Please help desperate mum
Hello there everyone i am new to this board, I am franctically searching the net trying to find someone in the same boat as me........... let me explain............................. sorry about the length of story.................
I have two children a 4year old boy who is lactose intolerant and a 22month old girl who has always had health problems, when my daughter was born she was hardly opened her bowels i took her too and from the doctors who told me its normal, she was scream in pain and her anus would bleed and tear, she would then anal prolapse(where her bottom turns inside out) anyway they kept telling me nothing was wrong. so i gave up.... at around three weeks old, i'd notice she randomly stop breathing and choke for no particular reason, again i approached the doctor and they told me this was her getting used to her lungs. so i put uo and shut up, as i stopped breast feeding i noticed her problems were becoming more and more serious again i took her to the doctor on a weekly basis and begged them to help me i couldnt sleep for worrying she wouldnt be alive in the morning, they sent me to the hospital who told me she had a chest infection and constipation (which i found very hard to believe as constipation doesnt generally stay and never ease off) anyway away i went again and again, so i searched the internet trawled for weeks and found disease called hirchsprung disease and went back to the doctors who was adamant it wasnt, to cut a long story short i went to several doctors who all said its was too rare!! so on new years day i sat in my hospital and refused to move until someone sorted my daughter out, well they thought i was a overprotective mother but i wasnt moving, i explained that my daughter goes to the toliet once every few weeks and when the she does its huge, (they said it was normal in some children) then i explained she'd stop breathing and they said "shes been doing it for nearly two years and she's not dead so it cant be to serious!!!" i was horrified anyway they said they'd keep her in overnight for observation, any way at 1am my daughter starts screaming and wakes the whole ward and then i see blood and realise its her needing the loo, so i help her through ( i have push her legs back to her head and open her anus) and she finally goes, i walked up to doctor and gave him nappy and shouted "your telling my thats normal!!!" finally aresult her agrees something is very wrong, but is adamant the stopping breathing is in my head so early hours of the morning emillie(daughter) stops breathing i ring the emergency and scream shes not breathing finally another breakthrough, the hospital finally admitted my daughter has short segment hirchsprung disease but bought a physician in to sort out her breathing problems he told me that she had a very serious PH imbalance he had never seen before, she cant have any acidic foods or she could die,
Ive been living with this now for 3 months and its a nightmare, as no one knows what it is no one knows what the future holds, is there anyone who has heard of this who can put a name to it or people who are going through what i am, she cant have the operations on her bowels because they dont even know if she can cope with the anesthetic!!!
I cant find any info on the net about this becuase i have no name for it!! all i have is a hospital appointment every fours weeks and the doctors to say "nothing more i can tell you as we have to take each appointment as it comes!!!"
if anyone has the slightest info please email me, i am so desperate for help.
thank you for taking the time to read this
_____________________________
Teri
2 children 1 boy 1 girl
Answers:
I'm sorry that I have no information for you, but I just wanted to say how very sorry I am that you and your little one are going through this. That sounds absolutely horrible; like a nightmare for any parent. I can only imagine the helplessness you're feeling through all of this. I can't believe it took THAT long for the doctors to correctly diagnose her! That is completely ridiculous. That's exactly why I'm so wary of just trusting a doctor's first opinion when they've done nothing to test for something more serious. It's like just because something is "rare" they refuse to even consider the possibility that the child could have it, or to run tests to eliminate or confirm that they don't or do have it.
I'll be praying for you and your little girl. I hope someone here is able to give you some information. Please keep us updated!
Answers:
This thread will stay - the others have been removed as duplicates.
Thank you for your understanding and cooperation.
--
Moderator2
Healthboards.com
http://www.healthboards.com/boards/faq.php?faq=faq_hb#11
"Be Courteous: Avoid Duplicate Posts
Do not post the same message more than once on a message board or on multiple boards. Duplicate messages can be frustrating for other visitors, especially for those whose time and energy is valuable. Remember that many participants in our community are in pain or have a DISABILITY. Weeding through the same message in multiple locations can be not only frustrating, but down right annoying. Duplicate messages will be deleted as soon as possible."
Answers:
mummyoftwo,
Unfortunately I don't have any information or advice that I can give you either. I just wanted to say how truly sorry I am for all that you had to endure just to get your daughter diagnosed and all you are still struggling with now. Your daughter is very lucky to have such a loving mother who would do anything to get answers. You are a wonderful mother and I admire your courage for sticking to your guns and not budging when nobody would listen to or believe you.
I too will keep your family in my prayers and I hope you are able to find the answers you need.
Answers:
I would've guessed your child(ren) had cystic fibrosis. Have they been tested for that. Sometimes constipation, large bulky stools, frequent chest infections, malabsorption/digestive issues...
