Discussions By Condition: Gastrointestinal conditions

very concerned about 7 yr old daughter

Posted In: Gastrointestinal conditions 1 Replies
  • Posted By: jusshell2001
  • January 15, 2007
  • 11:18 AM

I am trying to find answers and having a hard time with the dr's here. I am just wondering if anyone can answer some of the questions I have.
Does anyone know about Hirschprungs disease? I have a 7 yr old daughter that has from day one been constipated. She didn't pass the meconium until almost 2 days old. I never thought this to be a concern until now. She has been through so much to try to clean her system out. Magnesium citrate, miralax, NG tube, and like 9 enemas over the past 1 1/2 yrs. The dr's here tried at that time to clean her system and now they are just saying they can't prove she was ever cleaned out back then. So back through meds and enemas and now they confirm she is cleaned out. However, now we have a starting point to make sure she doesn't get backed up again; instead of doing anything about it. So they want to keep her on miralax for a yr and then try to wean her off it and then see if the problem is gone or comes back (we already did this once for a yr and it came back, but because they can't prove that she was totally clean we have to start over). If the problem comes back, then we will do more tests. So I am being told to have her tested for Hirschprung's by like 3 different people, but the dr's wont test her. They did blood work for cystic fibrosis instead. I can't see how sh could have that! So I am wondering if it were Hirschprung's, would the miralax work to make her go to the bathroom or would it definitely not? Because while she's on it and as long as she is having diarrhea, she goes. I am just at the point of being really frustrated and am trying to find answers and have no choice but to bring her to these dr's. There's no where else to take her. I just don't know whether she should be tested and if I should make a complaint or not or if I am overreacting and they are right. They say this is normal...although the dr messed up and told me this is getting to the poingtthat it MAY not be normal. (It usually doesn't take this long to clean someone out) Hence, the testing for CF. If anyone can give me any advie or knows someone that had Hirschprungs and can tell me their story so I can see if it identifies with my daughter, I would appreciate it so much.:confused: :confused: :confused: :confused:

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  • To me, it sounds like your daughter may have HD. I would take her to a pediatric gastroenterologist and demand the test be run. They should be respectful of your request. If not, seek another doctor. I had to see many doctors before someone would test me for Gastroparesis. The test came back positive for Gastroparesis. You know your daughter. It doesn't hurt the doctors to test for HD. Even if the test comes back negative, at least it is checked off the list and you don't need to wonder. In regards to using Miralax all the time, it is alright in my opinion. I have an autistic cousin (14 years old) who has been on it for years. Not to mention, I take Milk of Mag a lot and my Gastroenterologist says its fine to use for years. In regards to being "cleaned out", that shouldn't be the main issue with your daughter. The doctors should be finding out what the cause of the constipation. As long as she is passing stool, whether solid or liquid, she should be alright. I'd just pressure the doctors to run tests for HD. Do you happen to live near a Mayo Clinic? I went to one in Minnesota and they ran any test I requested plus ones they wanted. Just a suggestion. I'm not a doctor. These are just my opinions. I'm praying you find some answers soon and your daughter gets to feeling better. I understand how miserable everything can be. May God give you both peace and strength always. Praying.God Bless.
    Anonymous 42789 Replies
    • January 15, 2007
    • 07:39 PM
    • 0
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