT HER ALOT AND CHEST FEELS LIKE ITS CRUSHING IN ON HER AT TIMES. SHE DOESN'T GO TO SCHOOL, BUT I GOT HER IN HOME INSTRUCTION FOR 3 SUBJECTS. WE TRIED GOING BACK TO CLASS FOR THE NEW YEAR, EVEN HAD HER SCHEDULED SHORTENED TO 1/2 DAY, BUT THE NOISE WAS TOO MUCH, SHE WAS VERY DIZZY AND COULDN'T TAKE IT AND IS BACK HOME AGAIN. SHE HAD BAD REACTION WITH PAXIL, ONLY TAKES AMITRIPYLINE. ANY IDEAS TO HELP HER I'M WIDE OPEN. HOW LONG SHOULD THIS LAST BEFORE SHE FEELS BETTER? SHE'S MISSING OUT ON SO MUCH.
    bump!!![This Message was Edited on 02/18/2006]
    BUMP[This Message was Edited on 02/22/2006]
  2. julieboo

    julieboo New Member

    Hi 2Yung,
    Your post is scary in the fact that It sounded like I wrote it.
    My daughter Hannah is also 14 years old. She has all the exact same symptoms as you daughter. She to is on home study after trying to go to school. We are hopeful that maybe she can return for at least 3 periods of school aday and 3 periods at home.
    I have had chronic fatigue syndrome/fibro for almost 17 years and did not want to accept that she too has this illness. We have struggled with the last 2 years going to every doctor to make sure we had ruled out everything else.
    I also had to question that she might have "sympathy pains" from growing up with a mother that had it. I knew this was not the fact because I knew that she complained also when it wouldnt have suited her.
    I know first hand how terrible this disease is, and what it feels like to be so sick and in pain, yet you dont look like it.
    I would like to talk to you more...... The number one thing is to get her a doctor that is knowledgable about this disease. The bad news is that there is no cure. But just having a doctor that understands is huge.
    Hannah is currently on elavil at night to try and help her with sleep. Because of her age I am afraid to give her a bunch of medications.
    I am going to clean up her diet and research some more on other what vitamins etc. for her age would be appropiate.
    I also have started her in a program where they have other
    people with fibro....physical therapy, teaching them relaxation, nutrition,accepting the illness and to learn your limitations and when to stop. They are teaching her slow moving stretches and warm water therapy.
    I am hoping that her age will be on her side, also knowing what is wrong with her, avoiding any other added stresses etc.
    Where do you live? We are in california. We have found a great pediatric rheumatology doctor that has patients with fibro. She is wonderful. Please reply because I would love to talk to you and help you in anyway that I can. Our daughters have the exact same symptoms and because I have this disease I can really understand what they are going through. Take care and hope to hear from you.
    Julie

  3. 2YUNG

    2YUNG New Member

    Hi Julie,
    It was great hearing from someone with the samething. I was beginning to think she was the only young girl with it. I've only heard of adults with FM. It started with her end of Aug. she had a very bad sinus inf., cough, went into broncitis and touch of ashtma. 5 different meds. and they were killing her. I cut back, cut in 1/2 and the biaxon wasn't working, Dr. gave her Zithromax. (She's allergic to all penicillins. She got penicillin poisoning last Nov. 2004) (which in the back of my mind think might have triggered the FM). Her inf. finally cleared up but she was still having trouble breathing, her throat still hurt, Dr. got xrays of chest and blod work. Her ANA came back positive. He referred me to Ped. Rhem. Art Spec. got right in. She did more & more blood work, ruled out Lupus, and Rhem art. She had fibro. went to Pain management. couldn't help because she was in denial that she had anything. and couldn't remember what she had to do. So $1,000 down the drain there. She wouldn't go to school, started with counselling, still going. Then physchiotrist she upped her Elavil and added Paxil. took it 4 3 wks. she went nuts, so dizzy, migraines, nausea, sweats, nitemares, Dr. said the low dose shouldn't have this effect. We took her off it and it took 1 week to get out of her system. Everything went away and the body pains came back. Meantime, she tried to go to school again, but just couldn't. Case worker can't believe it again, and thinks she needs to be in a fulltime hospital to be watched, because she was too imature. And that she has schoolophobia and just doesn't want to be there. She realy does, but just can't and she doesn't know why. Dr. are on our side and put her back on home instruction. She's an A student, doing well but not enough credits to stay in this class next year.
    She just started taking FIBRO MALIC by Trask got from Health food store. it has malic acid and magnesium, with MSM. So far so good. By the way her name is Jessica. We live on the other side of the states here in NJ. Shes home everyday. She lives on the computer. Does Hanna have an email? Maybe they can IM each other and compare notes, I know she feels like this is only happening to her.
    Good luck and thanks for answering. I need to get out of here early, we are getting ready for a blizzard this afternoon, anywhere from 6-18" of snow. With lots of wind.
    CWYL
  4. 2YUNG

