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Have any of you taken your child to a therapist or counselor to deal with the emotions of IBD?  I'm trying to decide if I want to set up an appointment with someone.  She has excellent credentials and references; she was with the Cleveland Clinic and worked with their IBD patients and our GI gave me the referral.  My son, Matt, doesn't have any urgent issues that I can tell but dealing with Crohn's as you approach the middle school years seems like it would be really tough.  And I thought it might be better to have a relationship with someone prior to actually needing them.  I just wondered if anyone has taken their child to someone like this and what they thought... was it worth the money and time?  Our insurance will only pay 50%, I believe... and it's pretty expensive!

 Reply posted for mominmichigan.

I came back to your question, and I have to tell you that I have decided to return to therapy myself. I am having a hard time dealing with this, given the fact that my mother has an ileostomy from her UC. I guess I know more than than the rest of my family...maybe too much information. It's gotten to the point where it's really affected my mood, and that's not good at all. Anyway, I just wanted you to know that sometimes therapists need to go into therapy, as well. Hope all is well with your family. Lorraine

 Reply posted for lorraine.

Thanks for your reply, Lorraine... it's is good to have opinions from those "in the field" so to speak.  We saw the therapist and she does see the entire family.  We saw her the first visit all together and she sees the child alone for some part of the visit but also talks with at least one parent and the child every visit.  She also said that a good part of her work is with the parent, helping them to accept their child's diagnosis, deal with feelings like grief, guilt, anger that they may have.  I just assumed that child therapy would automatically include the parents... a bit naive of me maybe? 

I really, really liked this doctor.  However, that said, we didn't feel at this time we could commit the time and financial resources it would take.  So, we're putting it off for the present (although, if time and money were irrelevant, I'd definately have gone ahead and started seeing her with my son.  I can see the benefit even if there aren't "big" emotional or adjustment problems present at the time of diagnosis.)

 Reply posted for mominmichigan.

As a therapist, I think that I am having a harder time dealing with waiting for my son's probable diagnosis than he is. My mom lost 93% of her colon many years ago, and I realize that I have a lot of feelings wrapped around that. I am not a fan of child therapy. If I am not being too forward, may I suggest, family therapy, so that you can all get on board to deal with this. It IS a family issue. If he lives at home, he will probably feel that you are hovering over his eating. You ALL have feelings.After all, you are his mother. My son is 24 and lives away from home, and I am having a horrible time coping with this. I guess, this is what family is.

 Reply posted for Neesie.

Just thought I'd let y'all know we've decided to go ahead and see the therapist with our son (age 11... he had a birthday last week!).  Last week was really hard... with both physical and emotional issues.  Plus, due to all his absences, it's time to start pushing the school for a 504 plan, I think and having him talk with someone before I sit down with the school will help me have more confidence as I approach the school I think (just in case it doesn't go smoothly... you hear such horror stories from parents!)  Anyway, just wanted to thank you all for your input.  I'll let you know what we think about it.

 Reply posted for mominmichigan.

Hi,

might be joining the conversation a little late, but my son saw a therapist last year after his diagnosis. We had exhausted our medical aid (insurance for you) and had to pay for it. Expensive but v worth it. His overwhelming emotion seemed to be anger, at everything. After his first sesson he came home with 2 balloons. An over inflated red one for anger and a slightly smaller one for sadness. Broke my heart.

But talking it through with someone else really seemed to help, she helped hm deal with the routine bloodtests and with the separation anxiety. He is in a MUCH better place now. He is only 9 and all this was done with play therapy.

I am a firm believer in allowing the emotion a space to vent. Children understand so much more than we think and pick up on so many unsaid things. I know that my overwhelming fear and anxiety played a part in the stress, but it was very hard for me to accept.

I will definitely consider therapy again. That said, in South Africa we don't have the camps and resources you have in the States, so we had to make a plan.

 Reply posted for Lizzies Mom.

I have thought of starting a support group (if not for him, then for ME!)  But right now, I'm just a bit overwhelmed... but who knows, I may just roll the idea around in my head a while and do just that. :)

Thanks for your good thoughts for my son and family.  Right back at ya!

 Reply posted for mominmichigan.

I was thinking about your post after I logged off earlier and thought of something else.   If your pedi gi's office doesn't have a support group, why not inquire about starting one??    I'm sure their office has more than your son's health they are managing.  It would be a good way for him to meet other kids just like him and for you to interact with other parents in the same boat as us.

FYI, Camp Oasis was amazing!!!   This year was the first year my daughter was old enough to go.  I was hesitant on sending her and it was hard for me to do.   But after I over-analyzed it (like everything else), I came to the conclusion I would be extremely selfish, and doing her a dis-service, if I didn't.   Trust me, I had tears rolling down my face, but it was the best thing I could have done.   She had the time of her life!  You bet she'll be there for many years to come!

I wish you and your family my best

Lizzies Mom

 Reply posted for Lizzies Mom.

