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

 

[Aussie]

Hi Felicia, in regards to diagnosing UC, a colonoscopy is sufficient (blood tests aren't really helpful - can be useful in differentiating between Crohns colitis and ulcerative colitis however). Your GI should have a really good idea if UC is present or not during the procedure, the biopsies might help in looking for very mild or quiescent disease.

Good luck.

 

[FeliciaS]

ok, as I expected. thank you.

 

[Farmwife]

Hi and welcome,
So sorry to hear about your baby.
My baby is 3 1/2 yrs. old.
Your right about these kids being to young to battle such disease.
I would gladly take my baby's pain if I could. Emotionally I bare a lot more worry and fear than she does, as it should be.
As far as the blood test, I know not.
You'll learn from here that every child is so different.
My Grace's story is at the link at the bottom of my Sig.
I do have to update it. Sadly things are change almost everyday.
Hang in there your not alone.
I hope the docs get to what's causing her pains.

 

[Tesscorm]

Felicia,

I'm so sorry that your cute little girl is having such problems! It is so hard as parents to not be able to take away their illnesses!

I know that blood tests are not as reliable as colonoscopies or biopsies to diagnose Crohns or UC. My son was 'tentatively' diagnosed based on ultrasound, symptoms, etc. but his diagnosis was only confirmed after his colonoscopy.

I'm sure other parents will be along with more info. In the meantime, feel free to ask any questions and know you are not alone here as it does help to talk with others who understand! :ghug:

 

[Sascot]

Hi and welcome. Sorry to hear about your little girls diagnosis. I am not sure about blood tests - I know they are not as realiable as colonoscopy. At least they have done one and you will know for sure next week. Hope she starts to improve quickly once they are treating her!

 

[FeliciaS]

Thanks to all of you for the support. I'm happy I joined this support forum.

 

[kimmidwife]

Hi Felicia
Welcome. I am sorry you had to find us but glad you did. Did the doctor sayiftheywereableto see anything on the colonoscopy or did they just say wait for the biopsy? I know sometimes they can see it and sometimes not. I know how hard this time is. If you need anything that we all can help with please let us know.

 

[TangieC]

Felicia,
So sorry to hear about your little one. She is a cutie! My little boy, who turned 4 in May, was diagnosed with Crohn's in July. I felt the same way about his being too young for this. I wish it were me! My B's GI did as many test as he could without being invasive, but he finally said after a few days that he just had to see what was going on. So he did the endoscopy and colonoscopy to confirm what he suspected. He told us after that the blood tests, stool tests, etc., were pointing to that, but he wanted to look to be sure, and of course, do the biopsy. I will be praying for you and your family. I know this is hard. Frankly, I've had a really bad week even though my boy is better. I think it's because I haven't really cried over it. So, anyway, this forum will encourage you and inform you! Knowledge is power Please keep us posted! Hugs to you!!!

 

[Dutch941]

Hi Felicia...welcome to the group. We're so glad u found us but sad that another person has joined this unfortunate club. I have suffered through this process also(as everyone here has). Firstly, I can tell you it gets easier for the most part. You will never feel comfortable with your child being sick at any level.....but you will gain more and more experience and knowledge about what is causing her issues...and with that you will find some relief..so hang in there.
As far as diagnosis I'll tell you what I know from experience. My son was 12 at diagnosis . We had About a year of illness with the second half of the year being more obvious that something was wrong. Vomiting....stomach ache....diarrhea.....weight loss....when we learned it was serious we too we t to a pediatric gastro. First was Bloodwork...which showed a variety of malabsorption issues and severe anemia. This lead to a belief that UC or Crohns was the suspect because the other suspect (Celiak) was unlikely due to Bloodwork results. First real test for issue was colonoscopy and endoscopy. Endoscopy was negative for issues. Colonoscopy showed immediate issues in his entire colon. In our case this was clear visible data...but I'm assuming other cases may not be as evident especially since the colonoscopy cannot see much beyond the colon....what you are waiting for is likely the biopsy results...which I believe will help confirm UC vs. Crohns to some extent. In addition you may get a genetic test (Prometheus) which will reveal genetic mutations (or lack thereof ) to support UC vs Crohns.
At this point..that is where you are..or soon will be. So what's the good news? In our case once we discovered the issue..we were treated with prednisone and he immediately felt and looked better. Gained all of his weight back.....re energized.....so stay positive...relief may be right around the corner.
Now, he is not cured because that's not how this disorder works. So stress And worry is my new way of life. When I get upset..or worried ..I try to remember something very Important. Everyone has problems...and medical disorders are part of life sometimes......so I am thankful that even though this disorder is a real pain in the ass it is not as horrible as some of the things other people including children have had to face. For what that's worth it helps me feel a bit more comfortable. Also from what I know now.....when choosing between UC and Crohns.....UC is the one to have. So hang in...keep researching......try to stay calm and help her feel as well as possible...and bring all your questions here. So many different stories here but everyone has a common thread. We love our kids and hate that theyre not well. And the information here is invaluable as a resource to compare aGainst what medics tell us.
Again...welcome And keep us updated ....
Don

