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01-03-2013, 03:35 PM   #31
Mylittlesunshine
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Suzysu she's asleep at moment but how long not sure
Will see what the night brings and take from there,
If no better tomorrow will at hospital tomorrow x x
01-03-2013, 03:40 PM   #32
Sascot
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I totally sympathise, have been there and done that waiting around desperate for the phone to ring, for anyone to help! A couple of weeks before Christmas I spent a Monday phoning round and no one was much help, so Tuesday we went to the kids hospital A&E and I refused to leave till they did something. 3 days later my daughter had her appendix out and a good look everywhere with the camera. Sometimes it's worth showing how desperate you are.
Good luck if you go to the hospital tomorrow.
01-04-2013, 04:45 AM   #33
Mylittlesunshine
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@ sascot thank you, it is really hard to see your
Little one suffer and no one willing to do anything.
01-04-2013, 04:51 AM   #34
Mylittlesunshine
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UPDATE
Last night we where up a few hours again
With same tummy pain and nappie changes.
Got a call from GI this morning and he said
He wasn't prepared to give meds until stool
Sample came back....arragh
Just feel like hitting my head against brick wall.
As for bowel prep for colonoscopy they want
To admit her the day before as they only use
The med that was given the first time and they
Want her in a controlled environment.
I'm going to see what today will bring.
I just want to say I am so greatfull for all
Your help and support u have given me.
01-04-2013, 06:09 AM   #35
Dexky
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What were the symptoms of her reaction to the prep??
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01-04-2013, 07:46 AM   #36
Mylittlesunshine
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Dexy serve vomitting, bleeding, couldn't walk
Dehydrated serve pains , fainted
So they want to admit her day before
01-04-2013, 11:42 AM   #37
Suzysu
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ummmmmmm I am no medical expert - but that reaction to the bowel prep does not sound good - I hope it was a one off and things go better this tie round - at least if she is in the hosp they can give her fluids etc but can you ask them if it is possible for her to have something different? it sounds like there are lots of different preps availiable? xx
01-04-2013, 11:48 AM   #38
Mylittlesunshine
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Suzysu I already asked yesterday if it was possible
For a different prep, they told me this prep
Is the one they use for young children as
It is the most simple prep over 2days and the
Child only take 5ml of sodium picosulphate each
Time as a medicine and it has no taste so u can hide
In juice . I am worried though x
01-04-2013, 11:54 AM   #39
Clash
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I'm sorry she had a reaction the first time around, I hope it was a one off and being in the controlled enviroment will make it easier. But, just in case this time around you may want to browse through this thread and see the other preps that have been used with kids and take note of them. If the need arises you could suggest the hosp look into getting one of them for her. I hope all goes well!!!
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01-05-2013, 05:55 AM   #40
Mylittlesunshine
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UPDATE
A very long night at A&E with her vommitting
A lot of pain and 5 full nappies.
Eventully after me going on they gave her
Some codeine with seemed to help
But you guessed it they sent her home.
I'm so frustrated no one seems to care my
Daughter is suffering , she has just woke
Up and first thing she says is mummy my tummy
Please make it go away,
We have appointment at hospital on Monday
I want to ask is there any tests, or anything I
Should ask them to text for?
What questions do u think I should ask .
Is there any pain med that ur kids have tried
That is good. Sorry for all questions just want to sort
Her out and sound like unknown what I'm talking
About. Any advise would be great .
01-05-2013, 07:04 AM   #41
izzi'smom
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MLS our GI generally doesn't give pain meds, as a rule. Tylenol is about all. THe reasoning is that if you use pain meds for chronic pain the pain eventually becomes worse. Izz was prescribed periactin to reduce motility-it is thought that the pain is related to motility and that this will help.
Hoping the prep goes better this time...they may be able to give her something for nausea.
I may have missed it...when is her scope? Is your appointment to discuss the results?
Wishing you lads of luck!
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01-05-2013, 07:42 AM   #42
my little penguin
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Hugs
^^^yeah that -- no real pain meds.
Hope they get her cleaned out and find answers soon

I know where we go they use miralax prep even on very little kids
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01-05-2013, 08:09 AM   #43
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hi Aw hunny i feel what ur goinf through my boy started with probs when he wae 2 he has dx at age 5 hes only just turned 6 now . lewis was given codiene for us to us at home when hes so bad i think ive gotta take him to the hospital . the weekend before xmas we rushed him to. a n e cause it didnt work hey had to give him dia. morphine he was that bad . lewis started with diarriah and we couldnt. get him outa nappies till he was 4 he suffers with constipation now thats why we use codiene so sparingly the only other thing codiene will do is firm up here pos but use it sparingly if u use it for 3 or more days they can become dependant one dose usually works for lew . its so hard seeing them in pain . ive cried . shouted at the docs one week i took him every nite and said this is how he is every niht u hqvebto do something we eventually got a scope he was dx with fistuling crohns he suffers with peri anal abscess to . just keep going back to a n e . ask for the gastro on call to come alot of the time the docs in a n e are training and they speak to the register on call u need the gastro i refuse to se anyone else now . keep pushing u will get answers .ni wish i could give more advice . r u in endland or america .xx
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01-05-2013, 10:42 AM   #44
QueenGothel
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MLS, so sorry he is in such pain. Unfortunately it is a symptom that cannot be cured without remission. I hope they figure it out quickly for him. We also have a love hate with pain meds. Some meds can cause an ileus which will just give them more pain, trapped wind. It really is a horrible reality for you and your little one. It is a tough pill to swallow that there isn't just a pill at all.