I hope they've figured things out and started treatment.
I have two children a 4year old boy who is lactose intolerant and a 22month old girl who has always had health problems, when my daughter was born she was hardly opened her bowels i took her too and from the doctors who told me its normal, she was scream in pain and her anus would bleed and tear, she would then anal prolapse(where her bottom turns inside out) anyway they kept telling me nothing was wrong. so i gave up.... at around three weeks old, i'd notice she randomly stop breathing and choke for no particular reason, again i approached the doctor and they told me this was her getting used to her lungs. so i put uo and shut up, as i stopped breast feeding i noticed her problems were becoming more and more serious again i took her to the doctor on a weekly basis and begged them to help me i couldnt sleep for worrying she wouldnt be alive in the morning, they sent me to the hospital who told me she had a chest infection and constipation (which i found very hard to believe as constipation doesnt generally stay and never ease off) anyway away i went again and again, so i searched the internet trawled for weeks and found disease called hirchsprung disease and went back to the doctors who was adamant it wasnt, to cut a long story short i went to several doctors who all said its was too rare!! so on new years day i sat in my hospital and refused to move until someone sorted my daughter out, well they thought i was a overprotective mother but i wasnt moving, i explained that my daughter goes to the toliet once every few weeks and when the she does its huge, (they said it was normal in some children) then i explained she'd stop breathing and they said "shes been doing it for nearly two years and she's not dead so it cant be to serious!!!" i was horrified anyway they said they'd keep her in overnight for observation, any way at 1am my daughter starts screaming and wakes the whole ward and then i see blood and realise its her needing the loo, so i help her through ( i have push her legs back to her head and open her anus) and she finally goes, i walked up to doctor and gave him nappy and shouted "your telling my thats normal!!!" finally aresult her agrees something is very wrong, but is adamant the stopping breathing is in my head so early hours of the morning emillie(daughter) stops breathing i ring the emergency and scream shes not breathing finally another breakthrough, the hospital finally admitted my daughter has short segment hirchsprung disease but bought a physician in to sort out her breathing problems he told me that she had a very serious PH imbalance he had never seen before, she cant have any acidic foods or she could die,
Ive been living with this now for 3 months and its a nightmare, as no one knows what it is no one knows what the future holds, is there anyone who has heard of this who can put a name to it or people who are going through what i am, she cant have the operations on her bowels because they dont even know if she can cope with the anesthetic!!!
I cant find any info on the net about this becuase i have no name for it!! all i have is a hospital appointment every fours weeks and the doctors to say "nothing more i can tell you as we have to take each appointment as it comes!!!"
if anyone has the slightest info please email me, i am so desperate for help.
thank you for taking the time to read this
_____________________________
Teri
2 children 1 boy 1 girl
Answers:
I'm sorry that I have no information for you, but I just wanted to say how very sorry I am that you and your little one are going through this. That sounds absolutely horrible; like a nightmare for any parent. I can only imagine the helplessness you're feeling through all of this. I can't believe it took THAT long for the doctors to correctly diagnose her! That is completely ridiculous. That's exactly why I'm so wary of just trusting a doctor's first opinion when they've done nothing to test for something more serious. It's like just because something is "rare" they refuse to even consider the possibility that the child could have it, or to run tests to eliminate or confirm that they don't or do have it.
I'll be praying for you and your little girl. I hope someone here is able to give you some information. Please keep us updated!
Answers:
This thread will stay - the others have been removed as duplicates.
Thank you for your understanding and cooperation.
--
Moderator2
Healthboards.com
http://www.healthboards.com/boards/faq.php?faq=faq_hb#11
"Be Courteous: Avoid Duplicate Posts
Do not post the same message more than once on a message board or on multiple boards. Duplicate messages can be frustrating for other visitors, especially for those whose time and energy is valuable. Remember that many participants in our community are in pain or have a DISABILITY. Weeding through the same message in multiple locations can be not only frustrating, but down right annoying. Duplicate messages will be deleted as soon as possible."
Answers:
mummyoftwo,
Unfortunately I don't have any information or advice that I can give you either. I just wanted to say how truly sorry I am for all that you had to endure just to get your daughter diagnosed and all you are still struggling with now. Your daughter is very lucky to have such a loving mother who would do anything to get answers. You are a wonderful mother and I admire your courage for sticking to your guns and not budging when nobody would listen to or believe you.
I too will keep your family in my prayers and I hope you are able to find the answers you need.
Answers:
I would've guessed your child(ren) had cystic fibrosis. Have they been tested for that. Sometimes constipation, large bulky stools, frequent chest infections, malabsorption/digestive issues...
I hope they've figured things out and started treatment.