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01-16-2012, 05:52 PM   #1
Devynnsmom
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Tantrums and rages

I am wondering if any of you have any experience with tantrums or rages in children with IBD. My daughter was *unoffficially* diagnosed in Dec 09 at 8 years old. Since she was about 18 mos old, around the time most of her symptoms started she had horrible *tantrums*. By the time she was about 6 I begged my family dr to send us to someone, anyone who could help us. He sent us to a child psycologist who said there was nothing *wrong* with Devynn. She never saw her act out, only saw the sweet smart little girl that we all knew she could be. When we started seeing her GI I and they asked the 100 million questions they ask... I asked about tantrums and rages. Her dr said kids often have tantrums and rages because they are in pain, feeling unwell etc. Once my daughter started on her Pentasa, the tantrums stopped. Every now and again she is miserable, and sometimes VERY miserable. But the tantrums for the most part have stopped. Until today...

*I will start by saying she is flaring right now, or something is going on. Last Sat (Jan 7) the skin on her toes started peeling. I took her to the family dr who said it looked like a contact allergy, gave her HydroVal to use for a week and sent us home. I showed a friend who has Crohn's, the pics of Devynn's feet and she told me to contact her GI because she has had the same thing, and it is the Crohn's. I called and they are scheduling her for another upper and lower scope. It is tentativeley booked for Feb 23, but they are trying to get her in sooner. I sent them the pics today and they are very concerned and want her in ASAP*
After school today she was going skating with a friend and the friends mom. I was to meet them there after I dropped my daycare child off at home. I was back at the rink within 20 min and she asked if she could take her snowpants off. I told her to just skate, because they didn't have much time. She got on the ice, and was back off sitting in the penatly box within a few min. I told her to go ahead and take the pants off, she still had 30 min.... She lost it. She started screaming and yelling and slamming the penalty box door. I told her get dressed we are leaving. I don't play games with tantrums, she always loses privlidges, or has to leave wherever we are. She refused. Flat out. Screaming, telling me how much she hates me, how I blame her IBD on her... it was awful. She threw a piece of crumpled up paper on the ice, so I told her to pick it up. She did and threw it, hitting a lady putting her skates on. I appologized and again told her to get ready. She took her helmet off and threw that as well. She took her skates off and refused to put her coat or hat on. Good thing we live 2 blocks away.
I have NO clue what caused the blow up. If she is unwell, I understand but she cannot treat people this way.
Has anyone else dealt with this? Like I said, its been about 2 years since she has acted even close to this. If so, any advice? She has lost all her privlidges, she will not be skating or having any friends over anytime soon, and I took her TV, CD player, video games etc out of her room.
If you made it this far, you deserve a cookie
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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
01-16-2012, 11:19 PM   #2
kimmidwife
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My daughter doesn't throw tantrums but she does get very angry and nasty and acting out at times. I think it could be the stress these kids deal with. I am like you though I don't put up with it. I lay down the law and say this is how it is.
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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.
01-17-2012, 06:42 AM   #3
DustyKat
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Hey Devynnsmom,

I haven't been through what you are experiencing as my children were older when diagnosed. Sarah certainly went through a bad patch during her last year of school, rebellious and so on. She was in remission and I really think, for whatever reason, everything just came to a head. The disease, the differences she had to everyone else...

I ended up having her referred to a psychologist, I just thought it would be for good for her to talk to someone that would listen and understand or be a sounding board if that was what was needed. The doctor may be right and it is to related pain and pain can be so very debilitating but as you say, she can't treat other people that way. Perhaps it is time to revisit a psychologist again. She is angry and frustrated about something and if she isn't going to open up to you maybe she will to someone else.
Does she have any contact with other children her age, via forum or IRL, that have IBD?

Just on the pain side of things again, does she speak to much about her disease and how she is feeling? If not perhaps she is having trouble articulating what she feels and how she is feeling, it then all builds up and then Bam!
The hating you side of things is you being her comfort zone. She knows she can say that to you and yet you will continue to love her unconditionally.
I went through behavioural issues with Matt when he was in primary school but at that point he didn't have IBD, there were other reasons. He was the dream student at school but the minute he hit the front door he would meltdown. Over time I learn't to stand back and let him go, mind you this only occurred at home. If he came in ranting about the injustices of school I would just continue what I was doing and listen until he finally stopped and he would then walk away and settle down. If he came in and slammed his bag down and stomped away to his room I would let him go and eventually he would emerge in a better frame of mind. I understood that we were his comfort zone, a place to say and behave in a way he wouldn't dream of doing anywhere else. I certainly didn't tolerate anything that was over the top but I also felt it was important for him to be able to get it out of his system and move on.

Good luck Mum, I hope you are able to get to the bottom of it and as things are brought under control she starts to feel better within herself as well.