My kiddo has been through the ringer in the last year and the pain she was in by far was harder to watch than anything else.
01-05-2013, 02:40 PM   #45
Mylittlesunshine
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Izzies mum thanks for ur reply, my daughters
Scopes are for the 17 th of jan but they
Will admit her the day before.
01-05-2013, 02:41 PM   #46
Mylittlesunshine
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Thanks mop, just really hard seeing ya little
One in pain and can't do anything.
01-05-2013, 02:43 PM   #47
Mylittlesunshine
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Lewis's mum I'm in the uk,
How is ur little man ? X x
01-05-2013, 02:47 PM   #48
Mylittlesunshine
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Queen gothel.... Love the name
Thanks for the advice Hun really am greatful
How is Rowans, I've been reading her story
I'm so sorry for everything she has gone though.
Your a great mum x x
01-05-2013, 03:04 PM   #49
QueenGothel
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She seems fine. Playing, starving, constantly looking for something to feed her with this new diet we started today with a drop of a hat luckily I have a stocked food cabinet. But it is also very flawed and confusing to keep all the diets in my head separate knowing what each diet does and trying to process it all is a mind bender. I have faith sometimes it is all I have.
01-05-2013, 03:16 PM   #50
Mylittlesunshine
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I bet , I thought its hard trying feed my little one
With diary free nut free and soya free. It's amazing how
Creative u get with food when u need to x
Hope the new diet goes well x
01-05-2013, 08:29 PM   #51
izzi'smom
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Dairy free itself was a nightmare for us, and gluten free...don't get me started! Wishing you luck on the 17th AND monday...
My 2 year old was sick with a GI bug and was screaming "make it stop, mom". It's not something dd has ever said and it broke my heart.
01-06-2013, 07:20 AM   #52
Mylittlesunshine
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Question
Does anyone have any information on distention
My littleone woke this morning so big
She had it before it not as big as this.
Thanks x x
01-06-2013, 07:45 AM   #53
Farmwife
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I'll call in DustyKat and QueenGothel (Mary).

Mary is having this with Rowan lately. Her situation is different but maybe she'll be of help.
Hugs from Grace and I!
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01-06-2013, 07:55 AM   #54
Sascot
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Sorry to hear they sent you home from hospital again. Have to say I have yet to find a pain med that really works when they are bad. Hot water bottle seemed to have as much effect.
Did they call the on-call GI when you went to the hospital? Might be worth phoning the GI's secretary and telling her that you ended up in hospital again. Keep on phoning! Maybe they could get a cancellation.
No experience with distention - sorry!
01-06-2013, 09:38 AM   #55
my little penguin
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Also call the on call Gi about the distention . ASAP
Given her situation it can be a big issue.
01-06-2013, 10:03 AM   #56
izzi'smom
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No advice, but sending healing thoughts your way
01-06-2013, 10:46 AM   #57
QueenGothel
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Really depends on the cause of the distention. Constipation, poor pelvic floor function, and gas. I unfortunately have experience all three at different times. Toxic mega colon (TMC)is a rare thing but my DD has been tested for it a few times. There are more reasons for distention that are out of my experience. So I won't comment on those. More causes are like lactose intolerance, bowel obstruction, over eating the list goes on.

If it is trouble passing gas my which is my current issue...I think. Things can start to layer. Gas. Stool, Gas. The diet modification is low fiber, low carb, low fat, no milk. This has helped in just one day of implementation following an enema for releif.

They treat (TMC) with antibiotic therapy usually using PO Flagyl.

Constipation is the obvious Miralax correction. Which helped we would give it all day long and keep her stools like applesauce.

Not much you can do with pelvic floor function, the only thing I found helpful was pelvic thrust exercises. It is hard to teach a kid to do a kegel.

sorry this is happening for it can be so scary. The importance of bowels sounds and a soft belly are a good thing. Don't know if you have a stethoscope to ease you mind.

Above all keep her doctors informed of any changes you see.
01-06-2013, 06:27 PM   #58
Mylittlesunshine
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Hi queen gothel
Thankyo soo much for the information and
Advice I'm greatfull, it's so hard when you
Don't know what's going on inside our
Kids body's.
Well it's been a long day here and will update
You all when we have been to the GI appointment
Tomorrow. Hugs to all night x x
01-07-2013, 04:12 AM   #59
DustyKat
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My goodness, you and your little one are certainly being put through the wringer.

Having your daughter in hospital and under controlled conditions for the prep next time is certainly a better scenario.

As Mary has said, distention can have many causes and none of them are a normal state. Do you track her symptoms? If not please have a look at the suggestions we have in the wiki:

http://www.crohnsforum.com/wiki/Diary-Inclusions

It is so difficult when you have to present to the ER or even an arranged appointment and then have to try and remember all the details, and when you have a child with a history of chronic illness some of the details start to become normal to you and so you tend not to bring them up. I also found that health professionals found symptoms harder to refute or dismiss when you had it all down in black and white not to mention the truer time line it gives.

Maybe pop in on the UK local support group. There may be others in your area to give more specific advice about hospitals and GI's.

Good luck with the consult today, I hope more than anything you get some action and relief for your little girl, bless her.

Dusty. xxx
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01-07-2013, 05:34 AM   #60
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Hi My little sunshine - so sorry your lo is having such troubles. I dont have any experience of the symptoms she is having so I cant add anything to the advice you have been given already but just wanted to welcome you and wish you luck. Hope you get sorted out soon
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