 

[DustyKat]

Hi FeliciaS and :welcome:

I am so sorry to hear about your little one, bless her...:hug: and such a true statement that it is so very heartbreaking that ones so young are facing a disease such as IBD.

You have been given wonderful advice and information hun and the only thing I can add is my support in saying that scopes remain the gold standard when it comes to a diagnosis of Crohn's or Ulcerative Colitis.

Good luck Mum, I hope you have solid answers for your little girl very soon and she is able to find lasting peace and relief.

Dusty. xxx

 

[FeliciaS]

OMG! Thanks to everyone for making me feel welcomed. I was so happy to wake up and see all these posts!! I will keep y'all updated!!

@ Kimmidwife. No he didn't say whether or not he seen anything. The only thing he said was "She did really well. She's in recovery. I took a biopsy and you will get the results in next week." and I said okay. I'm mad at myself now because right when he walked out the door a million questions popped in my head.

 

[kimmidwife]

Don't be mad a t yourself. The whole having your child going through a procedure is so overwhelming it makes you forget everything. It may be a good sign that they saw nothing with the naked eye. Maybe it means her disease is more mild.

 

[Dutch941]

Get used to the million questions popping up. I bought a notebook and my wife and I write down any and all concerns and questions....then we ambush the doc when we see him..and don't forget to write down his answers..because you will forget what he says half the time. As of now I have a log of all issues....questions..answers..and test results to refer back to.
I also use a program on iPad called "my medical". It's great and tracks all His medical data

 

[FeliciaS]

@ kimmidwife, I hope its mild, so mild that its barely there.
@Dutch 941. thats a good idea. I have an ipad. Im going to download that app.

Does anybody know how long it takes for a biopsy results to come back? She had it done Friday so of course I'm not expecting today, but hopefully buy Wednesday, Maybe?

 

[DustyKat]

For us it was about 5 days but I would say normally about 7-10 days for a complete report.

Good luck hun...:hug:

Dusty. xxx

 

[Hope for Karina]

Hi Felicia. So sorry about your precious girl going through this. These children are so young to have all these problems! Our daughter was diagnosed at age 3 with UC but had problems since birth with the same symptoms. She is now 10 years old and is on 3 different medications to control the flare ups.
Ipad or writing down information is a great idea for each visit. Also keep it handy for when the doctor calls or if you need to call the doctor. Good luck and hope that you get some good news with the results. Sue.

 

[FeliciaS]

Update: M'Kensie is feeling better. She does have UC, its not bad, so they say. She's taking prednisone and prevacid right now. I'm praying for a complete healing though!!!

 

[DustyKat]

Thanks for the update hun...:hug:

Hoping, praying and wishing here too that your gorgeous girl is soon feeling fab and full of life! Bless her...:heart:

Dusty. xxx

 

[Sascot]

That's good that she has a mild case, hopefully the meds will get her into remission really quickly!

 

[Dutch941]

Great news!

 

[my little penguin]

Yippee!!!
Hope she feels better soon and they get her on a maintence med.

 

[Farmwife]

:mademyday:


:hug:

 

[polly13]

Hi there, I am so sorry to hear about your little girls diagnosis, my 4 year old Lucy has Crohn's and like you were about a year getting a diagnosis and while hearing the words that tell you your baby has IBD is probably the hardest thing you will ever hear, it is still better than not knowing what is wrong. I am pleased to hear that they feel her case is mild and hope that she gets into remission very soon. Thinking of you.