Dusty.
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01-17-2012, 08:20 AM   #4
Devynnsmom
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Thank you Kim. It's so frustrating. I know she must be feeling rotten and I am always there for support, love, whatever she needs. I guess they lash out at the people they know will not turn their backs.
01-17-2012, 08:33 AM   #5
Devynnsmom
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Thank you Dusty. I am going to talk to her dr's about finding someone for her to talk to again. When we were at the GI in Dec, I asked if they could find someone. I know she's hurting with whatever is going on inside, as well as the pain of losing my Mom in July. She was like a 2nd mother to her. They do have IBD support groups at her hosp, but she's too young. They are from 13-18 and she's only 10.
She doesn't talk to any kids her age with IBD. We don't know any in RL and I have not found a forum, or anyone with a child with IBD that she could talk to. I just found this place last week. I'm not sure how I didn't find it two years ago, I really wish I had. Do you know of a forum or anything I could try?
She does talk to me about it. It usually ends up with her in tears. She tells me she hates her disease. She asks why she has to have it. etc. I always try to reassure her and tell her that we will get it under control and she will feel better. But she knows its a lifelong condition. She was very upset Sunday night, talking about her upcoming scope. She told me she was scared and I told her I know she is scared. I told her I was scared when I had to have one too, but it really wasn't as scary as I had made myself believe. I asked her if she remembered her last one and she said no. I told her she was so scared, but when it was over she asked "Is that it?" She kind of giggled and I promised her we will take DVD's and stuff to keep us busy while we are waiting. She seemed ok with that and I think it was one of the only times we have spoke about her IBD without her ending up in tears.
I usually let her rant at home to a point as well. But when we are out in public, and she is being rude and yelling etc, it's time to leave. The rink we were at is a block from her school, and there were quite a few kids from her school there. By the time we left, nobody was skating. They were all watching and listening to what was going on
I want her to feel better, physically and within herself. I can't imagine what it must feel like.
01-17-2012, 12:59 PM   #6
kimmidwife
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It is so hard for us and them! Getting her a therapist is a great idea. Caitlyn sees an art therapist. I highly recommend one if you can find one
01-17-2012, 01:28 PM   #7
Devynnsmom
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Thank you, her doctor is supposed to be looking into it. I have also been in touch with the Crohn's and Colitis Foundation of Canada, to see if they have any kinds of support groups etc.
01-17-2012, 01:48 PM   #8
DustyKat
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I would start with Crohn's and Colitis Canada and also look to the closest children's hospital with an IBD unit, they generally have support services and groups as well.

Good luck hun, it's so hard to see our kids dealing with this. What we wouldn't give to take it all away, ay?

Dusty.
01-17-2012, 02:08 PM   #9
Devynnsmom
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Thank you Dusty. Yes thats for sure! I've told her if I could take it away from her and have it myself instead, I would. In a heartbeat.
I contacted Crohn's and Colitis Foundation of Canada this morning. I actually contacted them about a week ago asking for some information about an upcoming walk in June. They replied and I replied back this morning asking if they know of any support groups for children. I haven't heard back yet, but my fingers are crossed. Devynn is in the best Children's hospital in Canada, The Hospital For Sick Children. Their support groups are for 13-18 year olds. I guess there are not enough young kids being diagnosed/treated? I'm hoping between the two of them, we can come up with something.
01-17-2012, 07:22 PM   #10
Tesscorm
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Hi Devynnsmom,

It certainly is difficult to watch your child when they're not well and not know what will help! My son is also a patient of Sick Kids in Toronto, although he is 17 years old.

Make sure you are on HSC's mailing list for events. They do have some events for younger kids and families, in the past few months they had a skating/hockey event at the ACC and I believe they had a bowling event as well.

This link will show some of the events (but I don't believe there is anything scheduled now for your daughter's age, at least not as part of the IBD clinic) http://www.sickkids.ca/IBDacademy/Ne...nd-Events.html

Good luck
01-17-2012, 07:31 PM   #11
Devynnsmom
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Thank you! I have bookmarked that link. Her dr's have never told me about any mailing list or anything. I will have to ask them about it.
01-18-2012, 05:08 PM   #12
Tesscorm
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Hi Devynns mom,

I just received the email below re an event at the HSC - will provide you with an email to get on the mailing list.


From: Rsvp Ibd Sickkids <[email protected]>
Date: Wed, 18 Jan 2012 11:36:01 -0800 (PST)
To: <Invalid address>
ReplyTo: Rsvp Ibd Sickkids <[email protected]>


Sickkids IBD Program presents
an educational evening for patients and families:

The Dr. Anne Griffiths Show
with special guest
Dr. Bob Baldassano
Director, Center for Pediatric Inflammatory Disease Children’s Hospital of Philadelphia
Wednesday February 1,2012 at 7 p.m.
Daniels Hollywood Theater, Sick Kids
RSVP at [email protected] or [email protected]
01-18-2012, 05:56 PM   #13
Devynnsmom
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Thank you! I saw that and was going to reply I will do that now.
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