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Parent advice.. year old with Crohn's.

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Crohn's Disease
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Posted 3/7/2009 4:09 AM (GMT 0)
Hi! My name is Pauletta. I have a 6 year old little boy that has Crohn's. He started having problem when he was 2 years old. I searched for 3 years trying to find out what is wrong with him and now I know and I don't want to know. I don't know where to start. Is there anyone out there that has been through this with a small child? How did you medicate? How did you help them when they are in so much pain? Thanks in advance
Posted 3/7/2009 12:27 PM (GMT 0)
Hi There are a few here that do have little ones with crohn's and hopefully they will be along to help.. On dealing with my own disease though I follow low roughage diet as it is easy to digest which probably saves me alot of problems and pain .. where is his crohn's located? lol gail
Posted 3/7/2009 2:35 PM (GMT 0)
Wow that is something I hate hearing, one so little with this disease! How did you find out he had Crohns? Did he have tests etc? If you have not seen a pediatric GI I would suggest you get him into one soon. Crohns can mimic conditions like Celiac Disease. He should start off having a colonoscopy. This is usually the first test they do.

Also, there is another forum for parents of young children called "Dragonpack" that may be able to give you suggestions for a young child from other parents living with the same.

I wish you good luck and am sending healing prayers for your little guy.

Hugs,
Gail *Nanners*
Posted 3/7/2009 3:02 PM (GMT 0)

Pauletta,

Sorry to hear about your son.  My son also has Crohn's disease, although he was 11 when he was diagnosed.  I just wanted to give you the website address for the Dragonpack site that was mentioned.  There are parents on there with very young children also who can help you with what you are going through.

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

Take care,


Posted 3/7/2009 7:48 PM (GMT 0)
First Thank you all so much for that website! He has had a colonscopy and just to make sure they also did a endoscope. His biopsy's came back abnormal. His white blood cells were high and his sed rate was out the roof. He was also anemic. We couldn't maintain his weight and he got to where he didn't even want to try to eat for the pain. He was in remission for about 6 months and as of this week it has all started again and then they finally after 3 years gave him a diagnoses of Crohn's. They started him of salfasalazine. I am really nervus with using this drug so I wanted to know if others has tried it? Thank you all again!
Pauletta
Posted 3/7/2009 8:22 PM (GMT 0)
Pauletta,
Just wanted to tell you I'm glad you posted. And I hope you find the help you are in need of! Hope that little guy of yours gets to feeling better soon!
Posted 3/7/2009 9:49 PM (GMT 0)
Hi I have not tried that med but did a read up on it and I see one of the side effects can be anemic, I tried Imuran and Remicade and of course prednisone at times..Pain can be caused by gas or other problems and chewing good and eating easy to chew foods helps in this area.. what did the Dr. suggest to get his blood in better condition.. lol gail
Posted 3/8/2009 1:34 AM (GMT 0)
They gave him a iron shot...and just the sulasalazine...
Posted 3/8/2009 1:48 AM (GMT 0)
The med they put him on is in the same family as Pentasa and Asacol. These are generally the starting meds they start with. I would give it a chance to see if it works for him before trying any of the stronger meds. I only take Asacol and it works well for me. Good luck!
Posted 3/8/2009 5:08 AM (GMT 0)
I'm sorry to hear that your son is having issues. I was 10 when I started having issues and it was not fun at all. I was terrified that all my friends would find out and hated when I got invited to go to all sleepover party. I would not wish that misery on anyone.

I'll tell you the best advice that I can think of. Make sure your kids school teachers know the situation. It helped tremendously to know that I didn't have to worry about getting a hall pass to use the restroom.

Hope things work out for you all.

