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Please if anyone has been through what I am going through HELP! My two yr old who was dx at 16thmths w/Crohn's and UC. He has been on Predinsone since Nov and started on Flagyl since March. That seem to have been the Miralce drug. Well it's going on 2wks and eating has become a thing of the past for him. All he want to do his drink,eat ice, and popsicles. He can not have Dairy due to Allergy. Any ideas please help!! I am at my wits end! I don't want him to have a feeding tube, I just want him to eat! I really just want a cure for the horrible nightmare!

 Reply posted for saddenmom14.

Was he eating before you started the Flagyl? If so then the medication could have caused it. Since he's still taking liquids, it's all right for now. Consult the pediatric GI and I would recommend that you have your son take some Pedialyte or other supplementary aide so he's still getting some nutrition.

Tell your son that even grown ups have to drink that stuff sometime! It's not uncommon for GIs to recommend that to their adult patients as well.

Ask about some pain control meds if you haven't already-some antispasm drugs like Levsin or Bentyl help to relax the intestines a bit more and he might be more comfortable then to eat semisolids.

Good luck and sending hugs!

 Reply posted for saddenmom14.

Sorry to hear he is struggling.  What tough decisions you all have been faced with!  Did you get to talk to your doctor about the elemental diet thing at all?  I wish I could have more words of encouragement.

 Reply posted for AZMOM.

Hi, Things aren't going so well. We went for labs today, and are waiting for the results. One set of doctor's want's to start Immuran. The other want's to wait until the results are back. Whatever the outcome, Immuran is not an option. He's still just a baby. I cannot see giving a 2yr old something that strong. I get that the prevalence of someone his age 4.56 out of 100,000. But you are not going to use my baby as a guinea pig. It takes 3-6mths for Imuran to even start working. In the meantime is other organs are at risk. He could even go into renal failure before it has time to work on the Crohn's. Then he has to be tested once a week or either once every two weeks. Who's to say that the Immuran is even going to work. The 5ASA's didn't. Then to have endured all of the needle sticking for nothing. If anyone has a solution I will be so ever grateful. As, far as his appetite goes since I stopped the Boost Breeze his appetite has slowly started coming back, the downside to that is everything he eats goes right through him. Here comes the diaper rash.......... Great

 Reply posted for saddenmom14.

Hi!  Just wondering how things are going......

 Reply posted for saddenmom14.

I can relate somewhat to your circumstances.  My daughter had been sick throughout infancy and finally diagnosed @4.   I think your past posts all make good points.  Some meds do have an affect (ie metalic taste) and could be a big part of it.  Also, some meds supress appetites too.  

Making things as interesting as possible helped. Instead of plain old french toast, I'd make french toast stix then have different "dips" for her to use. Another day I would change it up and use a cookie cutter and have her decide what will it be, chocolate chips, yogurt to dip on the side (we called it pudding), syrup, all natural jam?? Anything I could think of, we tried. Mickey Mouse waffles. We would do the same with veggies, children that age want to "me do"so, I indulged.  It took a little longer and was a little messier. Today, my daughter is a very good eater and is able to judge for herself what she can and can't tolerate. I would also bake high calorie treats, whether brownies, muffins or cookies. She knew that would follow dinner (let's celebrate). We always have her "safe snacks" on hand.  You would be surprised how quickly a little here and there adds up to calories. 

It is great that he is drinking and wonderful he will take the soup for you.   At least you know he is hydrated and there are lots of different soups...the more calories the better.

Have you spoken to a pedi social worker? It may be worth the visit or even a pedi nutritionist? The SW in our gi's office is great as well as their nutritionist.  

Many 2 y/o are picky eaters...after all, that is why they call it the terrible two's!   I know how frustrating it is, keep strong and keep trying....it will get better.

Lizzies Mom

 Reply posted for AZMOM.

AZ,

I wouldn't dream of jumping you on this!  My trio taught me that all rules go out the door when you are dealing with a 2 yr old.....I am amazed they survived....

Another option would by TPN via picc line. I just wish they would come up with a way to make it easier on the little ones.   

Breezy

 Reply posted for saddenmom14.

Hang in there!  How long has this been going on?  Does your son realize you are concerned?  I had a wonderful pediatrician with my trio.  He taught me so very much (about myself, too).  First, when you react to something, your child will intensify it.  Second, no one says a little one has to eat a certain way.  Third, think outside of the box, the child does.

I spent many a day pureeing cantaloupe, strawberries, bbq (yep) chicken, and other things.  I made fruit pops, fruit sauce, and hid veggies in everything.  I pureed soups and sauces.  I am the queen of mashed potatoes complete!  Puree chicken in broth and add to the mashed potatoes along with a mashed carrot.  We made volcanoes, we made sandcastles, we had a lot of fun with food.  My grown kids still want me to make volcanoes.  The key is to relax, take a deep breath, and think like a little one.  Sometimes it works and sometimes....

The elemental diet is good. 

By the way, a toddler can survive on green beans alone. Seems they can get very determined to eat only one kind of food for a period of time....

Breezy

 Reply posted for AZMOM.

Okay this is a study from the National Institutes of Health about elemental diets.  Looks like the brand most commonly referred to is Vivonex.  

 Reply posted for saddenmom14.

It's a specific type of formula - liquid.  I don't know much about it other than it can be used.  There's a post about it from another child way down the forum.  They are getting it through a tube though.  It is not supposed to taste great.  Let me see if I can find you a link.

 Reply posted for alanschachter.

Okay I'll bite was is an elemental diet! or Chicken? And all of  his meds are compunded into liquid so there really isn't a meatl taste.....I don't guess?  

 Reply posted for AZMOM.

We did introduce him to Boost Breeze! But, I have to camaflage it with either gatorade or pediylte and water. That's all he drinks anyway. I have spoken with one of his doctor's and I  don't think that he knows how to deal with this. Let's face it they really don't know what Crohn's is less long know how to deal with a baby with it!  The is deifinatlety a challange for everyone invovled. As far as appetite stim's They can offer it to him,but he's just a baby. We have to let is little body do what it does naturally. Otherwise I am afraid that he will be dependant on "drugs"n to get him through. His dad just call me (I'm @ wk) he ate a whole bowl of soup! Let's see how the rest of the night goes. Wish me LUCK!

 Reply posted for AZMOM.

I meant to also ask if your doctor has talked about any of the elemental formulas?  They are not supposed to taste great but if he would drink it, it would be a complete diet.  When we were in the hospital we shared a room with a baby with a protein allergy that had to have the elemental formula until he was a year old.

 Reply posted for saddenmom14.

Bless your heart - I can't imagine how worried you are.  I know there are medicines that are appetite stimulants for cancer patients but honestly, I don't know that they can be used in children.  Have you talked to the doctor?  Is he maintaining his weight?  I'm glad he is taking fluids but I can only imagine that you are at your wits' end.  Let us know how things are going for you.