14 year old with fibro anyone here of a FIBRO CENTER IN PHILLY?

Discussion in 'Fibromyalgia Main Forum' started by 2YUNG, Apr 17, 2006.

  1. 2YUNG

    2YUNG New Member

    MY DAUGHTER HAS FIBRO SINCE SEPT. SINCE THEN SHE HASN'T BEEN ABLE TO GO TO SCHOOL AND STOPPED SOCIALIZING WITH HER FRIENDS. HER PHEUMY DR. SUGGESTED TO US TO SEE A DR. SHERRY IN PHILADELPHIA. ANYONE HEAR OF THIS CENTER? AND/OR THIS DOCTOR. WHAT GOES ON THERE? DO YOU GO FOR THE DAY, STAY FOR A WHILE OR WHAT? ANYTHING WILL HELP ME. I HAVEN'T CALLED THEM YET.
    SHE GOES TO A SOCIAL WORKER, PYCHIOTRIST, PED. RHEUMY, ALLERGIST, WENT TO PAIN MGMT. BUT COULDN'T REMEMBER ANYTHING. SHE HURTS IN DIFFERENT PARTS OF HER BODY ALL THE TIME. SHE DOESN'T GET TO TALKE ANY MEDS BECAUSE SHE'S TOO YOUNG, SHE ONLY TAKE AMOTRIPOLENE.
    THANKS.
  2. redsox10

    redsox10 New Member

    Has your daughter been propelry tested for lyme. i would get this ruled out. I would get a Western Blot done by Igenex labs. You might want to get more Lyme info. Do a google search on lymenet and got to the forums. My daughter is getting her life back now that she is being treted for lyme Disease.
  3. ephemera

    ephemera New Member

    I think the FFC is in Valley Forge. Directory Assistance should help you.
  4. hopeful4

    hopeful4 New Member

    Go to fibro and fatigue dot com for the Fibromyalgia and Fatigue Centers for info on their center in Philadephia. Or call their toll-free number 1-866-443-4276.

    They are located at:
    Fibromyalgia & Fatigue Center of Philadelphia
    1012 W. 9th Avenue
    Phone: 610-337-3339



  5. hopeful4

    hopeful4 New Member


    Debbie,
    I found a previous post of yours from February in which you posted to Firecop and said:

    "Thanks for your input on LYME. She has been tested when she got tested for FM. Her ANA came back positive. Nothing with the Lyme."

    Testing for Lyme is notoriously unreliable. What is the name of the test and lab that was used? Often, tests come back negative even though the person has lyme disease. The diagnosis is a CLINICAL one, meaning, it is made by a lyme literate medical doctor (LLMD) who takes into account the patient's history, symptoms, and lab results.

    You also said:

    "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."


    This scenario indicates that your daughter was exposed ticks more than once, and that you were bit and became sick. The idea that one must have a ring or rash in order to have lyme is false. About half of the people diagnosed with lyme have never had a rash or even a known tick bite.

    Please consider having her seen by a LLMD. Some of the doctors at the Fibromyalgia and Fatigue Centers (FFC) around the country are doing a very good job of identifying CFIDS/FM patients who have Lyme Disease.

    I was ill for 6 years and totally clueless about lyme, and apparently so were the many doctors I saw who were unable to help my CFIDS/FM. I was diagnosed with lyme disease at a FFC, and found to have other underlying infections, hormone imbalances, and immune problems.

    I hope you find the help you need for your daughter.

    Best wishes,
    Hopeful4
  6. starmom

    starmom New Member

    I was about 14 when fibro came on. I have had every test know to man. Inpat, outpat, dr office, all of them. shrink tests too.

    I come out with fibro and related pain and anxiety.

    14 is NOT too young, just not common.

    I still remember how I felt, being unable to cope, have fun, be a kid. And the long drives with my mom to see the docs.

    Let me know if you want to email between the 3 of us. It is a tough situation for all!

    It might help your dau to talk about it with someone who had it at the same age, and you to talk about it with someone who went to a top college and graduated with this DD.

