The Emotional Needs Of A Child With Crohns

[DustyKat]

This is a place where parent's, carer's or other forum members can post links related to the emotional needs of children with Crohns. It is also a place to discuss your child's emotional needs or how to approach discussing their disease with them.

I will start by posting the following links...

This is a webcast discussing the emotional needs of children with Crohns:
http://www.everydayhealth.com/crohns-disease/webcasts/the-emotional-care-of-a-child-with-crohns-disease-transcript-1.aspx

This article suggests ways of talking to your child about Crohns:
http://crohnsinsight.com/crohns-insight/talking-to-children-about-crohns/

This article discusses how a parent with IBD can approach and talk to their child about their disease:
http://www.nacc.org.uk/downloads/factsheets/TalkingToChild.pdf

Please post other articles you may be aware of at present or items of interest you may come across in the future. Remember, this is also a place to ask advice, should you feel the need.

Dusty.

 

[DustyKat]

When Your Child has Inflammatory Bowel Disaese

http://healthlibrary.epnet.com/GetContent.aspx?token=0a1af489-5b4c-4f2d-978e-3930be13b1f6&chunkiid=21082

 

[DustyKat]

Kids Coping With IBD Video

Excellent video...kids talking about their symptoms, diagnosis and how they are coping with their disease.

http://medicalnewstoday.healthology.com/hybrid/hybrid-autodetect.aspx?content_id=1836&focus_handle=children-ibd&brand_name=medicalnewstoday

Dusty.

 

[kimmidwife]

Thanks for Posting this. I read the webcast and just ordered the book they reccomended Toilet Paper Flowers for my daughter.

 

[DustyKat]

Thank you for posting! It reminded me I had a books thread that I hadn't stickied.

Dusty.

 

[Johnnysmom]

Thanks Dusty!! You constantly impress me with how knowledgable and caring you are towards others. I can't tell you how much your information has helped me cope with my sons disease.

Also, we were at G.I. yesterday and he wants my son to see a psychiatrist to get on some anti anxiety meds. My son has been having a racing heart and feeling agitated. He had a mildly prolonged QT on his EKG so we have to be cleared by a pediatric cardiologist first before he can take anything. I really don't like the idea of him being on yet another medication and I feel some of this is a side effect of prednisone (which he is tapering) and I think we should give it some time and see if we can bring it under control in other ways. But I respect what anxiety can do with this disease. Any parents going thru something similar? Any good advice?

Thanks for listening!!

Tiffany
Mom to Johnny
Dx Crohns Oct 10 2011
30 mg Prednisone
50 mg 6mp

 

[DustyKat]

Hey Tiffany,

No issues here with anxiety but Prednisone certainly can cause the symptoms that you have mentioned

Did he have these issues before commencing Pred? If not I think I would like him to be off the Pred to see if those symptoms settled before commencing an anti anxiety.
I guess if he did have symptoms prior then Pred may well exacerbate them too.

Good luck with the Cardiologist, I hope all goes well!

Dusty. xxxxxxxx

 

[Dexky]

He's an 11 yr old kid and he's been hit with this life-altering dx just a few weeks ago. Unless they can point to some physical cause for his heart racing (blood pressure or something), I'd want him off the pred first.

From reading pred experiences on here and living it with EJ, I think everyone is agitated on it. EJ was a terror on it. Adults seem to find more productive outlets for the extra energy.

 

[Brian'sMom]

I would agree with Dusty and Dexky...That prednisone might cause anxiety feelings. For my son 30 mg seemed too high for him. He didn't do well emotionally on it and it didn't help with his crohn's either.

(We only did prednisone twice with our old doc...Our new GI doctor doesn't like putting young kids on it)

 

[Emily]

I think this is a really great thread Dusty. As someone who was the child in the situation, these resources make me happy to see. I think my parents/school/friends/siblings just didn't get it a lot of this aspect of Crohn's and it affected a lot of aspects of my life. Anyway, as all you parents know, this is super significant. Thanks for posting

 

[DustyKat]

Thanks for popping by Emily.

It is so fab to have the perspective of one that has been through what all these articles and videos talk about. :thumleft:

Dusty. xxx

 

[clnrun]

Thanks for all these resources being posted and pinned. It is wonderful to find a community of fellow parents trying trying their best to help their child(ren) through a difficult disease.

 

[DustyKat]

Chronic childhood illness – managing the emotional impact

Excellent article discussing how chronic illness impacts on the child affected and their family. Topics include...

