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One year old with Crohn's

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Crohn's Disease
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Posted 1/10/2010 8:28 AM (GMT 0)
Hello everyone. My son was just diagnosed with Crohn's a little over a month ago which just so happened to be the week after his first birthday. We have been dealing with symptoms of the disease since he was 4 months old. We've already been hospitalized twice, a week each time. I am wondering if anyone was diagnosed so young or has know anyone who was. He started on sulfasalazine about a month ago and there doesn't seem to be any changes. Do these meds just take a while to work? Are there other meds that a 13 month old can safely take if the sulfasalazine doesn't help? We are feeling pretty overwhelmed because we don't know what else we can do to help him feel better so he can sleep, eat and just be a normal one year old. Every time he has gotten even a cold it turns into a trip to the ER because he gets so sick. Is this normal with Crohn's? We have tried changing his diet and nothing seems to help. He is still only eating soft baby foods and maybe some bananas and toast. He also seems to get very severe pain with any gas; is this normal? Any advice at all would be so much appreciated!!
Posted 1/10/2010 1:46 PM (GMT 0)
I'm so sorry to hear that about your son, it's bad enough that we as adults have to deal with this and now a 1 year old.
I can't answer your questions as I have never heard someone so young to experience this DD.
I hope it gets well soon! How did they diagnose him?
Posted 1/10/2010 3:19 PM (GMT 0)
Hi Pa'a's Mom and welcome to Healingwell. It breaks my heart to hear of one so young with this horrible disease. I do not have any medication recommendations for you, but I did want to provide you a link to a site for parents with young children with IBD, they might have more suggestions for you. Here it is:

http://www.dragonpack.com/ibdsupport/parents/

Good luck,
Gail*Nanners*
Posted 1/15/2010 2:02 AM (GMT 0)
My son exhibited symptoms at 9 months and was diagnosed at 2 years. In and out of hospital a lot and it has been very tough, but he is now almost three and is still here and doing pretty good. We have not reached anything close to remission except on steroids and he cant be on those any more.

In Europe they use enternal nutrition with things like non-allergenic powder supplements like Elecare. If you can get your doc to prescribe elecare and use it to mix high-calorie shakes, that could help keep weight on possibly. If your son is bleeding a lot keep an eye on his color and energy levels. It is easy for him to get dangerously anemic. My son was sick all the time coughing through the night when his disease first manifested. It was hard, but that part of things eased up and got better. When they get sick it does seem to effect the disease. My son's ulcers always got much worse when he has a cold or something, attributed to his immune response ramping up.

Perhaps a good probiotic intended for children could help with the gas pain and bloating. There is a good chance that he has a bacterial imbalance of his gut flora, especially if he has been on antibiotics. It sounds like you have experimented with diet. The SCD diet is one that people recommend. We make things like muffins and healthy cookie-type things with almond flour and honey. Nut butters are a way to get calories and fats in him. We make pancakes with one egg to one mashed up banana fried in coconut oil that are a huge hit with my son and even his friends. We also use rice flour bread because we are limiting gluten-based products.

My son has been through sulfasalazine, prednisolone, Imuran, LDN, Remicade and we are now adding Methotrexate. He has not had any severe side effects, except for not growing at all while on prednisolone. But nothing has worked yet to put him in remission. Best of luck and keep asking questions. You are your son's greatest champion.
Posted 1/15/2010 2:11 PM (GMT 0)
Hi Pa'a's_mom,
I am so sorry to hear you had to join us because of your young child, but you have come to a good place.
I am a strong believer enteral nutrition is the way to go, specially with kids, but you might not find a lot of support from doctors due to a lack of information. If your doctor works with a nutritionist, that is the way to go. Although there are many clinical trails to prove it's effectiveness, the word is still taking time to get around.

Check out this book: "Beat Crohn's: Getting to remission with enteral nutrition" By Margaret Oppenheimer. Some trails have shown a success rate of over 90% in children.

I have a 12 year old who was diagnosed at 10. We had gone through a lot of meds, and finally they stopped working. She did total enteral nutrition orally for 6 weeks (this is drinking an elemental formula). It stopped the symptoms in a couple of days. She put on 17 pounds in 11 weeks! She is doing wonderfully. She can eat normally and supplements with the formula.
There are many formulas for your child, many for very small children. The one we finally settled on is E028 Splash. You can get in on line. It comes in 3 flavors in juice like boxes.
We also give her Omega 3 and Probiotics. There is one probiotic you might want to check out: Primal Defense Kids. You have to start really slow.
I hope this helps.
Let me know if you need any other help...
Posted 1/15/2010 8:19 PM (GMT 0)
Pa'a's_mom

Contact your local ccfa chapter and they should be able to provide you with resources to help you and your son out.

PK
Posted 1/15/2010 10:45 PM (GMT 0)
Others have covered some very important info, I'd just like to add that banna's may trigger symptoms, they do with me, I'd suggest you experiment to see.
Posted 1/15/2010 11:47 PM (GMT 0)
Hi Pa'sa's mom My son was diagnosed with Chron's at 2 months old. He started showing symptoms at one week old. He went into the hospital at 3 weeks old with a high fever multiple bowel movements blood loss and severe infection . We were in the hospital until he was 3 months old. Countless tests medication and ultimately surgery put us on what has been a bumpy road to success. So I know what you are going through.
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