    Hugs,

    Susie
  7. 2YUNG

    2YUNG New Member

    BUMP,BUMP
  8. 2YUNG

    2YUNG New Member

    HI,
    YES WE RETESTED HER FOR LYME END OF FEB. HAD THE WEST-BLOT IGG/IGM AND IT CAME OUT NEGATIVE AGAIN. THE LYME DISEASE AB WAS 0.5 LESS THAN 1.0 IS NEG. I WAS HOPING IT WAS SO SHE CAN BE TREATED AND HEALED, BUT NOT SO LUCKY. SHE DOES HAVE MANY OF THE SIGNS.
    THANKS FOR THE ADVISE.
  9. 2YUNG

    2YUNG New Member

    HI HOPEFUL4,
    YES I REMEMBER THAT POST, AND I HAD HER TESTED WITH THE WEST-BLOT IGG/IGM. IT CAME OUT NEGATIVE THE IGG WAS 0.5, LESS THAN 1.0 IS CONSIDERED NEGATIVE. HER ANA IS STILL HIGH AT 640. I'M GOING TO GO THE THE FIBRO & FATIGUE CTR AND BRING UP LYME WITH HER FIBRO. DEEP DOWN I FEEL AS IF SHE HAS LYME. BEING THERE MYSELF, I KNOW HOW BAD I FELT, I STILL HAVE PROBLEMS WITH MY MEMORY. I AM ALWAYS SEARCHING FOR WORDS THAT I WANT TO SAY BUT CAN'T THINK OF THEM. RIGHT NOW HER RIGHT ARM IS VERY SWOLLEN, IT HAS RED CIRCULAR RING ABOUT THE SIZE OF A QUARTER, RIGHT NEXT TO HER ALLERGY SHOT SHE GOT LAST THURS. TALKED TO DR. AND THIS NEVER HAPPENED TO HER B4, SHE'S USING STEROID CREAM, TAKING ALLEGRA AND MOTRIN FOR PAIN. WE WILL SEE HIM THURS.
    THANKS FOR ALL THE HELP.
    2YUNG IN NJ
  10. 2YUNG

    2YUNG New Member

    HI SUSIE,
    YES I WOULD LIKE TO EMAIL BTWN THE 3 OF US BUT I'M NOT SURE WE CAN SEND EMAIL ADDRESSES ON THE MESSAGE BOARD. I AM IN NJ WHAT STATE DO YOU LIVE IN? I'VE TALKED TO A MOM WHO HAS FMS AND HER DAU AT 14 ALSO HAS IT, SHE LIVES IN CAL. I HAVEN'T SEEN ANY POSTS FROM HER IN AWHILE. I DON'T KNOW WHAT TO DO, I FEEL SO HELPLESS WHEN SHE'S IN PAIN. RIGHT NOW HER UPPER ARM IS ALL SWOLLEN IT HAS A BIG RED CIRCLE IN THE MIDDLE THAT IS VERY SORE TOTHE TOUCH, AND ITS RIGHT NEXT TO WHERE SHE GOT HER ALLERGY SHOT LAST WEEK.
    HER RHEUMY DR. ISNT SIMPATHETIC AT ALL. SHE SAYS SHE JUST HAS TO LIVEWITH IT. PAIN MGNMNT DIDN'T WORK. WHEN WE WENT SHE WAS IN DENIAL ABOUT EVEN HAVING FIBRO.
    WELL I HAVE TO GO RIGHT NOW.
    TALK TO YA SOON.
    DEBBIE
  11. 2YUNG

    2YUNG New Member

    HI SUSIE,
    YES I WOULD LIKE TO EMAIL BTWN THE 3 OF US BUT I'M NOT SURE WE CAN SEND EMAIL ADDRESSES ON THE MESSAGE BOARD. I AM IN NJ WHAT STATE DO YOU LIVE IN? I'VE TALKED TO A MOM WHO HAS FMS AND HER DAU AT 14 ALSO HAS IT, SHE LIVES IN CAL. I HAVEN'T SEEN ANY POSTS FROM HER IN AWHILE. I DON'T KNOW WHAT TO DO, I FEEL SO HELPLESS WHEN SHE'S IN PAIN. RIGHT NOW HER UPPER ARM IS ALL SWOLLEN IT HAS A BIG RED CIRCLE IN THE MIDDLE THAT IS VERY SORE TOTHE TOUCH, AND ITS RIGHT NEXT TO WHERE SHE GOT HER ALLERGY SHOT LAST WEEK.
    HER RHEUMY DR. ISNT SIMPATHETIC AT ALL. SHE SAYS SHE JUST HAS TO LIVEWITH IT. PAIN MGNMNT DIDN'T WORK. WHEN WE WENT SHE WAS IN DENIAL ABOUT EVEN HAVING FIBRO.
    WELL I HAVE TO GO RIGHT NOW.
    TALK TO YA SOON.
    DEBBIE
  12. cindye

