2 out of 4 kids with Crohns

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Kimilio
New Member


Date Joined Dec 2009
Total Posts : 8
   Posted 12/31/2009 11:10 AM (GMT -7)   
WOW! This is all so overwhelming.  I have a 10 year old son diagnosed with crohns in summer of 07. Had no typical symptoms (ie pain, bloody stool, diarrhea, etc). Discovered fistula. Before we were able to start treatment, he came down with a herpes virus that he couldn't fight off because of weakened immune system. Couldnt even swallow his own spit because sores went from his lips to his stomach. Spent 2 weeks in the hospital. Had to be tube fed for 8 weeks.  Used tube feedings as treatments since then. Has been on 6mp, switched to methotrexate and treated with entocort for ileum inflamation.  To date he is still not displaying any symptoms.  However, routine blood work and clinical testing (ie. MRI's, colonoscopy, barium xrays) indicate inflamation.  Doctor wanting to go with Remicade do to advanced stage and history of fistulas.  This terrifies me.  Have friends with crohns that have had horrible experiences with remicade.  One has suggested trying diet control.  He is a chiropractor and claims to have had success with it.  All reports I am hearing is that it controls syptoms for some sufferers, but as I mentioned he does not experience pain or diarrhea, etc. At his young age I am hesitant to jump to Remicade.  Any input from others that are asyptomatic regarding course of treatment experience greatly appreciated.

Information gathered helps with both of my sons. Since having youngest one diagnosed with it,  had other 2 sons tested since they seem to fit the profile more. And the oldest one has it. He is doing fine on 6mp. Daughter not tested but not showing signs or symptoms. I have hypothyroidism and had an uncle die of lupus. So there is a family tie to the auto-immune diseases. I am new to this researching on line stuff. What are some resources? Books, other types of doctors or specialists, etc.?
 

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/31/2009 11:15 AM (GMT -7)   
To find more information on Crohns you can go to CCFA.Org. I am so sorry to hear that your kids all have this horrible disease. My prayers go out to you all. I am currently in remission and successfully maintained solely with Asacol.

There is also another site that is for parents of young children with Crohns. Its called dragonpack.com. Maybe it might be helpful to you to talk to other parents dealing with the samething.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 12/31/2009 2:28 PM (GMT -7)   
Hi,

Sorry to hear about your kids :-(. I follow a special diet, the Specific Carbohydrate Diet (SCD). Is that what your chiropractor is recommending? It healed my fistulas in 4 months, but I've seen some people say it could take as long as a year. It also reduces inflammation. It's certainly something worth considering for your kids. At first glance, it looks quite daunting, but once you get into a groove, it's easy to follow. Here are a few links, but I can give you much more if you need it:

http://www.pecanbread.com/ - focused on kids with autism, but there are several parents of kids with crohn's that frequent their yahoo group. You can go to http://health.groups.yahoo.com/group/pecanbread/ to ask questions about whether you think your kids would benefit. There's a lady named Diane whose daughter has been on the diet for 2 years, and would tell you their experience.

http://www.scribd.com/doc/11844050/Breaking-the-Vicious-Cycle-by-the-late-Elaine-Gottschall# - you can read (or download) Breaking the Vicious Cycle here. This will tell you the science behind the diet, outlines how you should follow it, and also has a ton of recipes.

http://www.breakingtheviciouscycle.info/ - the main website for BTVC and following SCD

http://health.groups.yahoo.com/group/BTVC-SCD/ - another yahoo group, this one centered around gut issues, that you can ask questions at

There are a slew of recipe sites too, which show how yummy the foods on the diet really are.

Good luck! I hope you find something to help your kids!
34 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: Pentasa, Effexor XR, Zyrtec
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


newfoundsun
Regular Member


Date Joined Nov 2009
Total Posts : 145
   Posted 12/31/2009 2:38 PM (GMT -7)   
Wow!  Keep strong.  As mom, you will get through this!
 
I was just diagnosed in November, and up to that point the only symptom I had was excess gas.  I decided to take some time before going on drugs, and see what effect diet might have.  I started with Jordin Rubin's "Guts to Glory" program, and that gave me a ton of information on food and diet.  Now I am mixing in the SCD diet, and am doing very well on it.  I'll tell you it's not easy, but I do believe there is a validity there.  Not sure if I'll never have to go on drugs, but at least the diet aspect is helping for right now!
 
There are some great posts by emom and crazyharry about SCD and Maker's Diet.  Just do a search for them if you want more information, or email me and I can give you what I'm doing!
 
Stay strong, 
newfoundsun
 
http://www.newfoundsun.wordpress.com/  (my blog about this journey I have just started)
 
CD diagnosed 11/12/09
No meds yet, Garden of Life supplements


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 12/31/2009 9:44 PM (GMT -7)   
I'm so sorry your children are having to deal with this. I highly recommend checking out the Specific Carbohydrate Diet. Get the book, "Breaking the Vicious Cycle, Intestinal Health Through Diet" by Elaine Gottschall. It explains the diet and the science behind it.

I wouldn't be too afraid of the remicade. While there are some people who have had bad experiences there are many more who would call remicade a lifesaver. I was on remicade for 6 &1/2 years. I wish something like that had been available when I was 16 and diagnosed.

The others have posted great links (dragonpack, etc.) Those are a really great place to start. Hang in there mom. You've got a challenge in front of you, but there are a lot of great resources and this group here is a VERY supportive group.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/1/2010 9:30 AM (GMT -7)   
I agree that finding the right diet is important for your kids. Above they have mentioned the SCD diet, some have had success with the diet, others haven't. I personally follow a low residue diet and it works well for me, but is a little less restrictive than the SCD. But both diets are good for Crohns.

One other thing you should remember, and that is that diet and medications should be considered as complimentary to eachother. You should always have your kids on some type of maintainence meds. You have to remember that Crohns is a chronic and incurable bowel disease and must be treated at all times. I learned this the hard way and ended up with an emergency resection, because while I didn't want to put meds into my body, the Crohns was still in there doing its damage on a microscopic level and the damage continued until surgery was required. Good luck to you and your little ones, we look forward to hear how they are doing.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 10, 2016 7:16 PM (GMT -7)
There are a total of 2,736,162 posts in 301,358 threads.
View Active Threads


Who's Online
This forum has 151449 registered members. Please welcome our newest member, iwanttocry.
300 Guest(s), 13 Registered Member(s) are currently online.  Details
MARTINSR, calvin1242, bluelyme, mikeb2308, Michael_T, tickcheckguy, jennydancingfish, Gear, Xmaslover, Lymiemomster, poohcheez, Annie88, julymorning


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer