My 17 month old son has Crohn's...

[Bumpkins]

Hi everyone... I came here to learn more about Crohn's and try to find some answers. My son was diagnosed with Crohn's at 14 months old. He started displaying Crohn's symptoms when I weaned him from breastfeeding at 11 months old.

Now today he is 17 months old and weighs 20.8 pounds. He was born at a healthy 8.10 pounds at birth and today is below the 3rd percentile for weight because of his battle with Crohn's. He has been on 5 ml of Prednisone since 4/28/2011, well over 2 weeks. The Prednisone is not working and he is having side effects from the medication. He is having frequent poops still and not eating hardly at all. He is not sleeping well at night due to the steroids. About a week and a half ago I found a blister on his hip. The blister got huge within a day and turned into a big sore. It went away with antifungal cream. Could a blister be due to the Crohn's?

The only other medications he has been on was Pentasa for a very short time because it made him even more sick. And he takes Zantac daily.

My sons symptoms are distended belly at times. His belly button used to be an innie and now it is an outie because of the bloat. He is very thin and has a poor appetite. He cries often for no reason but I think it's due to stomach pains. He has gas often and frequent bowl movements. He also has white or cream colored poop often. He also projectile vomits without warning or sound whatever is in his stomach and intestines sometimes.

He is being seen by a pediatric GI dr. that diagnosed him because he was referred as faliure to thrive at first.

Does anyone have any insight or thoughts on my son?? I am very concerned and scared...

 

[Becca1991]

So sorry to hear about your son.

When i was born i was also put down as failure to thrive as i was not putting weight on and not eating well or drinking and crying heaps from what they thought was stomach pain.

Has he been tested for allergies tried different milks or supplement drinks for infants or any tests like colonoscopy or reflux studies??

Hope all gets sorted ut for your son

 

[Bumpkins]

He has had tons of allergy testing and he has no allergies. He had an endo and colonoscopy. He also had a small bowl study where he drank barium and they x-rayed it going down. They tested him for celiac disease twice. I got a call today from the Dr. office. They said his Prednisone should have started working within 48 hours to releive symptoms. It has now been 19 days on Prednisone. It isn't even good for anyone to be on it that long at a high dose and it has long term side effects. He did not sleep at all last night tossing and turning crying and crying. He is usually the happiest little guy but these past couple weeks he has been crying off and on all day.

 

[Awbrey]

Bumpkins,
Just a quick question, y0u said he was tested for allergies but did the doc's ever have you take him off milk and try soy? I have been reading a ton of books and my son when he was born had some of the same problems, however he was spit up lost tons of weight and we experimented and took him off milk completely used soy (allergy test by doctor came back fine) and he gained weight within a few days and was so much happier, just throwing that out there :-( I hate to hear of a baby having issues just not fair.

 

[Bumpkins]

Yeah even though he tested negative for milk allergies too I had him on soy and lactose free milk for a month and it still didn't help... Good idea though because some people have a hard time breaking down the lactose and get stomach symptoms and poops.

 

[Nancy Lee]

Hello Bumpkins and welcome to the Crohn's Forum.
It always makes me so sad to hear of a wee one who has been
diagnosed with Crohn's.
It's so very hard on the parents as well as the child
especially when they don't understand and can't verbalize
what they are feeling.

We do have a forum here for the parents with children of Crohn's-

http://www.crohnsforum.com/forumdisplay.php?f=49

I'm sure you will get a lot of information from other parents in the same boat.
Once again welcome...
Hugs~Nancy

 

[xJillx]

Hi Bumpkins. I am so very sorry to hear about your son's diagnosis. Being that Pentasa didn't work, did your doctor suggest another treatment plan? I sure hope your son will soon find the right meds that gets his Crohn's under control.

As Nancy Lee suggested, check out the Parents of Kids with IBD sub-forum. I am sure you'll get a lot of good advice there.

 

[Dixiedoll23]

My 5th son is almost 15 months, and I can't imagine the suffering you as a mother must be feeling for him.I know when my boys are sick, I do everything I can to make them feel better.It is an awful feeling knowing there is not much you can do to help.I went through all that hurt and emotions when my 3 yo was diagnosed with wilms tumor, a form of kidney cancer.

My heart aches for you and your son. I really hope the doctors can find a medicine that is right for him, and will help with his symptoms.I would see about getting him on something different and exploring more options if the prednisone doesn't seem to be very effective?