    cindye New Member

    I hurt for you and her - my daughter was diagnosed at 15. She did the guai protocol with a very understanding chiropractor - the massage and adjustments helped a lot. She to did not have a teenage life - I had to drive her to everything and be constantly available to pick her up at a minutes notice because she never knew when she was going to "run into the brick wall". Over the years we tried everything - it took us two-1/2 years before we found the guai. That started her back on her feet. She is now 22, lives in her own apartment and goes to college. She is currently going to a Fibromyalgia @ Fatigue Center (FFC) and has at last found out about all the thyroid and hormones that are too low and other things that are too high - we have hopes for improvement.

    During high school she set a very high goal for herself and that was all that kept her going - reaching for those good grades that would get her into a private college. There were a lot of tears, massages, gentle pushing and a lot of red-tape at school but she was fortunate to have very understanding teachers, for the most part and they were willing to work with her. Her last semester of high school she had to go on homebound - that was when she started the guai and at first there were a lot or really bad days - before the better days started.

    Prayers and lots of patience!
  13. 2YUNG

    2YUNG New Member

    Hi Hootie 1,
    I have a tentative appt for May 8th. My daughter is also having some other mind game problems at this time. Noone can get any answers from her. She WILL NOT go to school, and we do not know why. She doesn't want to go the the center. and says she's not going to take any of the meds or do what they say, so why bother, they aren't going to help her and she knows it. She doesn't want to feel better in a way, She can make through school with no problem in my eyes. The only problem I see is her getting up in the morn. But her pains aren't that bad anymore.
    How old are you if you don't mind me asking? Are you a female? I don't know what to do with her anymore. The physologist hopes to get something out of her, but no luck yet. The psychotrist hasn't helped either. Don't know where to go for help. I will be happy to converse with you. I just don't get much time on computer. The girls have it most of the time. This weekend they are away. So I have the computer all to myself. Talk to ya soon.
    Debbie
  14. 2YUNG

    2YUNG New Member

    HI
    IF YOU ARE STILL INTERESTED IN TALKING WITH MY DAUGHTER WITH FIBRO I'M STILL INTERESTED. I HAVEN'T BEEN ABLE TO GET ON COMPUTER TOO OFTEN. THEY HOG IT.
    HER HIPS HAVE BEEN KILLING HER THESE PAST 3 DAYS AND ITS GOING TO HER KNEES RIGHT NOW.
    PHYCIOTRIST JUST PUT HER ON LEXAPRO TODAY. I'M SCARED OF SIDE EFFECTS. SHE STILL TAKES AMITRIPOLENE. (20MG) A NIGHT. BUT DOESN'T SEEM TO DO ANYTHING FOR HER.
    HOW DID YOU GET HELP? AND WERE YOU WILLING? SHE'S NOT READY TO ACCEPT ANYTHING. I DON'T KNOW HOW TO CONVINCE HER THIS IS NOT THE WAY TO LIVE.

    HOPE TO HERE FROM YOU SOON.
    DEBBIE
  15. 2YUNG

    2YUNG New Member

    BUMP14 year old with fibro anyone here of a FIBRO CENTER IN PHILLY? 04/17/06 07:37 PM

    MY DAUGHTER HAS FIBRO SINCE SEPT. SINCE THEN SHE HASN'T BEEN ABLE TO GO TO SCHOOL AND STOPPED SOCIALIZING WITH HER FRIENDS. HER PHEUMY DR. SUGGESTED TO US TO SEE A DR. SHERRY IN PHILADELPHIA. ANYONE HEAR OF THIS CENTER? AND/OR THIS DOCTOR. WHAT GOES ON THERE? DO YOU GO FOR THE DAY, STAY FOR A WHILE OR WHAT? ANYTHING WILL HELP ME. I HAVEN'T CALLED THEM YET.
    SHE GOES TO A SOCIAL WORKER, PYCHIOTRIST, PED. RHEUMY, ALLERGIST, WENT TO PAIN MGMT. BUT COULDN'T REMEMBER ANYTHING. SHE HURTS IN DIFFERENT PARTS OF HER BODY ALL THE TIME. SHE DOESN'T GET TO TALKE ANY MEDS BECAUSE SHE'S TOO YOUNG, SHE ONLY TAKE AMOTRIPOLENE.
    THANKS.

