Just found out my six year old daughter has cd

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Mmsills
New Member


Date Joined Dec 2012
Total Posts : 6
   Posted 12/14/2012 11:59 PM (GMT -6)   
In shock and looking for answers on what we should do
Should we change are daughters diet should we be looking for alternative medicine or just trust the doctors

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 1256
   Posted 12/15/2012 12:26 AM (GMT -6)   
Oh my goodness, I am so sorry. That is so hard. What a young age to be dealing with this.

As to your questions, a bit of all three, to be honest. Alternative medicine can be helpful, but it can't control everyone's. Each person's diet is different as well - some people can't have gluten and/or dairy, but others are just fine. Right now, I'm actually on a high fiber diet which is new (my first time in remission since I was diagnosed).

But also trust your doctors. Look for one that is ok with alternative medicines (doesn't discount it entirely), but honestly, I would be afraid to rely on just those. I do Chinese medicine, acupuncture, and chiropractic in addition to Remicade infusions and I think it's a combination of all of it that's what keeps me healthiest.
CD 2010, Fistula, Pancreatitis, C. Diff.
Current: Remicade
Previous: Prednisone, Imuran, and Asacol

"These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world." John 16:33

ihavefaith
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Date Joined Feb 2011
Total Posts : 8
   Posted 12/15/2012 1:00 AM (GMT -6)   
I think it all depends on where you're at with the dis-ease. My son was 11 and that was almost 2years ago, seems like yesterday though. He was down to 65 pounds, borderline anemic and had 4fistulas. He was in the washroom loosing fairly large amounts of blood and in pain all the time. He was throwing up at random and it was the most terrified I think I will ever be in my life. I would love to look into alternative medicine and change of diet but his GI is the one we have gone with so far. He has grown 4 inches and now weighs 110pounds, no low iron,no vomiting, nothing abnormal in the way of the washroom or anything else and all 4 fistula are healed. We try to eat well and the only thing I have restricted is drinking milk. Like I said, I would love to try something less harsh than all the medication
But I worry that we may slip backwards after so much progress. What ever decision you make will be the right one because it will be in your girls best interest. Listen to what her doctor says and then see what a naturopath has to say. That will be my next step now that his health is better I have to at least hear what they can do to help.

It is so much to take in especially when it's your baby. There are so many different ways to go but the most important part is already done, you know what she has and now you move forward also make sure to take care of yourself as well.

Wish yous all the best.

Mmsills
New Member


Date Joined Dec 2012
Total Posts : 6
   Posted 12/15/2012 11:54 AM (GMT -6)   
So far the doctor has started her on 6 mg of prednisone we have changed her milk to almond still researching cd as I had not heard of it before Thursday. Thanks for the replies god bless

kazbern
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Date Joined May 2010
Total Posts : 7519
   Posted 12/15/2012 12:35 PM (GMT -6)   
I think you mean 60 mg of prednisone. Is your daughter able to eat? Is she losing a lot of blood?

The thing about diet is that, in my opinion, there are two different goals. One goal, which is easy or hard depending on your daughter, is to relieve symptoms by changing her diet. Eliminating lactose and casein by going to almond milk might help, or it might not. It's worth your time to keep a food journal to see if you can identify foods that are bothering her (causing pain or discomfort or nausea when she eats). The main culprits here are lactose and gluten, but you should also consider raw veggies and uncooked fruit as potential irritants, especially now before the medications begin to be effective. She might be able to reintroduce a lot of foods as she feels better.

The second goal is to change the course of the disease by a significant and targeting dietary modification. I think this is much harder to do. With such a young child, one thing that you might consider in the short term is a completely liquid diet. This has been shown to be just as effective in inducing remission as taking steroids (the prednisone her GI has put her on). Prednisone is a very effective medication but it is potentially very harmful for growing kids. I completely understand why your GI would choose that right now (I assume your daughter is very ill and needs a quick recovery) but in future flares you would be well advised to avoid it if you can.