-K
Posted 3/17/2009 6:21 AM (GMT 0)
Hi! I have registered for this website 3 times and I have never heard back from it at all:
http://www.dragonpack.com/ibdsupport/parents/index.html

Is there any other websites for parents of children with Crohns?
Posted 3/18/2009 4:39 AM (GMT 0)
I'm really sorry to hear of your struggle.  I have a 10 yr old who was just diagnosed in December.  It has been a hard 3 months.  She was on Prednisone for 6 weeks and now Asacol.  Last week she had her first flare ---- she was doing so well for months.

Email me if you need to chat -- I totally understand how hard it is with a young child because they just don't understand.

Posted 3/18/2009 4:40 AM (GMT 0)
I have also tried to register with the Dragon Pack website and have never received a response, which really bums me out because I really need a website for parents!!!!!!
Posted 3/18/2009 10:46 PM (GMT 0)
Hi, I'm very sorry to hear about your son's condition. My son was diagnosed at 4, he's 10 now. If your guy responds well to the sulfasalazine, keep him on it and be very grateful that it's the only med he needs to maintain remission. Sulfasalazine is among the first line meds and among the safest with fewest side effects and long term risks. Do not skimp on the dose, follow the prescription exactly and stay in close communication with your son's GI. If you aren't comfortable with his GI, get another one. There are good one's out there and plenty that are not. As for Dragonpack, I've never found it useful. I prefer healingwell.

Best wishes and keep us posted about your boy.
Posted 3/18/2009 11:35 PM (GMT 0)
So sorry to hear about your little one! I just wanted to let you know of a possible option. There is a diet called the Specific Carbohydrate Diet that helps some people with crohn's and other digestive ailments. There are some mom's of kids with crohn's on the SCD yahoo groups. If it's something that you would like to look into, I can give you a list of resources. Also, if you just want to ask some parents how their crohn's kids are doing on the diet, you can join the groups below and post a query. Good luck!

http://health.groups.yahoo.com/group/BTVC-SCD/
http://health.groups.yahoo.com/group/pecanbread/
Posted 3/19/2009 2:06 AM (GMT 0)
I'm also so sorry your little boy is sick with this disease.

I suggest you get him on some children's probiotics (Udo's is a good one). A probiotic is best when there are several strains of organisms as in Udo's.

I also suggest you prepare mostly natural foods for him. Cut out processed food and sugar; these are major aggravators for us with CD.

I agree with getting him to see a pediatrician that specializes in crohn's.

I sure hope he'll get better soon.

Posted 3/20/2009 3:23 AM (GMT 0)
Thank you all! I am taking him to Cincinnati Children Hospital to a Peds GI on April 6th......Wish us some good news because we really need it...Thank you all for all the good advise it is so helpful!
Posted 3/20/2009 6:47 PM (GMT 0)

I would really like to hear from people as to what has worked for their children.  My child just turned eleven and we waited almost 2 years for a proper diagnosis of Chron's.  He is currently on pentassa, imuran, coulterelle, and prednisone.  He is also taking fortified shakes to try to gain weight.  Problem is that they are talking about discontinuing the imuran because he is still having pain when off the prednisone.  They are talking about Remicade.  Anyone have a child that has been on remicade?  If so, side effects, etc would be helpful to know about!

Thank you!

Posted 3/20/2009 7:17 PM (GMT 0)
MelMann, though my son had just turned 15 when he was diagnosed, he did show signs at your son's age. We've had GREAT success with the diet mentioned by Spookyhurst. The book which puts forth the diet is called "Breaking the Vicious Cycle" by Elaine Gottschall. There are extensive internet resources and support groups for parents of children following this diet. Best wishes! I hope he feels better real soon!
Posted 3/20/2009 7:22 PM (GMT 0)
Asacol and Prednisone have worked best for my daughter. Currently she is on 2400 mg of Asacol.
I know of a 13 yr old girl taking Remicade and it has been great for her. She goes every 8 weeks to the hospital for the 4 hr infusion. It costs a fortune (about $900 after insurance copays) but it is worth every penny to give her as normal of a life as possible.
Good luck to you - please contact me if you want to chat more
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