  16. carebelle

    carebelle New Member

    Start a Dailey chart with a list of everything she eats and keep tract of when she hurts and where.I asume shes started her periods ?See if she is worse during this time.If she is regular ect.If smells bother her like household products or purfume.
    I beleave I had FM/CFS as far back as high school.I would miss so much school I'm surprized I even grad.
    Your Doctor will want to know if she has had any emotional or physical trauma's in her lifetime.
    I'm sorry I do not know anything about the clinic.But if she has a chance to go I would get her there.She is so young to have to deal with such pain my heart gos out to her.
    I beleave Amotripolene(I have taken this) is used for sezures/depression does she also have those?just be a very understanding mom you both are in my prayers.
  17. 2YUNG

    2YUNG New Member

    HI CAREBELE,
    HER DIET IS THE SAME EVERYDAY OF HER LIFE SINCE ABOUT 4 YRS OLD. SHE STOPPED EATING ANY MEAT AROUND 4ISH. NO VEGGIES, FRUIT OR ANYTHING GOOD. ALWAYS BEEN GOOD ON HER BLOOD COUNTS SO DR.'S SAID DON'T WORRY ABOUT HER, ITS PHASE.. SHE EATS ONLY CARBS. BAGELS W/CR. CHEESE. MAC&CH, PASTAS, LETTUCE(SOMETIMES) MOZZ CHEESE, OR STICKS FF, POTATOES. ALL STARCHES. I CANNOT GET HER TO EVEN TRY ANYTHING ELSE. I GIVE HER VITAMINS THAT SHE FOUGHT FOR THE LONGEST TIME, BUT I WON, NOW SHE TAKES A DAILY MULTI VIT, B-12 BUT, SHE SAYS IT DOES NOTHING FOR HER. I GOT FIBRO MALIC AT THE HEALTH FOOD STORE, BUT SHE REFUSED TO TAKE THEM, THEY WERE TOOOOO BIG, SHE WILL NOT PUT IT INTO SOMETHING. I DON'T THINK SHE WANTS TO GET BETTER AT THIS TIME, WHICH SEEMS IMPOSSIBLE, BUT SHE HASN'T HIT BOTTEM, NO MATTER WHAT WE DO, WE CANNOT CONVINCE HER THAT A BETTER LIFE IS OUT THERE.
    HER FRIENDS ARENT THEIR FOR HER ANYMORE, THEY ARE 9TH GRADE AND TOO MUCH EXPERIMENTING FOR HER AT THIS TIME, AND SHE FEELS BEHIND AND IS VERY IMMICHURE FOR HER AGE. WHICH SHE IS HEAD STRONG ABOUT, AND I AM GRATEFUL FOR. HER PERIODS, SHE GOTS 2 x's SO FAR. DR. SAYS SHE NEEDS MORE VITAMINS. SO DID THAT GOT IT THE NEXT MONTH, BUT NOTHING SINCE. SHE JUST STARTED I'M NOT WORRIED ABOUT THAT, BUT HER PAIN WAS NO DIFFERENT THAN. I HOPE SHE TAKES AFTER ME.
    NEVER HAD CRAMPS, OR PROBLEMS. TAKE CARE AND HOPE TO TALK TO YOU IN THE FUTURE.
    DEBBIE
  18. carebelle

    carebelle New Member

    Hang in there its tough being a mom of a 14 year old.If I can ever help with any advice just write me and I'll try to watch for it.
    She sounds very normal for a 14 year old except for the FM
    At that age their moods swing more then a porch swing.Keep us informed if you take her to a fibro clinic.
  19. SusEQ

    SusEQ New Member

    Hi,

    I am sorry to read about your daughter being a teenager with fibro. It is difficult enough for me to be an adult and deal with CFS, Fibro and Lyme.

    I go to the Cleveland Fibro and Fatigue Center. I have corresponded with "Sarasmom" who takes two of her teenage children to the Cleveland FFC.

    Please do a search for "Cleveland FFC" or Username "Sarasmom" to check out some of the info she has written about the treatment for her children.

    I wish you and your daughter the best of luck.

    SusEQ