    2YUNG New Member

    Hi Prickles,
    What kind of cherry juice? From chewing on a bing cherry or juice like Juicy Juicy cherry?
  5. dreamharp

    dreamharp New Member

    This might be something to look into. Dr. St. Amand has
    many teenagers reverse their fibro on his protocol! The
    younger you are the faster it works. You could check out
    his book at he libray called What Your Doctor May Not Tell
    You About Fibromyalgia Fatigue. He has a website with a
    message board with people from all walks of lives that are
    getting their life back. Some of the testimonies are
    amazing!




    Dreamharp
  6. julieboo

    julieboo New Member

    I think it would be great if Jessica could e-mail with hannah. I dont think you can give out E-mails on the message boards.
    what we need to do maybe would be to set up a time on the chat that they could get together and maybe give us your phone number so that we could exchange e-mail addreses.
    Let me know what you think.
    Julie
  7. elliespad

    elliespad Member

    When my daughter was pre-k she had trouble with endurance. Couldn't walk to go trick or treating, couldn't walk to preschool with her daycare providers other (younger) children. Always had severe leg pain (growing pains they said) Had muscle pains all over,

    By jr high school was in agony carrying heavy backpacks that other kids hated, but had no problem doing. With my history, i was always sympathetic and never pooh-poohed her problems. She was fit, active and went to the gym with my husband for several years. In general, a high achiever, but ALWAYS sick, several cases of mono, strept, etc. Missing 40+ days of school.

    Took her to rhumatologist around 7th grade and he dx. Fibromyalgia, although he had never dx. it in a patient that young. I insisted on Guaifenesin, on the chance that it could help her, I wanted her to have every opportunity to be helped early. Helped tremendously with her pain, to the point that in subsequent visits he withdrew his dx. of Fibro.

    She later required Tonsilectomy and Adenoids (around age 13 or 15) and that was a dramatic turning point in her health. For the better. Not just the throat issues, but her entire body changed. She is now 22, extremely fit, active, graduated college, working in a great job and ready to change gears and pursue a nursing degree to become a midwife. She still show rare signs of the DD but is nothing like it was as a child. And we will be armed with an arsenal of treatments to fight it as needed.

    She currently takes a lot of the same supplements I do and she MUST avoid pesticides, chemicals, toxins, FOREVER. She may be headed back to Fibro land some day, but for the past 8 or 9 years, she is in remission, and as close to the cure word as anyone could even hope for. She functions at the highest level academically, mentally and physically.

    I will pray that God would guide you both, and bring her healing.


  8. 2YUNG

    2YUNG New Member

    Jantan,
    My daughter is always sick to her stomach. She doesn't like to eat because of it. She eats a lot of saltines. She has a very poor diet. doesn't like anything but pasta, and cheeses. I udnerstand that dairy products are the worst. Well thats all she eats. She refuses to try anything new to help her. I can laed her to water,but cant make her drink. I wonder if thats part of FM too? probably.
    thanks.
    2Yung
  9. 2YUNG

    2YUNG New Member

    Hi Julie,
    I should be able to chat tonight. Not sure what to do though, never did it. We re 3 hrs ahead of you. Right now it is about 6 pm here in NJ. Jes is at phys.therapy. has a bad sore throat, does Hannah or yourself have problems with your throats? Her always hurt her. Dr.says nothing is wrong with it. She was up coughing til 2 am. I pick her up at 6:30 then dinner somewhere around 8pm should be good. what about you?
    Let me know.
    Debbie
  10. ldbgcoleman

    ldbgcoleman New Member

    Please have her tested for Lymes, active EBV (has she ever had mono?) and other stealth viruses. Search sarasmom under Author and read her posts. She has two children with Lymes who were successfully treated and are much better now. Start with her first post to follow her saga. She is a very inspiring Mom.

    my cousins daughter also has Lymes. She goes to a llmd in New York and has gotten much better. Your daughter is lucky to have you. Find a doctor who will listen and is open minded even if you have to go through several!

