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Crohn's Disease Forum » General IBD Discussion » Crohn's Polls » What age were you and/or your child when you were diagnosed with IBD?


View Poll Results: What age were you and/or your child when you were diagnosed with IBD?
Under 5 3 6.52%
6-10 4 8.70%
11-15 8 17.39%
16-20 10 21.74%
21-25 7 15.22%
26-30 6 13.04%
31-40 6 13.04%
41-50 1 2.17%
51+ 1 2.17%
Multiple Choice Poll. Voters: 45. You may not vote on this poll

10-16-2011, 09:33 AM   #1
QueenGothel
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What age were you and/or your child when you were diagnosed with IBD?

My daughter Rowan is 3 and was diagnosed 10/14/2011 with UC. I am curious us if she is the youngest on this forum and if anyone else has any really young kids. Having a hard time teaching her to swallow pills. Having a hard time explaining what is going on. Please any advice you have would be greatly appreciated.

Last edited by DustyKat; 10-16-2011 at 03:42 PM. Reason: Title change
10-16-2011, 12:01 PM   #2
izzi'smom
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DD haD just turned 4 when she became symptomatic, and she was diagnosed 01/2011. We tried for a while, but after a lot of gagging (on mini m & m's no less) we decided to not try Asacol and tried Remicade instead. (Asacol is HUGE...would love to know how you get Rowan to do it!) I'd rather not make it traumatic (as in forcing them down her throat).
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10-16-2011, 12:30 PM   #3
QueenGothel
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She is not at all mastering it. It is a nightmare. Trying to teach her to drink water first then toss it in chasing it with her looking up. Hoping after a week we can have it mastered. She hates shots and with all the recent torture. I do also. How do you give her remicade? They told me the pills were best for what is going on. We have lots of blood being passed. Hoping this blood issue goes away. It freaks her and I out completely. She was always constipated before all this happened. I wonder if I would have been more proactive and talked to a GI then and had her on Miralax if I could have prevented this whole thing.
10-16-2011, 12:44 PM   #4
SilverLady
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Sorry; I was 11. I thought it meant what age I had the illness from
10-16-2011, 01:00 PM   #5
QueenGothel
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I did. Should have made it. "Youngest age diagnosed with IBD." I should also have put in in the bigger forum. (i am a newbie) Looking for advice on how to make this easier for a 3 year old. I don't think there is a way.
10-16-2011, 01:32 PM   #6
Emily
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I don't have kids but I voted anyway since I was diagnosed at age 7. Unfortunately I have no advice, but my heart goes out to parents with young children dealing with this. I gave my parents hell, I hated all meds, all Crohn's related anything. I don't know how they dealt with me. It takes being a strong parent, that's for sure
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10-16-2011, 01:34 PM   #7
Emily
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ps. maybe a mod can move this thread outside the parents thread so more people will respond? I'd personally like to see who else was diagnosed young too
10-16-2011, 01:36 PM   #8
QueenGothel
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Idk how to move it. Who do I contact? Should I just delete and make another you think? Can I do that?
10-16-2011, 01:45 PM   #9
DustyKat
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Okay, so I moved the thread but the poll didn't go with it so I will PM David.

Dusty.
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10-16-2011, 01:59 PM   #10
QueenGothel
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Could you change the poll title? What age were you or your child when you were diagnosed with IBD?
10-16-2011, 03:34 PM   #11
DustyKat
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Sorry, I haven't been able to work out what the glitch was when I moved it.

Is the new poll okay?

I added and/or for those that have IBD as well as child, so made it multiple vote as well.

Dusty.
10-16-2011, 03:38 PM   #12
Misty-Eyed
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There was someone on here the other month who had a child who was only one with it. Wish I remembered their username for you!
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10-16-2011, 03:40 PM   #13
glum chump
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Mary:

Have you tried putting Emla on Rowan before she goes for a shot? My sister-in-law does this with my niece and it works really well. The needle isn't as painful for her (my niece is 4) since my SIL started using Emla on her.

Just a thought...

Kismet
10-16-2011, 03:45 PM   #14
DustyKat
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@Mary,

I have changed the title of your original post to reflect the new question so it will appear like that on the forum.

Dusty.
10-16-2011, 05:35 PM   #15
QueenGothel
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Mary:

Have you tried putting Emla on Rowan before she goes for a shot? My sister-in-law does this with my niece and it works really well. The needle isn't as painful for her (my niece is 4) since my SIL started using Emla on her.

