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Need opinions - 5 year old with severe Crohn's

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Crohn's Disease
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Posted 12/7/2011 5:54 PM (GMT 0)
Hello,

I'm looking for some opinions from people who have been there done that...
My daughter is 5 years old and has been in a flare since August. She had a total collectomy 2 years ago due to UC (at the time they thought it was UC, but changed the dx after the pathology report came back).
She started to show signs again in August and developed a fistula.. meds weren't working to help heal the fistula so we decided to remove the last 5/6 inches of her ileum which removed the fistula and the diseased part of her intestines.

Ok, that was in September...she was put on a high dose of steriods and started on Azathrioprine. When they started to taper her off of the steriods her crohn's started to act up again. We put my daughter on a very strict Gluten free and Dairy free diet for the past 2 1/2 months. Nothing seems to be working. We are waiting for blood work to come back to let us know exactly how her body is breaking down the Aza.

We went for a 2nd opinion yesterday and that GI seems to think the diet is useless and advised us to put her back on dairy and gluten b/c she is so young and needs the calories. She did lose 2lbs in a week since her symptoms started to get worse.
I'm not sure what to do..I don't think the diet is helping since she is getting worse every day.
What would some of you guys do?
Our next move medication wise is Remicade..but I'm not looking forward to that. She already tried it two years ago before her collectomy and it didn't work at all.

I was just wondering if there was something we missed or could be doing..I am open to all opinions so please feel free to share.

thank you in advance,
Posted 12/7/2011 6:03 PM (GMT 0)
Have you guys done TPN at all? I'm so sorry you're going through this, it must be awful. Poor baby!

It's possible that dietary changes would help but aren't enough to induce remission. It's hard to say and it's taken me 10 years to figure out my own dietary restrictions. You don't have 10 years. TPN is often used in pediatric IBD because it is as effective in inducing remission as steroids. Hopefully you can get to remission again and then start looking at dietary options like SCD (which is more restrictive than gluten-free but does allow dairy).
Posted 12/7/2011 6:28 PM (GMT 0)
KM, I'm so sorry she is still so unwell. Poor little dear.

I second the TPN suggestion. Also, you might want to inquire about Cipro/Flagyl with or without pred or budensonide. This treatment sometimes knocks a flare back too.

Is she on a kids' probiotic? Udo's makes a good one for kids.

If you think her symptoms are getting worse back on dairy and gluten (I know they don't sit well with me all the time), put her back on the diet temporarily, or until she gets better. Give her lots of rice pastas, crackers, etc. Carbs are carbs, add butter, peanut butter, and other high calorie stuff. I'm okay with old old cheese in small amounts. I add butter and parmesan to my rice pasta. My kids love the seashell or macaroni kind. Just supplement the calcium.

You could look at SCD. We've had a few moms here who've done it with varying success. It's worth looking into.

Oh, I hope she gets better soon.
Posted 12/7/2011 7:35 PM (GMT 0)
Thank you for suggestions, as for TPN she has not been on it this time around but was on it two years ago before her collectomy. Of course back then it didn't work either, and ultimately she had to have the operation. Her GI did say at her last visit if things continued to get worse and steroids weren't working he would most likely suggest doing TPN since it does bring on remission in some patients. At the time I didn't want to think about that option but of course as things get worse I will do anything to avoid another operation.
As for the scd diet..I think for a 5 year old that diet is way to strict. Especially a sick 5 year old. There is no way my daughter will eat much if I restricted her diet to scd. She's fighting with me now and it's so hard to get her to eat anything.
I might introduce small amounts of gluten little by little. I think I will hold off on dairy though since she was always lactose intolerant, even as a baby so I do believe that dairy will make her stomach pains worse.

thank you again for answering. sometimes I feel like I'm not doing enough for her, but there really isn't anything I can do right now. it's so frustrating.
Posted 12/7/2011 8:06 PM (GMT 0)
You can be lactose intolerant and still include dairy, just FYI. Yogurt and hard cheese has little to no lactose. Lactose-free milk is available everywhere. This is how my daughter and I get our dairy. I know you are frustrated - you've been dealt an awful hand. {{{{HUGS}}}}
Posted 12/7/2011 9:04 PM (GMT 0)
I hear ya, about getting a kid to eat with so many restrictions. It's hard enough getting them to eat. You might want to think about the SCD yogurt, though. It has no lactose, is fairly easy to digest, and has one of the highest levels of probiotics you can get. Maybe ask your GI what he thinks?

Still hoping she'll get better asap.
Posted 12/7/2011 9:47 PM (GMT 0)
I am so sorry for what you and your child are going through.

Have you tried going on the website DragonPack.com  this is a  website for parents with children

with ibd. Maybe they will also be able to give you info.

Take Care

Carmen

Posted 12/8/2011 2:00 AM (GMT 0)
I've never heard of someone so young having such a severe case. She's gone through so much already. Biologics are the heavyweights in terms of medications.

It sounds like you will have to resort to Remicade or Humira at some point. The azathioprine that she is on may work, but it can take up to 6 months to reach effectiveness. She would likely have to remain on a Prednisone wean until it reaches that.

It sounds like they are awaiting the metabolite test result to see what the most effective dose will be for her.

I hope and pray that she gets back to good health soon.

Tom.

Posted 12/8/2011 11:59 PM (GMT 0)
We just received good news..(well good to us) the level's of aza. in her bloodstream were very low. That was music to our ears since I would rater stick with aza. instead of trying the biologics right now. I am still up in the air on the whole diet thing but I'm just so happy that we don't have to give up on the aza right now.

to 73monte...you don't know how many times I've heard that..from everyone including doctors. Nobody can believe how severe her disease is. It's crazy, this disease attacks and just doesn't give her a break. It goes from bad to worse in a matter of 2/3 months.
I know she will have a very hard and difficult life ahead of her, I just pray that one day they will have a cure for her and for everyone that suffers from this disease.

thank you all for responding.
Posted 12/9/2011 12:04 AM (GMT 0)
fyi..she was on flagyl before her resection but she couldn't tolerate it well. It caused vomiting and seemed to make her symptoms much worse. Her doc. isn't sure it's worth the risk right now to try it. So for now she's going to stay on the pred. for the next few weeks until the new dosage of aza. kicks in.
Posted 12/9/2011 1:43 AM (GMT 0)
km1,

Just want to stress how important it is to get the right dosage with azathioprine. You should push for the GI to do another metabolite test after her dosage is adjusted. Has her colon been removed? If so, is there a j-pouch? 

I'm not sure what the research shows about being diagnosed so young. I may be wrong, but I think she may have a chance of the disease changing course, whereas not the case for adults. 

I'll keep sending prayers your way. Good luck with everything.  

Posted 12/9/2011 2:57 PM (GMT 0)
73monte- Yes her colon was removed but she doesn't have a jpouch, and to be honest I doubt she will ever have a chance for one since her crohn's is so severe. I wouldn't want to take that risk.
Her GI is going to retest her in 4 weeks to see if the dosing is right this time. I am hoping it will be.
thank you for thoughts and prayers.
Posted 12/10/2011 11:26 AM (GMT 0)
You are in my thoughts, it is heartbreaking to look at your children suffering from crohn's as there is no logic to it's progression and it certainly has a destructive mind of it's own. I think as a mother you are doing a fantastic job, remember to take care of yourself also and stay strong. I really hope your little angel gets some relief very soon
X
Posted 12/10/2011 11:27 AM (GMT 0)
You are in my thoughts, it is heartbreaking to look at your children suffering from crohn's as there is no logic to it's progression and it certainly has a destructive mind of it's own. I think as a mother you are doing a fantastic job, remember to take care of yourself also and stay strong. I really hope your little angel gets some relief very soon
X
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