Thanks for your thoughts on this, Lizziesmom.  Matt is missing so much school he is already feeling the stigma of being "that kid who's always absent".     I think that is a valid concern... kids, especially during those middle years, sometimes are quite mean to people they perceive as different.  Also, the kids who is "different" sometimes takes the opinions of his/her peers a bit too much to heart!  You are so fortunate to have the support group through your Ped. GI!  What a great service to provide patients.  I am hoping my son will go to Camp Oasis next summer and have the chance to meet other kids who are living with IBD.     In our school system the middle school (and high school for that matter) counselors are the ones you work with to obtain makeup work, missed homework and other academic concerns which you might run into dealing with a crhonic illness.  Or that's the way it's handled when it is a "documented" situation. 

Anyway, thanks for your thoughts... lots and lots for me to think about! 

 Reply posted for mominmichigan.

I have a daughter who is just finishing middle school and can tell you first hand it is a challenge.   She is my daughter w/o CD.  

My younger daughter is the CD patient and I have actually taken a different route and I will share my reasoning.  I try my best to keep the disease out of school.   What I do is speak personally at the beginning of each school year with her primary teacher and school nurse.  We have been dealing with the disease for almost 6 years and I didn't want her to be "labelled" by teaching staff, peers, anybody.   I want her to have as "normal" a childhood as I can provide.  I had always been fearful that she would be known as the kid with that DISEASE.   As you know, kids can be very, very cruel.

However, recognizing coping with a chronic condition takes its toll on everybody differently, I have turned to a support group (through her pedi gi's office).  They have a social worker on staff and the kids meet once a month for 1 1/2  hrs.  This gives the kids time to vent and brainstorm and also gives us parents time to exchange ideas, tips, recipes, whatever.  I consider us very fortunate to have a social worker on staff and am not sure if every office offers it.  There is no fee and the kids are all in similar situations so they don't feel like an out-cast.   The SW is also available on an as-needed basis, which is nice for instances such as change of school, home, or any other time there is a need.

Middle school is definitely different, but it is certainly is survivable!

All my best.

Lizzies Mom

 Reply posted for mominmichigan.

Thank you for all your replies.  I think I will make an appointment to talk with the school social worker about it now.  Matt will go to middle school next year and I know there have a very good counseling department there.  I didn't know if that would really be enough but sounds like it is helping others so I think I'll try that first.  Hopefully the counselor in his school now is good and can talk with him now.  I am so glad to have found some other moms who are going through these things too.

 Reply posted for mominmichigan.

Hi:  My daughter has also seen the school social worker and she has been an absolute blessing.  She started a new school and had all the bathroom fears and fears of staff not knowing anything about her and coping.  With the stress, it started bringing on symptoms so I made an appt to see the counselor there since her issues are school related, even with missing days of school and talking to friends about it.  Since they are with our children at school, it seemed like the most logical first step for us as my daughter gets very down when she starts having symptoms and has to miss school.  The counselor there is great and gets her from class once a week to touch base and talk to her about her fears and anxieties.  Since this has happened, she is so much better in spirit.  I hope you have a great counselor too.  Her other school also did, but only went through 4th grade so now we are in a different school. 

 Reply posted for mominmichigan.

Hi.  I wanted to let you know that our social worker is also part time at our school but I have her email and personal number so sometimes my son will go 2 weeks before he gets to see her but if I feel like I need her sooner I just drop her an email and she makes sure to see him.  I think I got lucky at our school, the social worker is very nice.  She also has a son exactly my son's age and I think it makes her more sensitive to the situation.  I hope it works for you. Keep me updated. Take care. 

 Reply posted for loving mother.

Hey.... I did see your reply but couldn't get in to say so earlier.  Eric (my hubby) really thought the conference in Plymouth was well done and informational.  He brought home a lot of good handouts for me to see too.  It was also a good chance to talk to the reps from Remicade (since our doc has talked about that possibly being Matt's next step).  They had a lot of information about things to ask the doctor and how to get the medication if your uninsured. 

Seeing the school conselor is a great idea.  I'll look into that at our school.  We do have a counselor at least part time but the position is always on the chopping block. What you describe in your child is what I'm seeing in Matt... sporadic sadness and resentment about all of this Crohn's stuff (although I am suprised how well he's handled it too... I mean, I didn't handle my own diagnosis of Lupus as well as he is and I was a grown up!)  Oh, well... so many things to consider.   

 Reply posted for mominmichigan.

Hi again!!  I was not sure if you saw my reply about the  conference in Plymouth.  I was there and it was helpful.  They did talk about the flu vaccine and docs who were there recommended it.  About this new subject about seeing a counselor.  My son sees the social worker at school.  He was already familiar with her because she does presentations to classes about bullying and peer mediation and stuff like that.  Last year when he got sick I asked if he can start to see her on a one on one bases and she was happy to see him.  It has been a year and he is not comfortable talking about having Crohns and sometimes he gets mad about having to take medicine and such. She has helped with alot of this type of stuff.  That may be a route you make want to consider if your son's school has a social worker.  Hope that helps.  Take care.