4 year old tested positive for ulcerative colitis

[FeliciaS]

Hi, I'm new to this forum but i have a few questions that really need answers. My daughter is 4 years old and about a year ago she started having abdominal pains and she would run a fever only in her mid section though and she would be constipated sometimes and diarrhea with blood other times. I switched her pediatrician because i felt her pediatrician was not listening to me. Now she has a new doctor and he referred me to a pedi gastroenterologist. So on September 12, 2012 they did some kind of blood test and the lady said in her exact words "We tested her for Crohn's disease and Ulcerative colitis. The Crohn's was negative but the Ulcerative Colitis test was postive. It immediately turned the tube a different color." she also said that my baby pancreas enzymes were elevated. So yesterday October 12, 2012 (Friday) her gastroenterologist did a colonoscopy on her with a biopsy, but we wont get the results back until next week. I was told that the blood test for UC is not accurate and her diagnosis could be wrong. So My question is, Is the blood test for UC accurate and will the biopsy confirms if she has UC or will it tell whats wrong? My baby has been suffering for a year and she's so young, to young for this. This situation has really drained me to the core. Please answer if you have any idea or knowledge of what I'm saying.
Thanks,
Concerned Mommy

 

[Angrybird]

Hello and welcome to the forum, I am sorry to hear your little one is poorly

I must admit I personally have not heard of a blood test being about to definitively confirm whether someone has crohn's or UC, the recent scope she has just had should be able to help confirm either way. When will you be seeing the doc to get the results? We do also have a parents forum that is definetly worth checking out do you can have a chat with the mums and dads here as well: http://www.crohnsforum.com/forumdisplay.php?f=49.

Please keep us updated on how things go.

AB
xx

 

[David]

Hi Felicia and welcome to the community

By chance did they say the blood test was the Prometheus IBD sgi Diagnostic? It's one of the more widely used tests that can help differentiate between the two. However, it really shouldn't be used as a diagnosis tool as yes, it can be wrong sometimes. That they've done a colonoscopy is a good sign. Hopefully the news is good there.

If you haven't already, be sure to connect with other parents like Angrybird suggested as they're a wonderful group.

All my best to you and your entire family.

 

[sickinlk]

hi felicia,
i have uc so if you have any questions ill be happy to answer. so sorry for the wee pet. god love her.
did they talk to you after the scope. normally they can tell there and then unless the disease is inactive.
they said her pancreas enzymes are elevated too. i wonder has she got pancreatits aswel. funny i have that too. the pain was always in the upper mid section. it hurt.
a nurse once told me that kids are the best patients. they just get on with it no matter how sick they are. they dont worry like us or know what can go wrong.
anyway im here if you have any questions.
ju

 

[FeliciaS]

@Angry bird. I really don't know when I will be seeing him again. I was trying to wait until the results to get in to see if he would give me an appointment and I did join the parents forum.
@David, no they didn't tell me what test they used and I probably should have asked more questions, but I will ask them for sure our next visit! I have a list of questions.
@sicinlk, my daughter is the sweetest shes in pre-K and her teachers would say "well she said her tummy hurts and that's it, I really never heard complain." Even though she don't feel well she's always happy and pleasant to be around....When I ask her where her tummy hurts at she always point to the middle of her stomach. I hope they plan to do something about that soon!!!!

 

[sickinlk]

its always good to keep a wee note book to put questions in as we think of them. i do that and im collecting alot for a specialist im gonna see about my pancreas.
ive a daughter who will be 4 next month and shes in playschool. she be starting regular school next sep. she had a virus that landed her in hospital last year and i was so scared i'd loose her. nothing worse than when they're sick. you'd do anything to take it away.

ju

 

[naturalhealing]

I truly understand

Hi, I'm new to this forum but i have a few questions that really need answers. My daughter is 4 years old and about a year ago she started having abdominal pains and she would run a fever only in her mid section though and she would be constipated sometimes and diarrhea with blood other times. I switched her pediatrician because i felt her pediatrician was not listening to me. Now she has a new doctor and he referred me to a pedi gastroenterologist. So on September 12, 2012 they did some kind of blood test and the lady said in her exact words "We tested her for Crohn's disease and Ulcerative colitis. The Crohn's was negative but the Ulcerative Colitis test was postive. It immediately turned the tube a different color." she also said that my baby pancreas enzymes were elevated. So yesterday October 12, 2012 (Friday) her gastroenterologist did a colonoscopy on her with a biopsy, but we wont get the results back until next week. I was told that the blood test for UC is not accurate and her diagnosis could be wrong. So My question is, Is the blood test for UC accurate and will the biopsy confirms if she has UC or will it tell whats wrong? My baby has been suffering for a year and she's so young, to young for this. This situation has really drained me to the core. Please answer if you have any idea or knowledge of what I'm saying.
Thanks,
Concerned Mommy

I want to start out by saying that, my apologies that your baby has to go through any type of unexplainable pain. I responded because my son was 6 when he was "diagnosed" with Crohns, so I understand what you mean by feeling drained to the core.

