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Crohn's Disease Forum » Parents of Kids with IBD » Nephew recently diagnosed


03-19-2013, 08:43 AM   #1
PR2013
 
Join Date: Mar 2013
Location: Greenville, North Carolina
Nephew recently diagnosed

Hello,

My 13 year old nephew was recently diagnosed wth Crohn's disease. We have interacted with the healthcare system for years trying to find out what was going on with him. He started out having issues with digesting his food and having to go to the bathroom very often. After that it started with severe indigestion and such. Recently we noticed that he was having so many instances of cramping and weight loss that we scheduled him to have an appointment. We have a family history but he is the first child to be diagnosed of my brother's children. He has to undergo more testing and he also has to spend time in the outpatient to have antibiotics administered. He is very self conscious of this when people ask him what is going on. We are unsure of what to tell him and how to help him express himself. We feel often that he just tell us what we want to hear when we ask him how it is going? Any suggestions are helpful...
03-19-2013, 09:17 AM   #2
Clash
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Welcome to the forum, PR2013. It sounds like your nephew has been through a lot, I hope he is feeling better soon. My son was 15 at diagnosis and at the beginning he didn't talk about his CD that much. He is 16 now and has been dealing with his CD fairly well but there are times when I know things are off yet if you ask his answer will be "I'm fine". He doesn't often want to discuss his illness but when he does I always listen and don't try to tell him how he should feel about it, angry, sad, rebellious, anxious, denial...all these are okay and that he will go through a spectrum of emotions at different times. Sometimes I feel he takes all this in, other times I get the standard teenage response "whatever, okay."

I would always keep the lines of communication open and if you feel he is really struggling with coping with the diagnosis or symptoms run it by his GI or PCP, they may recommend him talk to a therapist.
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C age 19
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03-19-2013, 09:24 AM   #3
Mehita
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Welcome the the forum, PR2013...

I'm sorry to hear about your nephew, but now that you have a diagnosis, you'll be able to get him the treatment he needs. This is a pretty big disease for a teen to swallow. At this age, they are smart enough to understand, yet still childish enough to not want to understand.

The most important thing is that he communicates his symptoms whether verbally or on paper in a log or diary or something. Often times the details can be really important like mucous in the stools or the exact location of stomach pain. Make sure he understands that if he doesn't communicate, he's going to continue to feel miserable. There are a lot of good meds out there that can help him.

When friends have asked my 13 year old why he was missing so much school, he would just say his insides are all messed up and leave it at that. It can be an embarrassing disease at this age so half truths are just fine in my book. At the same time, a couple of his closest friends knew more and had read up about the disease on their own. It was these boys who visited him in the hospital and kept his spirits up during the toughest of times.

What kinds of tests are being planned? Which antibiotic is he on? Why does he have to be outpatient for that?

I hope he's feeling well soon. Stick around the forum here and ask lots of questions. There are many great people here with a lot of experience and can offer advice and support.
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
03-19-2013, 09:43 AM   #4
PR2013
 
Join Date: Mar 2013
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Thank you so much for the feedback!! I have suggested to him to have a catchy comeback when people ask him why he is not in school! Nothing rude but something kind of cute but that will keep people from prying if he doesn't feel like talking about it.
03-19-2013, 09:45 AM   #5
PR2013
 
Join Date: Mar 2013
Location: Greenville, North Carolina
I apologize for not answering this in my previous post, I am unsure of what tests are being planned, but I will find out when I pick him up from school and take him to his appointment. I am trying to be informed and knowledgeable so that he will be willing to talk to me about his feelings and I can have a "little" understanding of what he is going through.
03-19-2013, 09:48 AM   #6
Clash
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It is a steep learning curve and most of us have turned into research monsters!! It's awesome that you are willing to go to whatever lengths necessary to ensure he feels comfortable in discussing his illness with you, I'm sure that will show through to him and help him in his journey with this illness!
03-19-2013, 09:53 AM   #7
Mehita
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Oh, and mom and dad are going to want to look into getting a 504 plan for him at school (sounds like he's missed quite a bit already?). It's a little tough to swallow, but Crohn's kids are covered by the Americans with Disabilities Act under section 504. It will allow him accommodations for missed school days, making up homework, rest periods, food, and many other things he may need depending on his situation.

Here's a link...
http://www.ccfa.org/resources/templa...-504-plan.html
03-19-2013, 10:00 AM   #8
Zoeymax123
 
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I understand how you feel I'm 26 just was diagnosed with it. I believe I have more of a chance of having it because my mom has too. I also have a history of depression as well. But having lines of communication does help and maybe a support group might help if he knows there is other have it as well. My mom was 21 when she had me. So she has a had for awhile she is in remission now. But I know that it can flare up. I hope he feels better soon. Tell him to stay positive think happy thoughts and keep him occupied while in the hospital like DVDs or card games or if he has an I pad like me tell him to look online for tenn support groups it might help when he is ready to talk
03-19-2013, 08:27 PM   #9
jmckinley
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So sorry your nephew has been diagnosed with IBD. It's a tough thing for a teen. Teen years are already riddled with uncertainty and trying to fit in. Add a disease that affects a part of your body that people only talk about in jokes and you get a difficult situation. He is very lucky that you are there and willing to help him go through this.

He needs time to process what all of this means. Just knowing you are there and willing to talk helps tremendously. He will talk eventually. There is IBD camp too. You are near Victory Junction (www.victoryjunction.org) that has a IBD camp in the summer or you can find a Camp Oasis. He can meet others his age there that can relate to what he is going through.

To kids he isn't close to, my son simply tells them he's sick/had a dr's appointment if they ask. His closer friends know what he has but he doesn't talk about it much to them, but they are supportive when he isn't feeling well. Most of his band friends know and they are a great source of support, picking things up for him when he's out or letting me know he isn't feeling well. They really take care of each other.

One thing he should know, this will change his life some, but he doesn't have to let it define him. My son is very active in band and volunteering. He's making good grades in AP classes. He snow skis/boards, ride dirt bikes....Your nephew can live a new "normal" life and have a great time. He will have to learn to handle stress and manage his disease, but he can have a full life and be happy!

Give him lots of hugs! And hugs to you!
03-20-2013, 05:44 AM   #10
Dexky
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Sorry about your nephew! It's good of you to be such a proactive aunt(I'm assuming)

What are the antibiotics for? What is the family history?

I hope they get him on a good path soon!!
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