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Worried mother of boy with symptoms of Hirschsprungs disease - but no diagnosis

Posted In: Medical Stories 2 Replies
  • Posted By: motherofthree
  • December 24, 2010
  • 09:19 PM

Wondering if i could get some advice from a doctor with knowledge of hirschsprung disease or whatever my son may have,the doctors and consultants have been awful. My son is now nearly 5 years old,has had severe constipation since birth,vomiting after food or when eating,very poor appetite,underweight for his age,always tired,bones ache,looks pale. Since one he has been on lactulose (which now doesn't work),sennakot,Movicol (which he is currently on - but now not working). he has recently been in hospital for a week to remove impacted stools,he had two enemas,lots of movicol and was discharged only follow up to go to the constipation clinic,which i am not happy with and he has been forever on movicol,now i want tests done and no one seems to be listening.no blood tests done,no urine tests done....nothing.... had previously been admitted in January of this year for the same reason... I am getting so frustrated i really wish i had the money to go privately as then maybe something would be done. 2 weeks now since he was in hospital the movicol is not working properly he has gone back to barely eating anything,losing weight again.... I don't know what to do.... Please help...

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  • Wondering if i could get some advice from a doctor with knowledge of hirschsprung disease or whatever my son may have,the doctors and consultants have been awful. My son is now nearly 5 years old,has had severe constipation since birth,vomiting after food or when eating,very poor appetite,underweight for his age,always tired,bones ache,looks pale. Since one he has been on lactulose (which now doesn't work),sennakot,Movicol (which he is currently on - but now not working). he has recently been in hospital for a week to remove impacted stools,he had two enemas,lots of movicol and was discharged only follow up to go to the constipation clinic,which i am not happy with and he has been forever on movicol,now i want tests done and no one seems to be listening.no blood tests done,no urine tests done....nothing.... had previously been admitted in January of this year for the same reason... I am getting so frustrated i really wish i had the money to go privately as then maybe something would be done. 2 weeks now since he was in hospital the movicol is not working properly he has gone back to barely eating anything,losing weight again.... I don't know what to do.... Please help... Hi, I so understand what you are going through. We too are going through it with our 8 year old daughter. Same things and hospitalization for constipation but they never waited to get her totally cleaned out. She barely made one bm and discharged her. It is ridiculous. My best advice to you would be to go to a Childrens Hospital and find a pediatric surgeon. We switched primaries and this time instead of a MD we found a DO and he has got things moving and we are going to a childrens hospital to finally get a biopsy. You need a biopsy to be sure that that is what it is (hirschsprungs) I feel you pain and wish you the best but keep pushing. I hope this helps.
    lovebuttons 1 Replies
    • January 16, 2011
    • 05:41 PM
    • 0
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  • Hi! I completely feel your pain. My son was diagnosed with Hirschsprungs Disease at 10 weeks old and he is now 2. He still continues to have problems and we have been in the hospital 15 times for at least two nights each time. One thing that we have found that recently helps is rectal decompressions. I am sure it will be ******n your child, since he is older, but it works nearly instantly for my son and he feels better. We are still finding other ways to help him with his short gut, but the decompressions always seems to be a quick and simple solution. I hope this helps you out!! Good Luck!!!
    TiffSpa 2 Replies Flag this Response
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