9 yr old daughter

Ok so to start this isn't about me it's my daughter. Any suggestions would be great.
From 2013-2014 she was 8 and had some constipation issues and seen a GI for it. She was on Marilax (sp?) well back in Jan we started slowly takin her off it and was doing good. June comes and one day she felt like she couldn't poo and so I gave her some Marilax, next day same story and also threw up. Took her to doctors and they ran some tests and a poo sample. Two days later we are at Children's ER and after 4 days of tests they do a scope and she had inflammation in her colon.

Doctor diagnosed her with UC, put her on meds and we went two months or so on steroids and her UC MEDS. Her recently she has began throwing up every time she takes the UC meds. I took her to an Allergy specialist and found she is allergic to Corn, Yeast, and soy.(skin test)
allergy doct wants her on no soy, corn or yeast. But that's impossible we tried and that won't work.

Her GI wants to change the UC meds since she is throwing up the other one. Right now she has been off all meds for a week and is perfectly healthy.

My question is does she even have UC? I mean just because her colon was inflamed once should constitute a repetitive disease. I feel mb one of the food items caused the inflammation. What do I do here? I don't want to medicate my kid for no reason.

Few questions, one did they take biopsies? Second, was there any other symptoms besides constipation? Like bleeding? When I was diagnosed I was bleeding like hell. And it shows inflammation in the big intestine, which is colotis, if it was in the small then it's crohns. They also take a stool sample to see if There is a large amount of white cells I believe... It suggests that there's inflammation (almost certain) also blood tests to see if there's inflammation. Did he say where exactly there was inflammation? And if she's throwing up the medicine what else is she on besides prednisone? What's the doses?

Welcome to the forum, mysickkid. Sorry to hear your 9 year old is having trouble with her health.

Look, there has been a ton of research on inflammatory bowel disease. People have been suffering from inflammatory bowel disease for ages. It didn't used to be called "ulcerative colitis." Maybe you've heard of "spastic bowel?" That was a term used maybe 50 years ago.

I am sure that your daughter's doctors did not just willy nilly decide to scope her bowel. This is a very invasive test, and for a young kid I'm sure it was all very scary. It is important for you to understand what the condition of your daughter's bowel was, what the blood tests showed when she was first admitted. Most important to your daughter is that she has a healthy bowel so she can grow and stay healthy.

Why do the DRs think she is vomiting now? What are her medications? It's great that she is feeling well, but if she is off her meds this probably not going to last.

Finally, about the food allergies. I have been told by my allergist that skin testing for food allergies is not very accurate. That was a while ago, so I don't know if things have changed, but one thing you can do is eliminate the three foods you have listed (I know it's hard) and then add them back in, one by one, and observe what happens to your daughter. None of this will make sense, though, if she's got an untreated inflammatory bowel disease.

Sometimes people can have inflamed colons from infection, but if the DRs told you that her situation was Ulcerative Colitis then this is a chronic illness that must be treated continuously.

If she is on meds for UC testing what foods make her sick won't work because she won't get sick because she is on the UC meds lol

She only throws up 20min after taking the UC meds. No matter what she eats or don't eat at all

What meds was she on, and what does her GI want her to change to?

Is she still on steroids?

Personal opinion: wouldn't suggest methotrexate for her... I know it works for some people but when I took it I completely stopped peeing( not trying to scare you) infliximab is a biologic and that is usually used as a last resort medicine. 6mp I can't really give an opinion on, try that perhaps. Caused me nausea when I took it though. And doesn't work right away

Also I forgot to add, if she was on prednisone she should've been on a maintenance medicine like asacol. Not sure why the doctor didn't put her on that. Prednisone only works as an immunosuppressive while asacol works as anti inflammatory.

Doesn't make sense.

mysickkid said...
we went two months or so on steroids and her UC MEDS. Her recently she has began throwing up every time she takes the UC meds.

mysickkid said...
Off steroids
She was on prednisone and that was it.

see my notes above about prednisone causing stomach aches. She needs an antacid like Zantac or a ppi like prevacid.

Plus the prednisone is probably making her emotional issues worse. Best to get her off prednisone but she will need another medication as mentioned above.

Prednisone IS a steroid. So she was on two steroids? This really doesn't make sense

If her meds are cauing nausea and vomiting contact your gastroenterologist and adjust her medications.

Yes your daughter has ulcerative colitic, a chronic, lifelong disease that requires medication for life. A common mistake is people stop their medications when they feel better and symptoms stop. An absence of symptoms means your medications are working so stay the course; do not stop your daughters medications under any circumstance. Symptoms will return if you stop her medications, it is not a matter of if, but rather a matter of when.

Uc is an autoimmune disorder, meaning your daughter's immune system is attacking the lining of her large intestine which causes inflammation, diarrhea, blood, pain and discomfort. Your medications at minimum reduce those symptoms but ideally eliminate them. The immune system never sleeps, it is always attacking the large intestine. Without uc medications, the inflammation starts and gradually spreads in extent and severity without medication. Uc will return with a vengeance, worse than before, if left untreated. With its return uc will be much harder to control, and will require stronger meds.

Azathioprine(imuran)for management and omeprazole (Prilosec )
Wife does the medications all I know is the one thing she is on now makes her throw up everytime she takes it

Post Edited (mysickkid) : 11/24/2014 10:07:13 AM (GMT-7)

So is she still taking the azathioprine and the prilosec?

Has her DR done any bloodwork recently to see if the azathiorprine is causing problems?

From webmd: www.webmd.com/drugs/2/drug-13771/azathioprine-oral/details#side-effects

Side Effects
See also Warning section.

Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects. Many people using this medication do not have serious side effects.

You may experience stomach/intestinal symptoms such as nausea, vomiting, diarrhea, or loss of appetite. If these effects persist or worsen, notify your doctor immediately. These symptoms may be reduced by taking the medication after meals. Talk to your doctor or pharmacist about other dosing advice that may also help with these symptoms.

Although unlikely, more severe stomach/intestinal symptoms (e.g., severe nausea/vomiting/diarrhea, stomach/abdominal pain) may occur as part of a very serious allergic reaction. Seek immediate medical attention if you have severe stomach/intestinal symptoms or other symptoms of a serious allergic reaction which may include: fever, shaking chills, rash, itching/swelling (especially of the face/tongue/throat), severe dizziness, trouble breathing, cough, new or worsening joint/muscle aches, dark urine.