A dietary regimen that has been shown to be effective in treating Crohn's is called the Specific Carbohydrate Diet. You should read about it at length before deciding to try it. It can be quite strict. While your daughter is young you shouldn't have too many problems implementing it, but it will be very hard for her to follow it while at school or birthday parties, etc. There are plenty of parents these days who have their kids on restrictive diets, so hopefully if you choose that it will not be so unusual, but I would advise you to think hard about how much you want to focus on this in your family. Adherence appears to be critical to achieving success.

I'm sorry that your daughter is so ill and I hope she gets better quickly. I am so glad you found this forum.
*******************
50 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day)Colazal (96 pills/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), mesalamine enema as needed. Gluten free as of 5/30/11. Colonoscopy found no evidence of inflammation on 8/16/12.

Mmsills
New Member


Date Joined Dec 2012
Total Posts : 6
   Posted 12/15/2012 11:16 PM (GMT -6)   
She's taking 6 ml of predisone. My daughters symptoms are she has frequent loose stools lack of energy didn't gain any weight in a year.
Complains of tummy ache after eating.sleep is restless . Her appetite has increased a lot the last two days since starting the predisone
Looking forward for more advice. Reading about the different diets but my daughter doesn't like a lot of different foods

Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 503
   Posted 12/16/2012 8:49 AM (GMT -6)   
Hi,
 
I really am sorry to hear about your daughter having crohns at 6 years old.  (((hugs)))  I think you will find what foods bother her more than others as you go along.  What foods bother me might be fine for the next person and vise versa.  As the prednisone does its job reducing inflammation her pain should decrease.  Increased appetite is very common on pred.  She should also have more energy.  On the plus side at least there are alot of new medications out the for your daughter.  I think I would keep a journal about meds, bowel movements and what foods seem to bother her more than others.  I would stay away from spicy foods, and salads are also hard to digest.  ie sting in celery.  Cooked vegetables are easier for me to digest.  Does she have blood in her stool, and if so how much? these are things that the doc needs to know. 
 
All the best to you and your daughter.
 
Julia
 

Mmsills
New Member


Date Joined Dec 2012
Total Posts : 6
   Posted 12/16/2012 10:56 PM (GMT -6)   
Yes she has a little blood in stool
We are staying away from spicy foods and changed her milk to lactose free
Thanks for the advice

SupportiveMom
Regular Member


Date Joined Sep 2012
Total Posts : 257
   Posted 12/22/2012 11:27 PM (GMT -6)   
Looking back on the worst days with this disease for my daughter I have to say a food journal & bowel journal made all the difference in the world to learn what helped & what did not. It is so hard to figure things out for someone else when you aren't the one with the pain. We were in the hospital for almost a month on a no food diet (only IV,TPN), down 30 lbs, vomit & stool with blood and still the blood didn't stop until Prednisone & Remicade were both in the system. I hope you are able to get this all under control with the Prednisone. From what I read from ihavefaith I think the stories are similar for our kids.

For my daughter a lot of this has been trial & error. At least there won't be much at 6 she has had & will really miss. You are in the worst of it now. Things get better once she gets in remission. Big hugs.. I know it is scary. Just know you are not alone. The boards here & in UC really help. There are some great people here!
12 daughter diagnosed with severe indeterminate colitis September 2012 (at age 11) - now confirmed Crohn's
Remicade, Prevacid, finally Prednisone free!
Dairy free diet

pmedic
Veteran Member


Date Joined Nov 2009
Total Posts : 1437
   Posted 12/23/2012 2:15 PM (GMT -6)   
Mmsills- I am sorry to hear of the recent diagnosis of your daughter. Reading your post reminded me of a friend who recently passed from a heart issue. This great man, Alan Schachter, has a daughter was diagnosed at a young age also. Alan was very concerned about side effects of the crohns medications on his daughters health, so he went on a quest to manage her disease as naturally as possible. After much research, he learned to manage her disease with the Paleo diet, LDN ( which he praised highly) and natural supplements. He has a web site which is now managed by his daughter, who is a young adult. It is Crohnsdad.com . He has some very technical and practical information there that you may find very useful.

