8 year old daughter...Fibro??

Discussion in 'Chit Chat' started by momof471, Apr 30, 2008.

  1. momof471

    momof471 New Member

    I debated on whether to post this on the fibro board or here. Right now I'm really confused.

    My daughter is an 8 year old, petite, 44lb, sweetheart. Sweet, loving, good natured and happy child.

    Around 5 years of age, she began complaining of pain in her legs the doctor said they were growing pains.

    About 2 years ago she began having frequent stomach aches. Doctor said stomach aches were common in children, don't worry about it.

    Monday, my daughter said her heart hurt, I kept her home Tuesday to watch her. I was between deciding if it was muscular or stomach related.

    Took her to doc today. She said she has costochondritis and irritable bowel.

    Well, in that instant I connected the dots, I think my child has fibro.

    These are all things I deal with on a daily basis.

    Well, I brought up fibro to the doc. She said there is not enough research on fibro in children and that I should make sure to push her to go to school and 'work through the pain'.

    Well, right now I am sitting here and steaming, this doc knows I have fibro, so its in the family and she blows it off.

    I know she is probably ignorant in regards to FM as lots of docs are, but she blew me off!!

    I know what it feels like, how do I tell my 8 year old to work through the pain, when she is in tears. I see her anxiety levels building and I don't want this to happen to her.

    I'm stumped on what to do next. Her doc's office has lots of docs in it, so I am contemplating calling and asking if any of the docs believe in or treat fibro.

    I'd like to talk to my very supportive rheumy, but he is going through chemo for cancer right now, so that is not an option.

    I do not know what to do! Its one thing for me to have it ,but to watch my child in pain, its so much harder.

    Any ideas, thoughts, prayers and so forth, much appreciated right now.

    God Bless
  2. sisland

    sisland New Member

    Sorry to hear this news! I will pray for your Girl,,,My Youngest also has some of the symptoms but is now 21 years old and runs 5 miles a day so i know that it hasn't gotten her yet!,,,,,scarey though!
  3. 4everkid

    4everkid New Member

    Kids really do have growing pains. Bones growing, muscles stretching....it hurts.

    But under the circumstances you have every reason to expect the doc to take you seriously, and do some in depth testing to make sure it isn't FM. They can't just brand her with growing pains because it is the easiest and most likely diagnosis. A simple tender point test is quick and easy. There is no reason why they shouldn't test her to rule out FM.

    Maybe you could call the rheumy's office and see if they could suggest someone who could see your daughter now, until your own rheumy is back to work.

    I really feel for your little daughter. She is too young to have such problems. I hope you get the answers and the help she needs.
  4. springwater

    springwater Active Member

    my daughter too used to complain of pains in the back of her knees constantly when she was young..4 or 5. And lasted throughout ages 9,10 I think. Then they went away and come back only when she has a bad cold or flu thing.

    She used to have stomach aches too durng those times. And those too have gone away. At 18 she seems pretty all right except for very painful periods once in a while.

    Headaches didnt occur frequently but once in a while like most children.

    I pray your child doesnt have fibro (it doesnt have to be fibro) and will be a hale hearty happy child and adult.

    God Bless

  5. momof471

    momof471 New Member

    thanks for posting that, I found it last night when I was doing some searches and I've printed it out and am contemplating faxing it to her doc's office.

    Alot to think about!

    God Bless
  6. momof471

    momof471 New Member

    to all those who are responding.

    I'm not saying that she has it, but as a parent with FM, I find it strange that she has both of these disorders. IBS and Costo. Considering I have them to, its hard to think of her going through with it.

    I don't believe in growin pains, with all the searching I've done, it seems to me that it is a myth. She has the deep aching in her calves and shins and its been going on for 3 years.

    I think at this point it is worth exploring, because like in the article above, if it is found and treated these kids have a high likelyhood of recovering.

    I just have to make a plan on how to attack this and be strong enough to be a good support system for her.

    God BLess
  7. Cromwell

    Cromwell New Member

    Does she ever spike fevers from time to time? If so, please check out TRAPS-there is a support network for children with this. Some of the symptoms sound a little like it. There is a blood test for it but it is iffy.