I would also like to reccomend something.I know my doctors told me that many of us who have crohns are also lactose intolerant.Whatever the case may be with your son, milk is still an important part of his diet right now.I would reccomend switching him to goats milk.Goats milk is much easier to digest than cows milk, and is sweeter.Do some research and see what you think.I've always bought the powder goats milk, but you can get the canned or fresh depending on where you live.
Also I would start researching different natural remmedies that would be safe for him.I know since I have started taking a probiotic daily, my stomach has been feeling much better.See if you can get him to eat a bit of yogurt for you.It will help restore the good bacteria in his belly.I hope some of this helps!

Good luck.

 

[ameslouise]

Hi Bumpkins and welcome!

You'll find lots of good advice and really kind people here dealing with IBD in their kids. You are not alone! Good luck, I hope you find something that works soon for your little guy.

- Amy

 

[Bumpkins]

Thanks everyone for the support. I have posted about my son in the parent of kids IBD forum. I have ulcerative colitis so I can somewhat relate to what my son is going through. But it is frustrating when something cannot be fixed...

 

[Ari]

Hi Bumpkins and welcome!

Children around his age often get a lot of liver related problems including hep a. That can give yr child a lot of symptoms you described. Has he got jaundice? I'd give him an extra 1000ml of vit C per day together with vit B group and vit E and try to strengthen his immune system instead of lowering it with prednisone. Also, try juicing fresh mandarins or oranges, dilute the juice with water and give it to him to drink. He's loosing a lot nutrients and amino acids which is why you should consider buying a tester of casin protein from a body building shop and give to him with food and see how it goes. There are a lot of people out there who have been misdiagnosed and vitamins won't hurt.

Take care.

 

[Bumpkins]

Hi Ari!
Thanks for your response. I am all for vitamins but the GI dr. doesn't want me giving him any and I don't know why. The citrus would be good but his gut doesn't handle it well and it makes him even sicker with frequent loose stool. I will have to research Hep A I have never heard of it. I will be talking to the GI dr. about vitamins because the prednisone has definitely lowered his immune system. Today he has a low grade fever, runny nose, and cough. I took him in for blood work today and weighed him too. He weighs 20 pounds and 8 ounces and that's what he weighed a couple weeks ago. He is now below the 3rd percentile for weight. Now I wait for test results from the stool and blood work. Have you heard of kids getting blisters or ulcers from Crohn's on their body? Ethan had a huge blister/ulcer with yellow fluid in it that got bigger and wouldn't go away for about a week...

 

[Ari]

Hm..Yellow fluid suggest that there's a great number of white blood cells in it and that means he has an infection, but you can only be certain when you have it swabbed and tested. You can't be sure that the antifungal cream worked either. It is possible that his body took care of it.

Here are some of the side effects of zantac.

chest pain, fever, feeling short of breath, coughing up green or yellow mucus;

easy bruising or bleeding, unusual weakness;

fast or slow heart rate;

problems with your vision;

fever, sore throat, and headache with a severe blistering, peeling, and red skin rash; or

nausea, stomach pain, low fever, loss of appetite, dark urine, clay-colored stools, jaundice (yellowing of the skin or eyes).

Hm... maybe it's time you stopped giving it to your child...

 

[Bumpkins]

The only bad thing is when I stop giving him the Zantac (which was prescribed by his GI Dr. he projectile vomits every day.) When he takes it he doesn't vomit. I will have to wait and see what the Dr. says. I am thinking that the blister is more from the prednisone or the crohn's. I will ask the Dr. about it being from the Zantac...

 

[Ari]

Yeah, yr right it can be from the pred as well. I've never heard about getting blisters from Crohn's, but everybody's different and maybe his disease is doing it to him.

Poor boy. That's so sad that he has to go through that. He's just too little for it... :hug:

 

[DustyKat]

Hi again Ashley!

Answered your thread in the parent's forum but missed the bit about the blister. I have heard/read that blisters can be an extra intestinal manifestation of Crohns when flaring. Since your son doesn't seem to be responding treatment perhaps this is the cause of the blister. Either way I would speak to the GI about it.

Dusty. :hug:

 

[Bumpkins]

When I called the GI about the blister yesterday they were thinking that it may be from the meds. I know that prednisone can make your skin thin. Maybe his diaper rubbed slightly and caused the blister. Good to know it probably isn't the Crohn's that gave him a blister...Hoping for more answers at the end of the week when we get all tests back...

 

[Astra]

Hi Ashley
and welcome

So sorry for your little fella, it's hard enough for adults!
Just a thought, has Ethan had his liver checked? White or cream poo could mean that there's no bile from the liver to digest food.
Hope you get some answers soon, take care
Joan xxx

 

[mayhavecrohn's]

i am so sorry what your son is going through poor baby boy i hate to see kids cry and be sick like this i dont have any kids yet but i am hoping some day i will be able to have kids