Just a thought...

Kismet
No. After they blew so many veins at the ER and then again the other day 8 blown veins. If you go near her with a needle she freaks out. Her voice goes hoarse and she fights and screams. Scary! More traumatic I think than me getting her to swallow a pill. But a great suggestion for when she needs her immunizations.
10-16-2011, 07:34 PM   #16
izzi'smom
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Remicade is an infusion. I told our doc that I would work on pills but in the meantime he needed to figure something else out. So we did Pentasa, which is a capsule full of granules that I dumped into applesauce. We also did enemas along with prednisilone, fish oil gummy vitamins, gummy multivitamins...well, you can see my siggy lol! Your dd may like the gummy vitamins...my dd hated chewables.
We take liquid ferrous sulfate and isn't Prevacid available in liquid form? It's for GERD, right? We tried Miralax for a prep (laxative, right?) It's T-I-N-Y and we worked at getting down it for an hour before vomiting.
I think it's great that you are working with her to get the pills down but if your doc can make it easier on her, why not do it? (Unless, of course the meds are contraindicated in liquid form for some reason). Poor kiddo...IBD is enough to deal with.

I have never brought her to the ER. She has blood in her stool when she is symptomatic but we went to her primary care, were hospitalized twice, and referred. The ER is only going to poke, prod, radiate, and refer you. As long as our peds GI knows what is going on and she isn't bleeding profusely I will avoid it. We also haven't had any imaging (xray, MRI, CT) done other than the colon and endoscopies. I feel that because she is so young she will end up needing imaging soon enough and right now it will not change her course of treatment. (ONE abdominal CT increases your risk of ovarian cancer.)
Sorry, got on my soapbox there. Anyway, I am not telling you not to take your dd to the ER as every kiddo is different, but our peds GI on call docs are fabulous and sometimes calling them can help us avoid a long night in the ER.

WHen is her bday? My dd is pretty mature for her age so we just explain when we need to go on new meds, get IVs, stay at the hospital, get additional testing. I just tell her that most people don't bleed/have diarrhea daily/have pain and we will do what we can to get her better.
Plus bribes are good We were on flagyl (super bitter) and she got 20 prizes (one a day for 20 days) for each day she took her doses. Maybe in the beginning this will help with the pills? I also pick up a few extra things for when we are hospitalized and her infusion days. She does super well with IV's not (she still cries, but doesn't move a muscle as she knows it will be quicker and easier.

Please know that you could not have avoided UC. Did you mean that her constipation made things worse? If that is the case, hindsight is 20/20, right? We do the best we can with the info we have.

(((HUGS)) I know it isn't easy, but it will get better. You've found the BEST forum full of supportive people to bounce everything off...stick around!

Oh, and there are siblings here...a three year old and four year old (?) both with IBD...maybe mom will chime in too!
10-16-2011, 07:55 PM   #17
QueenGothel
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I just wrote a little diary of the pill situation. It is getting easier. My DD hates anything that taste like fruit except for actual fruit. No juices. no candy. She never liked it. So the gummies and chewables are both bad. She would rather swallow a pill I honestly think. Thankful shr drank a Danactive yogurt with probiotics today. Said it tasted like a shake and yogurt all in one. Whether that is enough idk. Probably not. I did buy the chewables and crushed one on a spoon and threw some yogurt on top. I don't want to be sneaky though bc she will start refusing the yogurt.

I like how you explained the tummy pains and bleeding. I will try that approach for sure. I am a total A personality so when I am not in control of a situation I can get upset in all varieties of ways.

About the constipation. My big sister is a RN at Karmanos cancer center and
kept raising concern over her pushing when having a BM. I did talk with the doctor about it. I just wish I would have saw the signs. Pale face, constipation, distended belly. If I would have given it more attention I really think it would not have been so severe. But I just kept pushing water like her doc said and gave her more fiber. Probably the exact opposite of what she needs now. Hindsight yeah I know. I just want to blame someone and I guess I am having a hard time right now.

When I first saw blood I called the ped. She had me bring her in. They gave me all the stuff to do poo analysis. It was the weekend. They said if blood pours out go to the ER. We did and they admitted her rather quickly. After they did some blood work, poo cultures and x-ray looking for a foreign object. My GI said if it ever gets that crazy I will skip the ER and he will have her
admitted right away.

It is all so much to take in.
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