Discussions By Condition: I cannot get a diagnosis.

Please help 11 year old girl

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: JSTUCKLY
  • January 12, 2009
  • 05:42 PM

I am at my rope’s end and would really like help for me and my child.
I would say it stared in Oct. but I think she had symptoms for a long time, anytime she runs jumps and plays she has pain in her body i.e chest and legs sometimes arms. She is very tired all the time, anytime she east fatty foods she goes and has a runnen smelly bm. If the air is to thin or to thick she will get a dry chof. In Oct by CT they found a small spot on her lung. We went to the heart dr and her heart is good. We –r- now at the lung dr. they did the sweat test for CF and that can back normal. We our going on 4 mo with nothing. I am not sure where to turn, my daughter is 11 years old and this is running her life.

Reply Flag this Discussion

8 Replies:

  • Has she had a CBC?
    Anonymous 42789 Replies
    • January 12, 2009
    • 06:35 PM
    • 0
    Flag this Response
  • Post exertional symptoms are a hallmark of chronic fatigue syndrome...this post exertional symptoms may be in the form of more tiredness or pain in the body parts which were used. CFS can also give chest pain and bowel issues. Is she missing school cause of this? CFS is the top cause of long term school absentism in children. Does she also have sleep issues eg insomina or hypersomina, headaches, dizziness, memory issues............. If her issues were being triggered off purely by food issues.. she wouldnt be having the trigger of physical activity causing symptoms. So this shows her issue is more than just food problems. (she may have food issues going but you need to be thinking her issue is something broader than just that).
    taniaaust1 2267 Replies
    • January 13, 2009
    • 07:51 AM
    • 0
    Flag this Response
  • She is still going to school but very tired, She would tell me all the time her legs hurt, I would put it off as growing pains. Then when the chest pain happend it open my eyes. In Oct. when we went to the 2nd er vist her potsisiam was low. They said Bannana a day would fix that and that is what we have been doing. THey found the spot on the lung in Oct but said they cant redo the scan tell March.
    JSTUCKLY 3 Replies
    • January 14, 2009
    • 02:23 PM
    • 0
    Flag this Response
  • Does she have many broken bones in her life so far? Is she suffering from stress fractues or stress reactions in her bones? If her pain is in the joints, I agree with the possibility of Lyme disease but also want to add possibility of Rheaumatoid arthritis. This can be checked with the appropriate blood test. If the pains are more in the shin and right below the knee, consider asking for a bone density test of the hips and lumber spine. I am thinking of osteogenesis imperfecta. There are treatments for all of these but tests need ran. If your doctor will not order them, find a new doctor. Take note of any skin rashes and how many broken bones or teeth, amount and types of activity(including walking around a grocery store for an hour), foods that seem to flare up her belly problems too. Keep a journal as to what feels good too, like heat or ice on her legs. These can all be clues. If the RA is rules out, she may have allergies as well as something else. Ask to check her gallbladder. She is not too young to need it removed. Keep fighting for her and write everything down. As parents, we don't always hear what the doctor is telling us. Take notes while at the appointment. If you don't understand something, ask for clarification. A doctor is your employee for 15 minutes at a time. Make them work for it. You know your kid better than he/she does.
    Anonymous 42789 Replies
    • January 14, 2009
    • 03:39 PM
    • 0
    Flag this Response
  • Does she have many broken bones in her life so far? Is she suffering from stress fractues or stress reactions in her bones? If her pain is in the joints, I agree with the possibility of Lyme disease but also want to add possibility of Rheaumatoid arthritis. This can be checked with the appropriate blood test. If the pains are more in the shin and right below the knee, consider asking for a bone density test of the hips and lumber spine. I am thinking of osteogenesis imperfecta. There are treatments for all of these but tests need ran. If your doctor will not order them, find a new doctor. Take note of any skin rashes and how many broken bones or teeth, amount and types of activity(including walking around a grocery store for an hour), foods that seem to flare up her belly problems too. Keep a journal as to what feels good too, like heat or ice on her legs. These can all be clues. If the RA is rules out, she may have allergies as well as something else. Ask to check her gallbladder. She is not too young to need it removed. Keep fighting for her and write everything down. As parents, we don't always hear what the doctor is telling us. Take notes while at the appointment. If you don't understand something, ask for clarification. A doctor is your employee for 15 minutes at a time. Make them work for it. You know your kid better than he/she does. She has never had any broken bones so far, as for the rash's she has on on the bottom end of her noise where it meets the face. I took her to the Dr on it they say Exima (not sure how to spell that) Anywas she never had it before sometimes it gose up in her noise. I really like the 15 minute information. Makes me feel so in powered. Anyways I am waitting on some wide rang blood work to come back. Would Lyme dis, show up in blood work -r- is there a test that only sees it, guess what I am asking is would it miss with her red / white blood cells?
    JSTUCKLY 3 Replies
    • January 15, 2009
    • 02:32 PM
    • 0
    Flag this Response
  • bring her to a rhuematologist to have her checked for JRA (juvenile rheumatoid arthritis). It is autoimmune and can her her pulmonary problems as well.
    Anonymous 42789 Replies
    • January 16, 2009
    • 09:11 AM
    • 0
    Flag this Response
  • bring her to a rhuematologist to have her checked for JRA (juvenile rheumatoid arthritis). It is autoimmune and can her her pulmonary problems as well.Would this show up on a ANA test?
    JSTUCKLY 3 Replies
    • January 16, 2009
    • 11:25 PM
    • 0
    Flag this Response
  • Nothing terrifies a mother more than a sick child - especially if it seems the child is not getting better. The best medical care currently afailable seems to be a Level 1 Tertiary care children's hospital. As far as I can determine, every teaching hospital is Level 1 (level one). These hospitals generally have physician specialists in every field on staff. I found this on the Internet for you. Ben Taub Children's Hospital is in Houston. Children's Medical Center is at Dallas These hospitals may also have a clinic where your child can be seen by the same doctors who are associated with the hospital. Good Luck! I am at my rope’s end and would really like help for me and my child. I would say it stared in Oct. but I think she had symptoms for a long time, anytime she runs jumps and plays she has pain in her body i.e chest and legs sometimes arms. She is very tired all the time, anytime she east fatty foods she goes and has a runnen smelly bm. If the air is to thin or to thick she will get a dry chof. In Oct by CT they found a small spot on her lung. We went to the heart dr and her heart is good. We –r- now at the lung dr. they did the sweat test for CF and that can back normal. We our going on 4 mo with nothing. I am not sure where to turn, my daughter is 11 years old and this is running her life.
    Anonymous 42789 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.