    I know about this as Danny my son was recently asked to test for it, although we felt we should stick with his RA dx.

    I would suggest in any case you ask for blood work as also some other blood diseases can produce these symptoms which are not normal at all. Post me direct if you want to ask more questions.

    Love Annie
  8. mollystwin

    mollystwin New Member

    There are other possibilities besides fibro for your daughter. The nurse at my doctors office said her daughter began complaining of stomach aches and especially leg pains and it turned out she had lyme disease. Lyme can effect the heart as well. The nurse could not remember even her daughter having a tick bite!!

    Besides lyme, there are other infections that could cause the same symptoms such as EBV and other stealth infections.

    I have a neice who has always been a bit sickly who tested positive for active EBV, mycoplasma and lyme. She has a very low immune system. The doctors initially diagnosed FM for her as well.

    I hope your daughter is just experiencing growing pains, but if it continues I would urge you to consider more testing rather before accepting a diagnosis of FM. Victoria and ConnieAG both have children who are ill and could erhaps provide more insight into this.

    Take care,
  9. momof471

    momof471 New Member

    my plan of attack is this. I am going to contact the pediatrician's office and let them know I am not pleased with Wedensday's visit and let them know why.

    I am going to ask if they have a physician on staff that has some knowledge of multiple symptoms like this, let them know of my family history and that I want investigation into this.

    If they don't know how to help I want a referral for her to someone who would be knowledgeable in these areas. Even if it is simply individual issues they need to be looked into. There is nothing easy about IBS and you can't just ignore it. I know because with all that has been going on this week with my daughter and me mine is flaring terribly.

    I can't imagine being a child and having it.

    I will be planning this over the weekend and will contact them on Monday as soon as I've prepared for the encounter.

    Any input, please let me know.

    God Bless

    PS Thank you for all who have offered advice.

  10. mollystwin

    mollystwin New Member

    I think you are wise to be doing this. We have to be our own advocates especially with our children.

    I will pray for you that things go well and that you are connected with a good doctor.

    take care
  11. momof471

    momof471 New Member

    with asserting myself and it is majorly stressing me out, but it has to be done. So I will be calling them. The more I think about how she brushed my concerns off the madder I get!

    I think as mom's we have a gut instinct when something is not right and I have that feeling right now.

    Thank you for the suggestions, I am taking all of them into account, I'm not getting my mind stuck on the fibro. Just finding out what is wrong.

    Wish Me Luck!

    God Bless
  12. momof471

    momof471 New Member

    you are completely right. Doctor's radiate this attitude of they know everything and what they say goes. However, they are human and are really able to mess up!

    When it comes to my children though you have this inner drive to do what needs to be done even if it means telling the doctor what you want done.

    Sounds good doesn't it? Let's just hope I don't cave!

    God Bless
  13. Danille

    Danille New Member

    I don't remember how old I was when I first started having spells of bad enough pain to keep me bedridden for up to 2 weeks at a time. I just know I was diagnosed with arthritis at 8 and I don't have it now...except in my previously broken lower back. ...could I have been cured and not known it?

    There has never been a time in my life that I didn't hurt. I was put in year round swim lessons and dance class from age 8 to 13. I think that helped a lot. I was mostly fine during my teen years. At 18 I was bedridden for 2 weeks and then mostly fine again until 30.

    Around age 32 Dr's started saying FMS and 10 years later it retired me.

    I think it is wonderful that there are so many caring parents here. I remember excruciating pain as a little kid and nothing today hurts that bad. Having an illness affect growing bones has to be the worst thing ever. I will be forever grateful that my parents babied me when I so badly needed it and that they never gave up on trying to get me better.

    I certainly hope they find a way to keep these kids comfortable. This is no way to spend a childhood.
  14. charlenef

    charlenef New Member

    i think my baby as well has fibro but i dont want the dr to think im nut i have it my mom has it and my daughter is 11 and shows signs of it i try not to say it around her though she is always complaining about aches or pain after gym class for a day or two it breks my heart hugs charlene