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Toddler with severe colitis...

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Ulcerative Colitis
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Posted 9/14/2009 12:39 AM (GMT 0)
Just have a few questions and looking to see if anyone has experience with a toddler. Literally writing this from the hospital room..

Last tuesday my daughter (3 year old) was having terrible pain and was going to the bathroom hourly. We went into the ER and she has been on cortisteroids for the past 5 days with no improvements. I would actually say that her condition has been getting worse each day. She is pretty much either sleeping or using the toilet. The second colonscopy done on Thursday revealed major inflammation and they have ruled out all other things that may have caused this (C-Diff, CMV, etc...).

The doctor informed us that on Monday we will have to make a choice. They believe the only real options are remicade or surgery. The don't believe that 6mp will do anything to help remission.

I hate having to make this choice for my daughter. The youngest person on remicade for UC here is 4. My daughter will become the youngest. We are in a fairly large children's hospital here in NY and feel fairly comfortable with the doctor.  Any thoughts on this? Are there any parents of young children on remicade that can speak to the side affects and the overall health of your child?

Thank you,

Francine

Posted 9/14/2009 1:02 AM (GMT 0)
Any chance you could speak with the parent of the 4-year old?
Posted 9/14/2009 2:37 AM (GMT 0)
I have asked and they don't think it will be a problem.

Posted 9/14/2009 2:51 AM (GMT 0)
Well that's good and maybe she can even put you in touch with more parents =) Good luck!
Posted 9/14/2009 6:39 AM (GMT 0)
Remicade for a child kind of scares me but I don't know too much about it. I do know studies have shown potential issues but they seem to only occur in a small percentage of people, the % is higher in children. I don't know what I would do if I were in your position. What a difficult situation. I am so sorry youre going through this and I am sorry for your daughter, I can't imagine having this issue since I was a child. It's hard enough on an adult. There is one woman who posts here ocassionally, I think her name is Hailey. Her daughter had "UC" and nothing would fix it. She ended up getting an antibiotic shot (rocheprin?) for something else and it wiped out her UC. I wouldn't rush to make any decisions, get second opinions and educate yourself. I would exhaust all of the options, natural, dietary, antibiotic, antifungal, antibacterial... before making any decision.

https://www.healingwell.com/community/default.aspx?f=38&p=4&m=643365

Other people have tried the medicine she mentions and had no results. It's not a magic cure but I want to show you that sometimes things are not so cut and dry. Surgery can be a good option but I am not sure about surgery on a child. I have seen teenagers that went through it and are very thankful to be rid of the UC.

Posted 9/14/2009 12:55 PM (GMT 0)
Hi katiesmommy1,
I'm sorry to say that I don't know much about this topic, but I did want to let you know that your post was being read and that you and your daughter are in my thoughts and prayers. I hope that you're able to learn more from the other child's parents and that you find the very best solution under the circumstances.
Hang in there.
Posted 9/14/2009 1:37 PM (GMT 0)
You can meet parents of other children who have done the meds and surgery at www.j-pouch.org They will discuss their experiences and the process they went through on making these tough decisions.

Sue
Posted 9/14/2009 3:32 PM (GMT 0)

Katies Mommy,

Your daughter's situation sounds similar to my now 5 year old.  We went to a petting zoo right before she turned 3 and all heck broke loose. We have gone through every stool test, blood test, allergy test, natural treatment, etc. Steroids did nothing. A series of events lead us to take all dairy from her diet a month ago. It's been over 2 years of diarrhea and we had tried no 'milk' but never took yogurt, probiotics cultured in milk, all dairy in baked goods, out of her diet. She is taking a small amount of Flagyl every day, we do believe that is helping a bit but there was a dramatic change to 1-3 stools a day once we took all dairy out. (no longer watery) Have you tried that? I read about the rash Katie had, it may be an allergic. I hope your little girl feels better soon.

Michele

Mommy to Jen, 5

Posted 9/18/2009 8:26 PM (GMT 0)
I am so sorry for both of your kids. I have two little one and I have UC and my mom has Chron's. Is this disease hereditary? My mom got it at 35 and I was 38.
They say a lot of the new generation is getting some form of IBD.
Why?
Is our air quality that bad, or is it our food?
Posted 9/18/2009 8:59 PM (GMT 0)
there was recently somethign on tv, about how we are "too clean" here.
We are so paranoid with kiling germs and keepign our water sparkling clean and our hands germ-xd that we have killed off all the bacteria we need to stay healthy.
3rd world countries have much lower instances of IBD and its thought that its because, believe or not, that they get worms. And those worms in their intestines help them have stronger immune systems and basically keep them runnign right.
part of the book was telling how a good mommy lets their kid eat dirt and food off the floor, because that helps them develop those immunites (that makes me a GREAT mommy, lol).
Also of course we use so many antibiotics that we are either immune to them, or they kill off stuff we do need.

