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Gastroenterology (Expert Forum)
My daughter age 12 years 7 months was just diagnosed with Chron's
Answered by
Kevin Pho, MD - Internal Medicine
Kevin, M.D.
Boston - MA
This forum is for questions regarding Gastroenterology issues such as Acid Reflux (GERD), Barretts Esophagus, Colitis, Colon/Bowel Disorders, Crohn's Disease, Diverticulitis/Diverticulosis, Digestive Disorders, IBS, Stomach Pain.
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My daughter age 12 years 7 months was just diagnosed with Chron's
by iriss, Jun 27, 2003 12:00AM
I am devastated. The Crohn's probably showed it's first sign a year ago when she failed to grow more than an inch (we are a tall family). Growth retardation persists and she has had other signs (joint inflammation, diarrhea). Tests were done: she has anemia, hypoalbuminemia, positive Guiac, and narrowing in the small bowel on an Upper GI. She will be seeing a ped gastroenterologist next week. The pediatrician said she has a classic case of Crohn's and it manifests itself subtly in kids. The bad part is that I am a registered nurse and know full well what Crohn's entails. It appears to be a horrible, chronic illness and I have been crying my eyes out (no mother wants to see her child suffer). Stool for ova and parasites and bacteria were all negative and the doctor said it's Crohn's.
Please be truthful, doctor. I will appreciate truthfulness most greatly and I don't want sugar coating. Please tell me what percentage of people with Crohn's will lead suffering, pain and hardship and what percentage will barely know they have Crohn's. I don't want my baby to suffer her whole life and I cannot take the pain I am going through. I will see a psychiatrist for myself so that I can be strong for my daughter.
I envision rough teen years with being on prednisone and its disfiguring side effects and a horrendous adult life with fissures, surgeries, pain, fistulas and god knows what else.
Please be truthful with me doctor..I want the straight truth.
Your help is so much appreiciated. I feel the same as someone else might feel if their child was just diagnosed with cancer.
Thanks
Please be truthful, doctor. I will appreciate truthfulness most greatly and I don't want sugar coating. Please tell me what percentage of people with Crohn's will lead suffering, pain and hardship and what percentage will barely know they have Crohn's. I don't want my baby to suffer her whole life and I cannot take the pain I am going through. I will see a psychiatrist for myself so that I can be strong for my daughter.
I envision rough teen years with being on prednisone and its disfiguring side effects and a horrendous adult life with fissures, surgeries, pain, fistulas and god knows what else.
Please be truthful with me doctor..I want the straight truth.
Your help is so much appreiciated. I feel the same as someone else might feel if their child was just diagnosed with cancer.
Thanks
Doctor's Answer
by Kevin Pho, MD, Jun 30, 2003 12:00AM
, Jun 30, 2003 12:00AM
Hello - thanks for asking your question.
I am sorry to hear about the diagnosis. It is great to see such support from our commenters and I strongly encourage that you follow the leads that they have suggested.
Here are some facts that you have requested about Crohn's disease in the pediatric population:
**20-25 percent of Crohn's disease (CD) is diagnosed before the age of 20.
**10-20 percent of patients have a prolonged remission after initial presentation.
**Children can develop unique complications, including growth failure and delayed puberty. Clinicians caring for children and adolescents with one of these disorders must treat the underlying disease and its complications and must also carefully monitor linear growth, skeletal development, and puberty.
**The most common symptoms are abdominal pain (95 percent), weight loss (80 percent), diarrhea (77 percent), hematochezia (i.e. blood in stool) (60 percent), and growth failure (30 percent). Other symptoms include arthritis and perianal disease (i.e. abscesses and fistulae).
**Treatment is primarily based on the Pediatric Crohn's disease activity index. A variety of medications should be tailored in conjunction with your pediatric gastroenterologist.
As you can imagine, Crohn's disease is challenging in an adolescent and psychosocial support is imperative. Several outstanding support groups can be found in the comments below. Make sure that psychosocial support is addressed when you consult your physicians.
Followup with your personal physician is essential.
This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.
Thanks,
Kevin, M.D.
Bibliography:
Bousvaros. Clinical manifestations and diagnosis of Crohn's disease in children and adolescents. UptoDate, 2003.
I am sorry to hear about the diagnosis. It is great to see such support from our commenters and I strongly encourage that you follow the leads that they have suggested.
Here are some facts that you have requested about Crohn's disease in the pediatric population:
**20-25 percent of Crohn's disease (CD) is diagnosed before the age of 20.
**10-20 percent of patients have a prolonged remission after initial presentation.
**Children can develop unique complications, including growth failure and delayed puberty. Clinicians caring for children and adolescents with one of these disorders must treat the underlying disease and its complications and must also carefully monitor linear growth, skeletal development, and puberty.