- What is a chronic childhood illness?
- Impact of chronic childhood illness
- Effect on the Child
- What parents can do
- Effect on the family
- Ideas for supporting the family

http://www.cyh.com/HealthTopics/HealthTopicDetails.aspx?p=114&np=304&id=2578

Dusty.

 

[LittlebitsMommy]

My son is on Pred stepping down Wednesday to 30mg. He has had a rapid heart rate of 110-135. For the last 5 days. His heart rate usually is really low ranging from 40-52. We took him to the ER on Thursday and they did EKG and chest xray and said everything was okay. We went to GI today and he acted like it wasnt a big deal and wasnt sure what was causing it. He said Kota needed to be more active but he hasnt felt like it. I am sorry but I also worry if he is to active his heart rate will rase even more because the 135 was him just sitting still. He said we needed to watch his weight and not let him snack. But he says he is always hungry and gets upset because he knows he shouldnt be hungry all the time. I asked the doctor if he could tell me a healthy snack for when he does want a snack since he cant have fruit and veggies. He said no he didnt know any

 

[clnrun]

Hi, LittlebitsMommy.

I don't know about the heart rate issue so I can't respond to that. I can tell you are not satisfied with the doctor's response about that and also about the eating. I know my son was hungry all the time when on pred. His appetite greatly reduced when he got off of it. He would also say things like, "I'm hungry even when my stomach is full." So he'd be full and hungry at the same time. Very frustrating. Our doctor said no raw fruits or veggies (except bananas and peeled grapes) but cooked ones are okay. You may want to check if he can have cooked veggies. Also, there are tons of helathy snacks and I am surprised the doctor would say he "didn't know any." If the cooked veggies don't work out there are others. What about yogurt (if he can have dairy), applesauce, a hard-boiled egg, string cheese (again dairy), jello (okay, not too healthy but lower in calories than most snacks). I hope you find some workable options!

 

[clnrun]

My sig line was dated with old drugs my son is no longer on. I have updated it.

 

[DustyKat]

Both weight gain, tachycardia (fast heart rate) and palpitations are well known side effects of Prednisone. How does the GI not know that! Grrrrrrrrr. If the weight has been gained whilst on the Pred then he will likely lose it, and the voracious appetite, once he is off it.

Go with the flow hun, if he is not up to doing much then let him rest, I dare say his body needs it.

Good luck and I hope your son is soon feeling better! :hug:

Dusty. xxx

 

[LittlebitsMommy]

Thanks
I am letting him rest. We both laid down today and took a short nap. It was nice

 

[DustyKat]

Priceless...

 

[DustyKat]

Bump.

 

[jenstaci]

My 9 year old son was dx 2 weeks ago with Crohn's and had no appetite before and lost a lot of weight and blood (now anemic) But since he has started the Pred 2 weeks ago OMG is all I can say!! Before I got up this morning he had cereal, a turkey sandwich and a chicken patty. I have never seen him eat like that. He needs all he can get right now, so I dont care but Im hoping that his appetite will calm down when he gets weaned off of it. He just started Asocol and Imuran, but from what im understanding these things take some time to get into his system, so he will be on the pred for a little while more! Anyone been on that regime with their little ones and can tell me about it?

 

[DustyKat]

Hey jenstaci,

Pred can indeed cause the steroid munchies! It will settle though, as do any other side effects in the weeks following its cessation.

When doing the Pred/Imuran treatment path the regime and justification for it is...Start the Pred and Imuran at the same time. The Pred will hit the inflammation hard and fast with the idea being it will induce remission. Generally a course of Pred will take at least 8 weeks from go to woe. Imuran on the other hand takes at least 3 months to become fully therapeutic so as the Pred is just about weaned or finished the Imuran should take over where the Pred leaves off and maintain remission over the long term.

My two have never been on 5ASA's (Asacol etc) but they are anti-inflammatories and generally pretty inoffensive. My son was on Flagyl, an antibiotic, along with his Pred and Imuran.

Dusty. xxx

 

[hawkeye]

Great thread Dusty - the emotional aspects often take a back seat to the physical aspects.

 

[hawkeye]

He just started Asacol and Imuran, but from what im understanding these things take some time to get into his system, so he will be on the pred for a little while more! Anyone been on that regime with their little ones and can tell me about it?

I was on this when I was first diagnosed (1990/1991 @ 17). Tapered off the pred, but Imuran and 5-ASA have been maintenance meds ever since. The pred side effects go away wih the dosage being dropped and I haven't had any issues with the Imuran or 5-ASA. I ended up being on a low dose of pred (2.5-5 mg/day) once thngs were controlled for a couple of years after tapering down from the high dose.