Another study was looking at the instance of food allerigies in children. And it showed that children in middle class to upper class families, usually white children, had more. And they were saying that the reason for this is, drs are telling parents to introduce one food at atime, and not to do certian foods until a certain age because of alleriges. And this is actually working AGAINST the kids. The reason poorer families werent showing it was becuase they either werent going to a dr and getting that info or they couldnt afford the baby food and were just feedign off their table. And the same wtih some other ethnic groups, just the way they do things in those groups they feed their children different foods faster. And as a result the kids dont "have time" to become allergic.

I know thats kind of hard to understand, but it made sense to me,lol.

As for the surgery thing, having had surgery 2 years ago, if my son gets UC, he will have his colon out, my husband agrees, and he is a nurse. In fact a few years ago, shortly after i had surgery my son started having blood and mucus in his stool and so we took him to the dr, and they checked it out and it showed no signs of infection or anything, and then it quit. then it happened again. and it wasnt long until we realized it was only when he had alot of sinus drainage and drank alot of milk at the same time. But before we realized that, i told my husband flat out, its coming out. And he understood. But anyway, after we realized that, we just didnt give him milk when he had sinus drainage and it cleared up. So we didnt have to go that route with him. Luckily!
Posted 9/19/2009 12:31 AM (GMT 0)
     I just cannot imagine the agony your family and especially your little girl are going through.  I will keep you all in my prayers.

     Several years ago we had friends who had a son who was about ten years old at the time.  He had a close friend who had his colon removed because of UC.  I know this is several years older than your daughter but I wanted to let you know that the surgery was successful and the boy was living a quality life.  Before the surgery he was very sick.  We have lost contact with these people, unfortunately.

     If surgery is in your little girl's future, I would try to find the BEST hospital and surgeon to do it.  I heard that the Cleveland Clinic is excellent.  I was thinking of going there myself last year when my condition had worsened and it took me seven months to get over the flare.

     God bless.

Posted 10/3/2009 1:07 AM (GMT 0)
Me and my son were just released from the hospital after 5 days.  He has been in severe pain with steady diarrhea for a month.  After many Doctor apt we actually took him to the ER, he was extremely dehydrated.  The Doctor diagnosed him with IBD and started him on steroids and Apriso.  I am at a loss and very scared.  I would love some insight from others.
Posted 10/3/2009 2:45 AM (GMT 0)
Please read "Breaking the Vicious Cycle" by Elaine Gottschall.  her child went through what yours is going through now.  Dr. Ronald Hoffman, a doctor in your area may be able to help as well! 

Love and prayers...


Posted 10/3/2009 3:18 PM (GMT 0)
I might wait til she's older to consider surgery, and try meds first, if only because small children like that might not realize they could tear stitches, etc. However, surgery is definitely a valid choice, as once the second step is complete she'll be living a pretty normal life.
Posted 10/4/2009 6:01 PM (GMT 0)
My daughter's Gi has been pushing Remicade from the start. It also scares me being their little bodies are so small and this is such a heavy drug. I am saving this as a last resort before surgery. As of now she has not responded to Lialda or steroids. Good luck to you.
Posted 10/4/2009 9:29 PM (GMT 0)

If me - I would get as many opinions as possible and be sure before surgery.  Just possibly the best thing but be sure!!

ElaineNY

Posted 10/5/2009 12:01 PM (GMT 0)
Hi Katie's Mommy,

I just wanted to tell you how sorry I am to hear about your daughter's illness.  I have severe pancolitis, and I'm terrified about my son getting it one day.  Your story just breaks my heart.  I wanted to second the recommendation to look into the book "Breaking the Vicious Cycle."  I tried it, and although it didn't work for me, there are many success stories. 

What did work for me was the spinach and sunflower diet that has been discussed at length on this website.  You can do a search for it on this website to learn more, or I would happy to email you privately to tell you about it. 

I tried this diet as a last-ditch effort before moving onto Remicade, and it saved me.  Please let me know if I can help and good luck with these big decisions.  I'm praying for you and Katie. 

Katie

Posted 10/5/2009 3:52 PM (GMT 0)
katiesmommy - what dr are you using in NY? look up dr joseph Levy at NYU -- great ped GI
Posted 10/5/2009 6:20 PM (GMT 0)
You have gotten a lot of advice here, and I don't have anything to add on that front, but my prayers are with you and your daughter. I can't imagine having to watch your child go through this, and having to make these choices for her.

Please keep us posted.
Posted 3/6/2011 2:50 AM (GMT 0)
As my first post, can I resurrect this thread? Updates perhaps? I will also read more and see what I can learn about active members....

We recently went through something sort of similar with Isaac, our two year old, who by now is doing mostly okay....

details: http://ibdinourhome.blogspot.com
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