**The most common symptoms are abdominal pain (95 percent), weight loss (80 percent), diarrhea (77 percent), hematochezia (i.e. blood in stool) (60 percent), and growth failure (30 percent). Other symptoms include arthritis and perianal disease (i.e. abscesses and fistulae).
**Treatment is primarily based on the Pediatric Crohn's disease activity index. A variety of medications should be tailored in conjunction with your pediatric gastroenterologist.
As you can imagine, Crohn's disease is challenging in an adolescent and psychosocial support is imperative. Several outstanding support groups can be found in the comments below. Make sure that psychosocial support is addressed when you consult your physicians.
Followup with your personal physician is essential.
This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.
Thanks,
Kevin, M.D.
Bibliography:
Bousvaros. Clinical manifestations and diagnosis of Crohn's disease in children and adolescents. UptoDate, 2003.
I am sorry to hear of the dx. there are some really good support groups out there and on line. you can check out the www.ccfa.org site for adult and kids meetings near you. ibd.patientcommunity.com and www.ibdsucks.com (has a parenting and kids folders) are 2 good informative sites. and I think there is a yahoo club for teens with IBD. you must remember tho, as you are going visiting websites, that the VAST majority of IBDers don't even visit sites because the are happy, healthy and out living thier lives. even a big chunk of those on the boards are doing well but are there because they want to help others. part of the frustration with this disease is the unpredictability. you'll be surprised to hear how many people have an initial flare that gets controlled with meds and then are able to maintain that remission for 10 or 20 years.
now for the GOOD news. going undiagnosed for years, even decades is the 'norm', so getting dxd early will help tremendously. getting proper medical treatment can help AVOID all the nasty stuff. Prednisone is NOT the drug of choice and it's been shown that it's not effective for maintaining remission. she probably won't be able to avoid short bursts of pred at certain times in her life, but it shouldn't be a longterm thing. there are lots of terrific new drugs in the pipeline that can give her a wonderful, active, productive, quality life. they reduce the complication rates and can help avoid surgeries, etc.
my Mom was devestated when I got dx'd (after 20 years of being told it was 'stress' or my favorite "working women's syndrome"). and as a daughter, I'm glad to hear you are going for counselling because I think it is really important that you get the help and support you need. seeing my Mom so upset and hearing the sadness in her voice upset me. one of the early stages of diagnosis is guilt (what have I done to deserve this?) and seeing my Mom upset just added to my guilt feelings because I felt responsible for her sadness. I'm not saying to sugar coat things with her, but just be aware of how you are projecting your feelings.
take care and I wish you both the best.
I know it's hard not to worry. I'm glad you are getting help. counselling and anti-depressants really do help. depression often accompanies crohn's, so maybe your daughter would be helped by some counselling too at some point. I found a psychologist (phD) in my area that treats a lot of CDers and he's helped me a lot (well, the drugs do too :) ). we have a high incidence of IBD in my area.
I started having symptoms about the same time your daugher did, 10-11 (it's the puberty thing). about 2 yrs later my mom took me to a specialist who said that I had a spastic colon and was swallowing too much air when I ate. no treatment, no testing, nothing. docs poo-poo'd me for 20 years until the disease was totally and completely out of control. I'm one of the 'horror stories' you are probably thinking of (abscesses, fistulas, lots of surgery, permanent ileostomy, etc). but my belief that early intervention with meds is important has been strengthened by all the other people that I have met that were dxd and treated promptly and haven't encountered any of the problems I have.
it's not a fun disease. and bowel issues are rarely a topic of normal conversation :) it's a big deal and it's going to take some time for you and your daughter to come to terms with things. you're a mother and a nurse, a caring and unbeatable combination.
I cannot stress how important a good GI (peds GI even better!) is going to be to her course. Become a memeber in the Crohn's and Colitis foundation ASAP.
In this disease, through the alternative medicine out the window. It may be an "adjunct" to traditional therapy but have seen kids get even close to deathly ill because a well-meaning mom or dad pulled them from their stable maintance dose of Pentasa (I dont want Jane to be "medicated" when she is feeling fine!) and put them on the newest "colon clense" from GNC.
Be educated, be your own (an your daughter's advocate) and keep on top of this. There is a very good chance with good care she will lead a normal active life!
Erin
***@****
Erin
GI.PA
I am a 25 year old woman with Crohn's-colitis. Having had severe disease and most of my colon removed, I am now in remission. The disease can be challenging and painful, but it is surmountable.
I'm currently healthy and completely pain-free. I take no medications. The disease does come and go, but your duaghter won't always be in pain. There is a way round everything, and it's unfortunately something she'll have to learn to live with. As with any challenge in life, you get on with it. From a personal point of view, I get frustrated if my family baby me and pity me. I would advise you support her, of course, but this is something she needs to adjust to without a huge fuss. In my work on the net, I come across loads- and I mean loads- of teens with IBD who live a full, active and happy life despite having Crohn's or colitis.
Half the battle is in the mind- let the doctors deal with the