My 5 yr old daughter has just been diagnosed with Crohn's.....help

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Courtney L
New Member


Date Joined Jul 2009
Total Posts : 2
   Posted 7/29/2009 5:05 AM (GMT -7)   
Good Morning!

My name is Courtney and I am new here....My 5 yr old daughter has just been diagnosed with Crohn's.  Actually we go to Children's hospital today for another test to confirm the doctor's diagnosis.  Thankfully we live near Pittsburgh, PA (about 40 miles SE) so I feel very lucky to have such a wonderful hospital "in my back yard" that my daughter can go to.  I am very comfortable with the doctors and confident in their abilities.
 
I guess what I am looking for here is just a place to come to to vent, learn about the disease, treatments, complications, etc.  I feel like my brain is in overload with all of the info I have been reading over the last few days.  I guess it would just be nice to hear from other people and what they have gone through.
 
So if anyone can tell me what they have been through, what to expect, is there a certain diet my daughter should be on, anything and everything about this disease I would greatly appreciate it.
Thanks so much for your time!
Enjoy your day!
Courtney

BillyLitt
Regular Member


Date Joined Dec 2006
Total Posts : 53
   Posted 7/29/2009 6:09 AM (GMT -7)   
Hi.

My wife has Crohn's. She was diagnosed at 15 in '90. She got butchered when they did exploratory surgery because they had no idea what was wrong with her. When they figured out it was Crohn's, my wife's parents found a specialist and he did wonders for my wife. He is a Pittsburgh guy, Dr. Ram Chandra. He's a pediatric GI. His treatments can be aggressive, but he does everything he can to make sure his kids are able to live normal lives.

Unfortunately, there is no diet plan that is the same for two Crohn's patients. Food that is tougher to digest should be avoided or at least limited. Deep fried foods, certain vegetables like corn and skin on fruits. Food that is normally tough to digest for healthy people should be avoided. Just be careful and take notes. Learn what effects your child negatively and take note to avoid it in the future.

The best explanation of Crohn's disease was told by a doctor in the hospital when my wife was recovering from her last surgery. He said when a healthy person eats a chicken sandwich, it digests and leaves our body. When a Crohn's patients eats that same chicken sandwich, her body thinks "What the hell is that?" and attacks it which causes inflammation and swelling. Their goal in treating Crohn's is to keep her immune system from attacking the gut.

One of the most common treatments is immunosuppressants. This carries an increase risk for infections, but it does wonders with keeping Crohn's inactive. And the risk isn't all that much greater. Medications that my wife was on are 6MP and Humira, her current meds. She was on Remicade, Pentasa, Cyclosporine. One of the more common drugs, especially during flares, is Prednisone. This drug does wonders for active Crohn's, but it has its side effects. There are other drugs, but that's what my wife experienced.

Oh, another thing that will probably be on your mind and your daughters mind when she gets older. My wife was able to have two children in '02 and '05. She had a normal, natural birth to both even when she was on these immunosuppressants. 6MP was the drug that helped her get healthy enough for children.
Wife was diagnosed with moderate to severe Crohn's in '90 through exploratory surgery. Resection in '90 and '06.

Current meds are Humira, 6MP, Prilosec, Folic Acid, and vitamins.

Able to have 2 naturally born, healthy children in '02 and '05.


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 7/29/2009 6:22 AM (GMT -7)   
Hi Courtney and welcome! Sorry you and your daughter are dealing with this...

At the top of the threads on this forum there is a permanent thread titled "Crohn's Disease Resources". If you scroll down you'll see links for diets. The Specific Carbohydrate Diet (SCD) has helped thousands worldwide for decades. It is explained fully in the book "Breaking the Vicious Cycle" by Elaine Gottschall. You can also google SCD and access their extensive online resources.

My son was diagnosed at a major children's hospital just two years ago. Although I think the world of the doctors there, they are not advocates of any kind of diet. In fact, they told him quite the contrary--"no dietary restrictions or recommendations". It was here on this forum where I learned about the Maker's Diet and the SCD and I thank God for it!

I hope you are holding up... Sometimes I think this is harder on moms and dads than it is on the child... Remember you have new friends here who will try to help! I hope your daughter feels much better very soon, too!
Mom to 17 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium, vit. D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too. Med-free.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/29/2009 6:24 AM (GMT -7)   
Hi Courtney,

And welcome to Healingwell, just sorry you have to be here. It always makes me so sad when I read about children like your daughter being diagnosed so young. I was not diagnosed until I was 18.

Most of us have to find a diet that works well for us. Diet seems to be something that is very individual. What one can eat, another can't. I personally live on a low residue diet, you might want to google it to get some ideas of what to eat. Its an easy to chew, easy to digest type of diet. Others have success with the SCD or Makers Diet. But these diets are very strict and you must follow them to the letter for them to be successful. You can look at our resources thread above and find links to information about diets and medications.

I am also a big advocate of maintainence meds and believe everyone should always take some type of maintainence med to keep the inflammation in check at all times. Another helpful thing is probiotics. These help to balance out the bacteria in your intestines as we tend to have a bacterial imbalance in our intestinal tracts.

Again welcome to Healingwell, I look forward to hearing more from you and if you have any questions do not hesitate to ask. We have a wonderful group of people here trying to live with this disease too. Also, one other point, do not be frightened by some of the things you read here, most folks on this forum tend to be on the more severe side of Crohns. Not everyone experiences all the things some of our folks here do.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and 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, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and 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"*

Courtney L
New Member


Date Joined Jul 2009
Total Posts : 2
   Posted 7/30/2009 10:32 AM (GMT -7)   
Thank you all so much for your replies....I feel a little overwhelmed right now, hopefully we will be able to get on a diet or meds so that we cna manage this so my daughter can live a pretty normal life!

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 7/30/2009 1:10 PM (GMT -7)   
From one mom to another, HW has been very useful for me. But you might also be interested in the following support group for parents of IBDers:
 

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 7/30/2009 2:34 PM (GMT -7)   
Hello and welcome. I have had CD probably since I was about 13, I am 44 now, but my Mom also had CD, so I have lived my whole life with this disease. I still learn new things every day, so the feeling of being overwhelmed is not unusual. The best thing you can do for your daughter you are already doing. Learning everything you can. If you can afford to buy some books about CD, do that, otherwise just borrow from the library. Start by going to your library and reading some, then buy the ones that you find to be the most helpful. I have about 7 or 8 that I can refer back to when I feel I need to look something up. Two books that are excellent are "The First Year" By Jill Sklar. It will take you day by day, then week by week through the first year after diagnosis, written by a CD patient, who was a forum moderator on another web site. Another book that I find absolutely wonderful is "Cooking Well for the Unwell" by Eileen Behan. She is a dietitian. She has sections in her book that cover just about every diet that your daughters doctor might put her on, clear liquids, full liquids, extra protein, low residue, how to make every bite count to gain weight,.... But it is helpful to anyone who has any type of illness. I actually have 2 copies because I was always loaning it out and never had my copy when I wanted it. It isn't in print anymore, but you should be able to find it on amazon as a used book for about $4 or so. It is well worth it.

And please come here and ask any questions or vent anytime you need to.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

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