2 year old with diagnosis of Ulcerative Colitis or Crohn's...needing advice please

Hello, I ran across your forum while researching and thought I would give this a shot. I'm open to any advice ya'll can offer.  My cute little almost 3 year old son has had a really rough time. He has had diarrhea since January of 2013. Our first month seeing a pedi GI March 2013 we were told that he most likely had chronic diarrhea due to the over use of sippy cups. We were told to throw away the sippy cups and restrict his fluid intake for a month and follow up. We also had a pedi dietician come on board at this point as well. I immediately threw away the sippy cups and began to measure out his fluids. I did a daily log of his diet and reported it back. During this time we also completed 6 different stool cultures and complete blood panel. Keep in mind that we aren't big on fast food as it is so he was already eating a pretty bland, healthy diet to begin with. From March to June we had a few follow up appts where we were told that we weren't restricting his fluids enough even though we were! The poor baby was looking to be on the verge of dehydration at one point I felt. By the end of June my son had dropped 5lbs since his initial visit and the Dr. FINALLY decided it was time for both a colonoscopy and a endoscopy. Colonoscopy showed friability is several isolated areas. We were told that he is very young for such a diagnosis but that they are thinking UC or Crohn's at this point but that it would probably be years before we have an answer. At this point we started Sulfasalazine compound TID. He was on Sulfasalazine from July -October. In October after months of no improvement we added Prednisone and tapered off the Sulfasalazine. At this point we did another large round of stool samples testing for all parasites, c-diff and food allergies.  He was on Prednisone from the beginning of October through December 29th. During this time we did see days where he had fewer dirty diapers and even an occasional "normal" one...but overall I felt it was pointless. During his round of Prednisone he experienced all the typical side effects...moon face, extreme mood swings and weight gain. Let me back track a bit here...the first week of December we met with his pedi GI to discuss what's next. He was ready to wean him off the meds...even though nothing had changed...and began asking again if we were possibly giving him too many fluids...which we aren't. He said to continue to wean off the Prednisone and then he would see him in 3 months. He said that he wasn't sure what is causing Bren's discomfort or frequent diarrhea at this point but that he knows for sure that it's not a food allergy or a parasite. He said that he wanted to take him off all meds and see what happens. And then he said something that baffled both my husband and I, he actually said, " Maybe after our next visit we will be able to bid ado". I wanted to scream! Hello!...nothing has been fixed...he still has diarrhea, he still has stomach cramps. My pediatrician was angry at the fact that Bren was taken off all meds but she said that she would wait to take action till after his March appt. After lots of on going research we decided to try to pull dairy since it is so harsh on your intestines as well as add in daily coconut which has been known for it's healing ways. He has been off dairy completely for 3 weeks and although he still has diarrhea I do see a change, less watery. No improvement noted from the change to coconut milk though...but he has fallen in love with it luckily.

Well here we are in the last week of February and Bren started telling me "me tummy hurt" frequently and his diarrhea is of course in full blown mode.  I called the pedi GI office and we are going in on Wednesday. I'm sure your wondering why on earth we haven't gone for a second opinion yet? And I have an "awesome" reason!...I work for the biggest hospital chain in Texas...and they for some dumb reason have decided to create their own health insurance which limits you to their physicians. Now don't get me wrong...this is a GREAT hospital with a lot of great physicians but this one is just not the right fit for my son. And the particular physician we are seeing is actually head of the GI clinic and won't let you see another colleague unless sitting down with him first.. :( If he doesn't make some BIG changes at this next visit we will be seeking a second opinion at Texas Children's and paying out of pocket...yep our insurance doesn't offer out of network.

With all this being said.. I want to start another drug...I have been researching like crazy and several of them aren't even considered for children under 5. I did run across a study on mesalamine enemas though and thought this could possibly be something to try? I'm lost...and terrified...and I wish it was ME instead of him! Any advice would be greatly appreciated. I'm sorry this was so long and also that I am so sarcastic...just frustrated and trying to give the whole story in the hopes that someone can relate and give advice. Thanks, Leslie

I'm so sorry to hear this. It always breaks my heart when I hear about little ones having to deal with this.

First, you may want to also post on DragonPack: http://www.dragonpack.com/ibdsupport/parents/. It's a support site for parents with children who have IBD.

If you can afford it, I would suggest going to Texas Children's. They're one of the top pediatric GI hospitals (http://health.usnews.com/best-hospitals/pediatric-rankings/gastroenterology-and-gi-surgery), and you're clearly not having any luck with your current GI. A lot of times large pediatric hospitals will have financial aid programs for the un- or under-insured.