It feels as if doctors are testing your baby and searching but not really relating to your need to find out NOW what is going on. As you wait, your baby isn't getting better. As you wait, you are still with no answers. I understand 100%.

So with that being said let me say a few things:heart:. I'm not really sure about the UC and Crohns test because there isn't a test that can tell you if you have either or. This information is extremely new to me.

Now, they can take blood test to find out if she has a high "Sade" rate ( hope I spelled that right). This will tell doctors if she has any type of inflammation in her little body.

The only real way they will be able to tell if she is suffering from any type of Crohns disease or Uc, is if they do a biopsy to see whats really happening in your intestines.

Most times when they do a biopsy they can give you a little information to go off of. These are the things that upset me about the doctors we were dealing with. It just feels like they work on their own time sometimes.

So the question is, what do you do while you wait?

The main thing you are wanting to do is make your baby comfortable. This was what I NEEDED to do with my son and I am still working at it to this day. But the only way to really find out how to do this is to evaluate exactly what she is feeling and her daily symptoms. So lets evaluate your daughters everyday to find a happy medium until you get the answers you need.......

Things to evaluate

Can you explain what she does from the time she wakes up until the time she goes to sleep? That includes the food you feed her, the juices she drinks. Anything that she intakes into her body is important information.

Then lets evaluate her bathroom trips. How often is she constipated, how often does she has diarrhea?Does she have fevers? is she throwing up and how is her appetite?

 

[FeliciaS]

oh thank you so much. I'm dealing with so much. I can burst in tears now. im in school suppose to be graduatiing in December. I have to class miss sometimes because my baby isn't feeling well at time. Some days are better than others. I do need to pay more attention to her bathroom trips and what she's "producing" and her eating habits she barely eats tho, just a little of everything. my five year old gets mad because she has to eat a balanced meal while my baby (the sick one) eats fruits and popsicles really anything she wants (except sweets) just to get her to eat. The test might have picked up inflamation, I don't know how she got UC out of that, it could have been her pancreas inflamed though. Who knows. I'm trying to remain optimistic and wait patiently for the results but its so hard!!!

 

[naturalhealing]

oh thank you so much. I'm dealing with so much. I can burst in tears now. im in school suppose to be graduatiing in December. I have to class miss sometimes because my baby isn't feeling well at time. Some days are better than others. I do need to pay more attention to her bathroom trips and what she's "producing" and her eating habits she barely eats tho, just a little of everything. my five year old gets mad because she has to eat a balanced meal while my baby (the sick one) eats fruits and popsicles really anything she wants (except sweets) just to get her to eat. The test might have picked up inflamation, I don't know how she got UC out of that, it could have been her pancreas inflamed though. Who knows. I'm trying to remain optimistic and wait patiently for the results but its so hard!!!

:tear: Oh yes babe, the tears will come and they will go. But they will definitely get better I promise you that.

Well lets make that your first step starting today.Pay attention to her next 2 poopsoo:. Note down the color, consistency and see if it contains any blood. Also note down how many times she goes in the next 24 hours. (if possible)

Another thing I want to pin point is that little mama should definitely be eating a well balanced meal like your five year old. But right now, you shouldn't focus on giving her what your 5 year old eats because she already sounds uncomfortable.

Popsicle are no good!!! believe me when I tell you that when your baby is in the middle of a flare up or tummy pain (figuring that it's UC or Crohns.) SUGAR IS THE ENEMY! You are going to have to cut the Popsicle out.

Fruits are great! but we need to find out how she responds to fruits. During a flare up sometimes raw fruits can irritate the gut. We need to find out how she responds to her fruit. But for the time being you are going to have to work on calming her intestines down.

Think about everything we talked about and if you have anything you need to add you can PM

In a little while

(I'm going to make this a topic on my blog tonight.)