    Take Care and good Luck Lynn
  11. karatelady52

    karatelady52 New Member

    I'm reading this and thinking -- this sound like lyme symptoms. I agree with Jill and Lynn.

    Lyme can mimic a lot of illnesses including Fibromyalgia and Chronic Fatigue.

    Insist she get tested for the Western Blot by a lab called Igenex as the Elisa test aren't very accurate at all.

    Lyme is also a clinical diagnosis but you must find an LLMD (lyme literate MD) or you won't get anywhere.

    I spent years thinking I had Fibromyalgia and Chronic Fatigue until I found the right doctor who tested me for lyme and viruses.

    If you want to read up on lyme disease, go to Lymenet.org.
    They can help you find a doctor who knows about lyme and will answer any of your questions.

    Don't settle for a doctor telling her she has to live with it. Most people with FM/CFS have underlying viruses and bacteria causing these symptoms.

    Sandy
  12. 2YUNG

    2YUNG New Member

    Hi Firecop,
    Thanks for yourinput on LYME. She has been tested when she got tested for FM. Her ANA came back positive. Nothing with the Lyme. I have LYME, got bit 7 years ago by tick in my pool area. took an Infectious Disease Specialists to kick it out. Had it for months. Thought I was gonna die. Past out at night didn't even know how my girls got to bed. But the meds worked. thank God.
    Will look into Lymenet.org anyway, just in case. I know she had a tick on her a couple of times during her growing up, but no ring or anything.
    Thanks.
    Debbie
  13. 2YUNG

    2YUNG New Member

    So if I suspect Lyme disease with my daughter, who do you suggest that I see next? Shuld I bring it up to her and see what she suggests. So far I haven't really been very happy with any answers I've been getting from any of our doctors.
    thanks.
    Debbie
  14. 2YUNG

    2YUNG New Member

    Hi,
    yes going back, my daughter also had been sickly since kindergarten, I've mentioned that to all the drs. but never seemed to matter. As soon as fall came around school started, she would start with colds, feverss, strep, ear inf. sore throats all the time. She also had cocksackie virus about 3 times, with very high fevers since she was 2. She got her tonsils out in her 12th yr. she's been sicker. Her throat is always hurting her, sinuses too and we go to allergist for shots once a week. He's the one that kept pushing tests to find out what was what, thats how we found out about her ANA being up. I'm just not too thrilled about our ped. rhumy.
    Thanks for the input. It has helped me.
    Debbie
  15. ldbgcoleman

    ldbgcoleman New Member

    Do ytou live near a fybromyalgia and fatigue center? TRhey will test her more thouroughly can you can believe. Then you will know where to start! I had Mycoplasma, EBV adrenal fatigue, Candida overgrowth, Thyroid and Hypercoagulation. No other Drs found any of this. They just threw sleeping pills and antidepressants at me.

    I have conquered all of these things except for the mycoplasma and have been retested for it all. It has taken me 9 months. Please find a good Dr to help you if not the FFC. If you call they will send you research and articles to back up there treatments and protocols.

    Take Care and good Luck Lynn
  16. 2YUNG

    2YUNG New Member

    HI JULIE,
    HAVENT SEEN YOU ON THE BAARD LATELY. hOW'S HANNAH BEEN? JES HAS BEEN HAVING A BAD WEEK. DIZZY WHEN SITTING, NAUSEAUS WHEN STANDING. CANT REMEMBER ANYTHING. HAVE BEEN TRYING "ARNICA" FROM HEALTH FOOD STORE, RECOMMENDED BY OUR CHIROPRACTOR. SEEMED TO TAKING OFF THE EDGE. BUT NOW OTHER THINGS ARE FLAIRING UP. SHE'S NOT EATING WELL AT ALL AND WILL NOT TRY ANYTHING NEW.
    HOPE TO CHAT WITH YOU SOON. MY HUBBY JUST HAD ROTATOR CUFF SURGERY PAST FRI. IN LOTS OF PAIN, CAN'T USE HIS RT. ARM FOR 6 WKS. I HAVE THE 2 TO TAKE CARE OF AND STILL WORKING.
    TALK SOON.
    DEBBIE
  17. 2YUNG

    2YUNG New Member