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Old 04-11-2007, 12:04 PM   #1
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Mummyoftwo HB User
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

 
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Old 04-11-2007, 12:33 PM   #2
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cambria HB User
Re: Please help desperate mum

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!


 
Old 04-11-2007, 01:07 PM   #3
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happymom28 HB User
Re: Please help desperate mum

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.

 
Old 04-11-2007, 01:52 PM   #4
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Ratatosk HB UserRatatosk HB User
Re: Please help desperate mum

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.

Last edited by Ratatosk; 04-11-2007 at 01:53 PM.

 
Old 04-11-2007, 02:59 PM   #5
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wendyk33 HB Userwendyk33 HB User
Smile Re: Please help desperate mum

hi I also have a child with Hirschsprungs disease. He is now 13 and doing well but we had quite a time with him. He was diagnosed at 6 weeks following 3 bowel obstructions, one at birth. We were told he had "myconium plug syndrome". We were very fortunate that he didn't have any other health problems and is feeling so good right now. The first few years are rough, both on the child and on the parent and I know it is very hard to see your child go through this. I really hope her health issues are sorted out and that she can feel better. If you have any questions I will gladly answer them for you. Take care.

Wendy

 
Old 04-12-2007, 10:35 AM   #6
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Question Re: Please help desperate mum

Hello there,
THank you for your responses they are so gratefully receieved, firstly i would like to say for duplicating the thread and putting it into other catergories i just wanted to cover all my bases but completely understand the reason why they were removed.
The doctor did mention CF but when looking deeply into it her condition didnt ring true to it and therefore i didnt push it,
I would like to thank wendy for her post as its nice to find someone who has been through something similar to myself, i do have some quests for you though please if this is alright:
Did you son have the surgery to correct this? if so was it the two part surgery and was it sucessful, i think its called the anorectal mycopomy my daughter will have to have a bag for a while before they could reconnect the colon to the anus did you son have the bag?
Did you son ever have anal prolaspe and bleed during excretion? did the doctors ever try and fob you off with lactulose and other laxitives? if so did it work? and how old was he when they diagnosed his condition? and lastly how was he after the op?
Sorry for al the quests its just ive never chatted to anyone before that has been through it,
THank you everyone for all you kind thoughts and comments......... xxxx

 
Old 04-12-2007, 11:44 AM   #7
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wendyk33 HB Userwendyk33 HB User
Smile Re: Please help desperate mum

Hi there. I don't mind the questions at all. My son was 6 weeks at diagnosis. He was obstructed at birth and sent to the NICU where they did a rectal biopsy and told us he was fine. At 2 weeks he again obstructed and cleared on its own and was told he was fine and sent home. At 6 weeks he again had a bowel obstruction and was finally diagnosed. If he hadn't been diagnosed at that time I believe he would have died. He as 11 lbs at 2 weeks and 10 lbs at 6 weeks old. He was not eating and cried constantly but noone would listen to me just like with you. He had complete obstructions, no bm, distended abdomen and vomiting bowel movements. He had a colostomy put in (bag) at 6 weeks, a pullthrough at 9 months and an ostomy reversal at 10 months. He had numerous bowel obstructions (complete) until he got older. They became less and less frequent until his last one at 7 years old. He is now 13. He does have some stomach pain at times but nothing he can't handle.

The drs don't like to admit there is a rare disease happening in a child but once it is diagnosed they are very good at caring for the child as I bet you are seeing now that your daughter has been diagnosed.

I hope I answered some of your questions. If you have any more, please just ask. I hope things work out for you soon.

Wendy

 
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