5ASAs (like mesalamines and sulfasalazines) are the basic medications for UC. According to usual practices, your GI should have added prednisone on top of the sulfa (NOT tapering or going off of sulfa). A mesalamine enema or suppository (as well as an oral one) would be a great start--do you think your GI or pediatrician will prescribe it?

Is he having bleeding? Do you have any of his test results?

Oh..bleeding..yes he randomly bleeds..when he does it's small amounts of frank blood so I'm wondering if he may have a fistula?

Oh God, im so sorry. I don't know what to say except that i really hope and pray your son gets better soon. What stools tests have you done for him? (Name of the test/company)

Has he ever had a tick bite? Test for lymes?

Try adding potato starch? I don't know though that it'll work when he is so inflamed.

The problem with the SCD is that he may lose more weight initially as he cuts out all carbs.

this sucks !

so very sorry :-(

Yes eosinophillic colitis is a strong possible at this age.
Make sure he is completely off all dairy and hidden dairy,even butter.

OM

So sorry to hear about a child so young going through this. If it was a case of Crohn's, I have read that a liquid diet can be very effective under medical supervision for young children, I don't know about the contents of the liquid but have read that it is either "elemental or polymeric"

Here's a recent paper about it
http://www.hindawi.com/journals/grp/2013/482108/

That really sucks.

So, all your still tests have been through your insurance sponsored labs?

I'd get a stool test from an independent lab that actually looks for more then c.diff.

What did the allergy testing come back with?

I'm glad you eliminated dairy. It will take 6 weeks of full elimination for an immune response to calm down. That means not even the tiniest as a miniscule ingredient. Please cut wheat too. I know that is hard, but.. These two foods are very very inflammatory. You hear lots of contradicting info on diet on this forums. But it does help. May not cure, but it sure does help.

What I see in lots of pediatric patients is that the parents feel so bad about the limitations in diet they often make up for it with treats.. They think they are healthy.. like apple juice, or maybe fruit smoothies even..Or they feel so bad that their child hurts they want to give him some ice cream cause it makes him/ her happy or.. Just a "little piece of pizza" so they can participate in a social gathering.
It so hard to have a child going through so much plus they are generally such picky eaters. We do our best but really consider cutting wheat and dairy completely and try not to replace with sugar or carbs. This is so much easier said then done, I know that.

Did your son have any issues before UC? Was he a colicky baby? Ear infections? Constipation? Skin rashes? Cradle cap? Antibiotics?

I'm so sorry you are going through this.

@BrenBearsMom. My daughter is 8 yrs old and probably my case is similar to yours. She is now recovering from a flare. I had contacted over phone an ayurveda doctor who had also suggested coconut milk. But every coconut milk sold in stores have Caragennan which should be avoided by people with IBD. We are trying to make coconut milk at home but so far with little success. I give her pure coconut water from fresh green coconut which is sometimes available in store near my house.

We are currently trying goat SCD home made yogurt and have stopped all processed and outside food. It is too early for me to say if my daughter has made progress because she is currently tapering her sterioid (her symptoms have stopped). I can claim remission only when I stop steroids and wait at least 3-4 months with no symptoms.Will update everyone after sometime. We have stopped all gluten/wheat/milk and are strictly cooking food at home. We are currently following SCD diet with exception of Paraboiled white rice (it is called Ponni boiled white rice) with starch removed,split soaked mung beans with starch removed and soaked urad dhal to make indian idlis and dosa's.
These two items are very heavily recommended as per ayurveda even for very small kids like yours for both UC and Crohns.

You may want to learn to make South Indian Idlis for your son as Idli is fermented and is a super good food for people with digestion problems.

My daughter is currently taking Pentasa 1.5 grams per day and some times Rowasa rectal mesalamine enema.We are also giving her Ayurveda medicines daily which was sent to us by my mother in law by post as we live in US and inlaws live in India.

Post Edited (kamakya) : 2/25/2014 2:58:03 PM (GMT-7)

Such amazing advice from everyone! Thank you thank you! I going to sit down this evening and research all the things y'all advised of. Will let you know what happens at the dr tomorrow. I will be walking it there with a list of things I want to discuss and try.

Think I should make a separate appointment with an allergy specialist?

Kamakya, did your daughter initially present with these symptoms? And have you seen improvement following the diet you have her on?