Parent advice.. year old with Crohn's.

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pauletta24
New Member


Date Joined Jun 2008
Total Posts : 6
   Posted 3/6/2009 9:09 PM (GMT -7)   
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

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 3/7/2009 5:27 AM (GMT -7)   
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
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/7/2009 7:35 AM (GMT -7)   
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*
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

BensMom
Regular Member


Date Joined Mar 2006
Total Posts : 57
   Posted 3/7/2009 8:02 AM (GMT -7)   

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,

 



Nancy
 
Son Ben, 14, diagnosed 3/06
Remicade, Asacol, Fisol, SeaCure, Multi-vitamin


pauletta24
New Member


Date Joined Jun 2008
Total Posts : 6
   Posted 3/7/2009 12:48 PM (GMT -7)   
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

Becky77
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Date Joined Dec 2005
Total Posts : 1768
   Posted 3/7/2009 1:22 PM (GMT -7)   
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!
Becky

31 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05
Currently on Humira, Prilosec, Effexor, Calcium, Vit D, sublingual B12


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 3/7/2009 2:49 PM (GMT -7)   
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
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


pauletta24
New Member


Date Joined Jun 2008
Total Posts : 6
   Posted 3/7/2009 6:34 PM (GMT -7)   
They gave him a iron shot...and just the sulasalazine...

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/7/2009 6:48 PM (GMT -7)   
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!
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

annyb
Regular Member


Date Joined Feb 2009
Total Posts : 62
   Posted 3/7/2009 10:08 PM (GMT -7)   
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
Crohn's Disease - 29 years
Diagnosed at age 10 in 1979
1st ileosecal resection 1989
2nd colon resection 1993
Chronic "D" and arthritis
Chronic rectal stricture with colonoscopy every 3 months to dialate
Insomnia since 1980 - I love my ambien!
 
SCUBA diver, Master's degree student, college graduate, Pet therapist
 


pauletta24
New Member


Date Joined Jun 2008
Total Posts : 6
   Posted 3/16/2009 11:21 PM (GMT -7)   
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?

MustLoveDogs
Regular Member


Date Joined Jan 2009
Total Posts : 394
   Posted 3/17/2009 9:39 PM (GMT -7)   
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.
Gwen
 
10 yr old daughter diagnosed with "UC-like Crohn's" 12/08
currently on 2400 mg Asacol and 50 mg 6-MP


MustLoveDogs
Regular Member


Date Joined Jan 2009
Total Posts : 394
   Posted 3/17/2009 9:40 PM (GMT -7)   
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!!!!!!
Gwen
 
10 yr old daughter diagnosed with "UC-like Crohn's" 12/08
currently on 2400 mg Asacol and 50 mg 6-MP


JsMom
Regular Member


Date Joined Jul 2006
Total Posts : 57
   Posted 3/18/2009 3:46 PM (GMT -7)   
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.
JsMom

Son, age 9, diagnosed with UC age 4, no relief or at best temporary relief from conventional meds, probiotics, SCD, colectomy with perm. ileostomy 2007. Diagnosed with Crohn's 3/08. Currently on Remicade, fish oil supplements, daily multivitamin, Digestive Advantage chron's colitis formula has no effect, it's like spitting in the ocean.


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 3/18/2009 4:35 PM (GMT -7)   
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/

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 3/18/2009 7:06 PM (GMT -7)   
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.

pauletta24
New Member


Date Joined Jun 2008
Total Posts : 6
   Posted 3/19/2009 8:23 PM (GMT -7)   
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!

MelMann
New Member


Date Joined Mar 2009
Total Posts : 2
   Posted 3/20/2009 11:47 AM (GMT -7)   

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!


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 3/20/2009 12:17 PM (GMT -7)   
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!
Mom to 16 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium w/D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too.


MustLoveDogs
Regular Member


Date Joined Jan 2009
Total Posts : 394
   Posted 3/20/2009 12:22 PM (GMT -7)   
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
Gwen
 
10 yr old daughter diagnosed with "UC-like Crohn's" 12/08
currently on 2400 mg Asacol 

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