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01-02-2013, 02:43 PM   #1
Mylittlesunshine
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My daughters story

Hi my daughter is nearly 4 years old and has been
Having serve diarrhea for a few years now with tummy pain
Knee pain and when she is really bad blood loss,
She was suppose to have a colonoscopy done
On 13 dec but had to be canceled as she had
Bad reaction to the bowel prep (sodium picosulphate elixar).
We now have another date mid jan and I'm worried
She will have another bad reaction.
At the moment her symptoms are really bad
She is having 10 plus diarrhea nappies a day
With lots of mucus, she won't eat, tummy pain, her
Belly is so distended and loss of weight with no emery.
I don't know if this sounds like ulcerative colitis
Like her GI doctor thinks it is, all I know is
I wish it was me having this as my little sunshine needs
A break.
01-02-2013, 02:56 PM   #2
Devynnsmom
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I'm sorry she is feeling so bad
Is the colonoscopy being done at the same place as the first one? If so they will try something else for prep. Is she on any meds right now? What are you using for pain? Our GI told us to use Tylenol, but to stay away from Ibuprophen.
I hope you get some answers soon. I'm sure you will get a lot of advice here. Good luck!
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Samantha, AKA Devynn's mom


Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
01-02-2013, 03:01 PM   #3
Sascot
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Sorry to hear about your little girl. Sounds like she is not doing so great. Could they not just admit her to the hospital and get all the tests done asap?
Mid January seems a long time away.
01-02-2013, 03:07 PM   #4
Mylittlesunshine
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I'm sorry she is feeling so bad
Is the colonoscopy being done at the same place as the first one? If so they will try something else for prep. Is she on any meds right now? What are you using for pain? Our GI told us to use Tylenol, but to stay away from Ibuprophen.
I hope you get some answers soon. I'm sure you will get a lot of advice here. Good luck!
Hi devynnmom
Yes the scopes are being done at same hospital,
As for meds she's on
Folic acid
Iron
Multi vit
Calcium
Neocate
Ventolin
Clinal modulate
Renitadine
Dicylovine
The only pain relief is paracetamol
01-02-2013, 03:44 PM   #5
Suzysu
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Hi, I'm so sorry you are going through this - I know how awful it is to care for a little one who is going through so much - Is there a cancellation list for the scopes? can you call the GI team every few days to ask if they can fit her in sooner? Can you check with them that they will use a different prep for her?
I hope you get soe answers and some help for you little girl soon xxxx
01-02-2013, 04:00 PM   #6
Mylittlesunshine
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Thanks everyone
We where in a&e on New Year's Day she was
Having too much pain and diarrhea, but they sent
Her home with paracetamol and told to push fluids
And keep her on liquid,
I called the GI today and nothing new didn't get
A call back like promised.
01-02-2013, 04:21 PM   #7
Jmrogers4
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Hope you get answers soon, it is so hard to watch them in pain and not have any answers. Hope you can get it to get scopes done sooner. I agree with trying to get in on a cancelled scopes.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
01-02-2013, 05:10 PM   #8
Crohn's Mom
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Hi MLE, and welcome

I'm so sorry you've found a need to search us out, but we're happy to have you!

Re the bad reaction to the prep; has your GI discussed using Mirilax as a prep instead? It seems to be much easier on the little ones.

I sure hope the next prep goes easier on her, and you get some much needed answers for your baby.
Hang in there mom, and lean on us for support , and please don't hesitate to ask all the questions you need. Nothing is too small, or big, and we will do what we can to ease your fears, or point you in the right direction.
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DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
01-02-2013, 05:31 PM   #9
Farmwife
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So sorry to hear another one so young.
Hugs to you both.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
01-02-2013, 07:35 PM   #10
my little penguin
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Just wanted to send more hugs thinking of your little one
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01-02-2013, 08:18 PM   #11
Devynnsmom
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Ok, the paracetamol is acetaminophen. I had to google it. I would keep calling and ask to be put on the cancellation list. They can give you the prep and you would really only need a days notice. Its disgusting that they would send her home again on pain meds. I really hope you get a call back and they can get her in ASAP.
01-02-2013, 09:48 PM   #12
upsetmom
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I'm sorry to hear about your little girl...
I can't believe they sent her home.
Keep ringing and hopefully they get her in sooner.
01-03-2013, 04:40 AM   #13
Sascot
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I second the phoning again and again. The only way I ever got anything done quicker was to phone repeatedly (that and a few tears )
If you can try the consultant/surgeon's secretary and play on her sympathies, it can go a long way to getting things done quicker.
01-03-2013, 05:11 AM   #14
Mylittlesunshine
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Thank you everyone for your replys
It's been a very long night awake with
Her up crying with belly pain and 4 change
Of nappies.
I called the secretary for her GI doctor this morning
Like I did yesterday, I was told that his secretary was
Off and she would take the message and see what she
Could do.... Then I called the Gp really frustrated thinking
That maybe I could get appointment or phone
Consultation no such luck.
At this moment I feel like crying, screaming I'm so frustrated.
Sorry for going on font know what to do
01-03-2013, 05:22 AM   #15
upsetmom
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If i were you i would take her back to the hospital...no child should have to suffer like that.....i don't know what they were thinking when they sent her home...
01-03-2013, 06:41 AM   #16
Mylittlesunshine
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I was just wondering, if your child suffers
Diarrhea what meds do u give them to slow
Things down, my daughter can't take Imodium
It makes her vommit serverly.
01-03-2013, 06:44 AM   #17
Dexky
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I'm very sorry your baby is going through all this! I think the best advice you'll find here is from these incredibly determined mothers who have also had to fight like banshees for their children's well-being. Good luck! Don't take no, or silence, for an answer!
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01-03-2013, 06:52 AM   #18
upsetmom
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I usually give my daughter Lomotil....but i'm not quite sure if you can give it to small children.
You can only get it with a prescription.
01-03-2013, 09:59 AM   #19
Mylittlesunshine
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Still no word from GI doc, but GP called he spoke
My GI secretary and she said her consultant is off
So she was gong to find the reg and either
Get her to call me or will fax prescription for
Some meds..... So it's a sit and wait again
She said it would be today but I ain't holding my breath.
01-03-2013, 10:48 AM   #20
Devynnsmom
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Aww if she is in that much pain and still having diarrheah I would take her back in to emerg. Eventually they will do something. I would take her in and tell them you are not going anywhere until they reassess her. ((((hugs)))) poor sweety.
01-03-2013, 10:51 AM   #21
kimmidwife
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Hi and welcome! Sorry you had to find us. I have to say I second Devynsmom. If your daughter continues on that sick she needs to be looked at. Especially one that little is at risk for dehydration. Is she urinating ok? You may want to keep an input output chart. You can google them and find one. Here is a link to one I found
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1515456/
You write down everything that comes out of her and everything she takes in. Then take it with you to the doctor or hospital so you can show them what is going on exactly.
__________________

Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
01-03-2013, 10:56 AM   #22
Mylittlesunshine
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Thanks devnnysmom,
01-03-2013, 10:59 AM   #23
Mylittlesunshine
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Kimmidwife all I have had for past days is diarrhea
I've not had one nappie with just wee, so
I can't really tell if she is passing urine or not.
Thanks for the link I'm going to look at it now
And will print it .
I'm so greatfull for everyone's help and advise.
01-03-2013, 11:09 AM   #24
kimmidwife
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There is a little trick to see if she is passing urine. You know those mini maxi pads they have? In the USA they are called panty liners. Stick it to the lower front of her nappie and hopefully it will only pick up the urine.
01-03-2013, 02:27 PM   #25
Clash
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Just wanted to send hugs and support! I agree with the other members be a squeaky wheel until you get relief and answers for your little one.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
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PAST MEDS: remicade, oral mtx, humira
01-03-2013, 02:44 PM   #26
QueenGothel
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My dd doesn't have a colon and she just turned 5 have you tried food modification to slow her stools down. Peanut butter on white bread, mashed potatoes, applesauce, bananas, rice, mashmallows of any kind and in anything. Rice Krispies treats are awesome. We avoid greasey foods, whole grains and raw fruits and veggies tend to make things move rather quickly. Iron supplements can also help slow her down, ask her doctor if she needs it. We use all proteins but add the slower downers with it so thing are a bit more controlled. We use psyillium powder to slow her down but this is something to discuss with the doctor bc it can stop her up too if not done right. When used as slower downer we use very little like 1/4 tsp in 1 oz of water during meals. Ignoring the directions to drink lots of water. We also avoid fluids when eating to slow things. But as I said my child's anatomy is completely different than most.

Best of luck to you both. Hang in there.
01-03-2013, 03:14 PM   #27
Mylittlesunshine
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My dd doesn't have a colon and she just turned 5 have you tried food modification to slow her stools down. Peanut butter on white bread, mashed potatoes, applesauce, bananas, rice, mashmallows of any kind and in anything. Rice Krispies treats are awesome. We avoid greasey foods, whole grains and raw fruits and veggies tend to make things move rather quickly. Iron supplements can also help slow her down, ask her doctor if she needs it. We use all proteins but add the slower downers with it so thing are a bit more controlled. We use psyillium powder to slow her down but this is something to discuss with the doctor bc it can stop her up too if not done right. When used as slower downer we use very little like 1/4 tsp in 1 oz of water during meals. Ignoring the directions to drink lots of water. We also avoid fluids when eating to slow things. But as I said my child's anatomy is completely different than most.

Best of luck to you both. Hang in there.
Hi myrrh hand
My dd isn't eating really at mo, it's has been
A struggle to eat at all, also she is on a strict diet
As it is, she is allergic to milk, nuts and soya
As for milk she is on a neocate instead of milk.
How is row an doing?
01-03-2013, 03:24 PM   #28
QueenGothel
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Aw poor kiddo. Being so restricted really stinks! Rowan is dealing with a possible bowel obstruction or adhesion scarring issue stopping food passage so she is on only liquids and very soft food now. Hoping things resolve soon we are schedule for contrast enema study tomorrow morning. Hope we get some good information.

Last edited by QueenGothel; 01-03-2013 at 03:50 PM.
01-03-2013, 03:27 PM   #29
Suzysu
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I'm with everyone else - take her to A&E (is there an A&E at the same hosp as your GI?) - say your not leaving till they at least sort her pain out - you shouldn't have to ask on a forum what meds she needs to slow her down that is for her so called Drs to sort out! Grrrrrrrr - makes me so cross that they can just leave one so young without the meds they need. - Hope she is better tonight xx
01-03-2013, 03:31 PM   #30
Mylittlesunshine
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Thanks myreinhard
Sorry for the spelling before lol, at the moment
All she wants to have is liquid and ice lolly
An jelly when in the mood.
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