Helping a child cope with chronic disease?

[tinamn]

On top of all the other stressors (alcoholic husband, his job loss, drama-seeking sister and her divorce… I could keep going but I think you get it!), my 5 yr old was diagnosed mid-August with ulcerative colitis. It was a long month prior, fighting with doctors who insisted she must have caught some kind of tummy bug, or maybe is just lactose intolerant… but we finally got answers.

Overall, I’m generally relieved… when your child is bleeding and gets almost to the point of needing a blood transfusion, you know that likely the answer isn’t going to be something easy… but this is manageable! However, I’m having a hard time helping her adjust to things - she is overly sensitive to pain (most kids are, but she has been particularly hypersensitive about touch/pain things since she was born). So we struggle with repeated blood draws, IVs, the pain she has during bowel movements, etc; but also she doesn’t understand why she needs medicine daily, why she is “different” and so on.

I have asked the doctors for resources to help her and us through this, but they tell me we’re doing a great job and as she’s 5, this will become her new normal eventually and it’ll be no big deal.

Does anyone have a child/ren with chronic diseases who can attest to this? Or point me to resources that have been helpful? Any personal advice on how to “weather the storm” so to speak? I have days when I feel like I’m drowning in the stress of everything, but with 4 kids and a full time job, there isn’t really ANY time to step back and just breathe.

 

[CthgeDelendaEst]

As someone who’s struggled with UC for 16 years, your attitude is a bit Pollyanna-ish. UC is a serious disease. Some people have mild symptoms, go into remission and have few problems thereafter. Others are in constant pain, live in perpetual fear of losing bowel control, and eventually require surgery to remove the colon. Read up on UC and it’s sister disease, Crohn’s.

You daughter is young, but counseling and support groups can help as she gets older. But most of all, you need to understand her disease and not pretend that what she is facing is minor. It’s not.

 

[tinamn]

I never said I didn’t think it was a serious disease (and believe me… I’ve read a TON about the disease). I just believe that of the things it could have been, this is probably one of the “better” things. I know she has a long road ahead of her, but many people get their UC into remission, and there is no reason to think that she won’t be one of those people. Even if she requires surgery, that doesn’t mean her life is ending - she should be able to live a long and fulfilling life. My hope is that I can help her learn to live with her disease and be positive about life, despite the extra difficulties she may face - and because I don’t know how to do that, I’m asking for advice

 

[Cupofkindness]

Trust your doctor. Serve food that is nutritionally optimal. No junk food. Her gut is compromised and you have to expect that not everything will be absorbed.

Since UC is an immune disorder, please educate yourself on the connections between various immune diseases. I hope you will see your doc often during the first year.

How you manage stress will teach your daughter how to manage stress. A stress-free-as-possible life is key to managing symptoms. It sounds like this will be your biggest challenge. You must mirror joy, hope, and peace to this child. When you find yourself overwhelmed with life, turn immediately to God: “Jesus I trust in you.”

Stress management and nutritional management plus lots of exercise are key. To help her cope, you have to successfully treat the symptoms or she will wind up in the hospital. For the next ten years, how you cope is how she will cope. Try to find a sport that you can afford, and that she can do well in. Look for a summer camp type program for kids who have gastro diseases. Here in Texas, we have a program for kids with diabetes, perhaps there is a UC clinic/camp somewhere, even if it is in a children’s hospital in a nearby city for a few days a year: take her there so she can grasp that she is not alone and that she has tremendous support. I have a child with UC and a child with Crohn’s. I’d pick UC over Crohns anyday, a far easier disease to manage.

 

[tinamn]

We are working with a dietitian, and working closely with her doctor to figure out the correct medication for her. It’s been slow going, but we will figure it out.

Our biggest challenge is that every doctor within 100 miles insisted there was nothing wrong with her, so we have to take her 200 miles to a Children’s hospital. In August we had to be there 3 separate times, so it has been quite a crazy time trying to keep up with work, find appropriate care for the other three children, and also just deal with the very new diagnosis.

There is a camp in our area, but she will not be old enough for a few more years. I’ve gotten connected with the local chapter of CCFA, and we will be participating in a fundraiser with them later this month.

I am not sure what else we can do, if anything

 

[Cupofkindness]

Yes, its overwhelming and sort of depressing. I read a book called Breaking the Vicious Cycle by Elaine Gottschall but it seems that many of these sort of books suggest a cure through proper nutrition, and the best that can be hoped for is long-term remission, this I believe. You can’t fight immune diseases. It’s not like cancer, you just have to follow the treatment plan. I hope you don’t feel guilty for her condition. Take care of yourself, you need to an example. God love you and protect you and your family.