I wish you and your daughter the very best. Please keep us posted on how she is doing!
Dx:Ulcerative Colitis March 2008
Dx: Crohns May 2008
Avascular necrosis bilateral knees from Prednisone. Surgery on left knee was Oct 2011,
No colon surgeries yet but I am desperately trying to keep my colon.
8 blood transfusions, SVT due to low H&H, Anxiety during new medication injections due to past reactions.
Currently on Lialda, Ambien, xanax(prn) D3, probiotic, Rowasa, B12, fish oi

Datawraith
Regular Member


Date Joined Aug 2011
Total Posts : 263
   Posted 12/24/2012 8:18 PM (GMT -6)   
Hi Mmsills, welcome to the forums. As you can see there's a lot of experienced, knowledgeable, helpful and compassionate people here to help out.

Besides the advise you have received so far, if you haven't started already, I definitely recommend doing a lot of research too.
What is Crohn's disease?
www.ccfa.org/what-are-crohns-and-colitis/what-is-crohns-disease

There's many websites to educate yourself to help you decide what approaches to take and to deal with the disease. The diets, the foods, the tests, the medications, Etc. This also helps you in dealing with the GI's and what to ask, understanding what they're telling you and so on.
Please keep in touch and let us know what is going on with your daughter. Also don't hesitate to ask any questions that you may have.

Mmsills
New Member


Date Joined Dec 2012
Total Posts : 6
   Posted 1/1/2013 9:37 PM (GMT -6)   
The steroids seem to be working. She has gained about five pounds and seems to be in less pain. Only has a couple of bowel movements a day thanks for all the insight

joefigliano
New Member


Date Joined Dec 2012
Total Posts : 7
   Posted 1/1/2013 9:48 PM (GMT -6)   
I think steroids are a good temporary fix to get the body into some kind of shape. I don't believe they are any good long term. I would suggest researching what others have done for children long term that works and then going from there. From my understanding sometimes diet works, sometimes it doesn't and different diets work for different people, it is mostly trial and error. For some people alternative medicine works and for some conventional medicine works. It seems that you have a task ahead of you including educating your daughter, keep up the hope and persevere and you may just get there.

Best of luck and may your daughters health improve in 2013
www.joefigliano.com

NY-Sooner
Regular Member


Date Joined Sep 2009
Total Posts : 421
   Posted 1/3/2013 12:38 PM (GMT -6)   
Read the book "Breaking the Vicious Cycle"  It talks about how the author put her daughter into permenant remission by changing her diet to the SCD diet.  The diet does not always work for everyone, but it seems to work the best in newlly diagnosed people like your daughter. 
 
It is a very strict diet to follow, because you have to eliminate all foods containing any sugar, all processed and canned foods, all breads and grains, and all vegatables with carbs like potatoes, and all diary except certain types of cheeses y home made yogurt.  It has worked well for a lot of people, including myself.  I have been symptom free for 7 years since being the diet.   You have nothing to loose by trying it and you have all to gain if it works for your daughter. Just read the book and see what you think.  There is also a wealth of information on the internet and on this site if you have questions. 

Post Edited (NY-Sooner) : 1/4/2013 6:50:11 AM (GMT-7)


Mmsills
New Member


Date Joined Dec 2012
Total Posts : 6
   Posted 1/12/2013 3:43 PM (GMT -6)   
Now my daughters doc changed her medicine to mercaptopurine has anyone had much experience with this drug . Are daughter has been getting better and putting on some weight being on predizone

gkc
New Member


Date Joined Jan 2013
Total Posts : 15
   Posted 1/16/2013 9:02 PM (GMT -6)   
is she still on prednisone? finding the medicines that we respond to is a bit of a trial and error process and you have to be aware of the side effects of these medicines too. the steroids have a lot of side effects that one has to be aware of, restlessness, water retention(stay away from salt!) appetite increases etc. my daughter was diagnosised at 7 and she is 19 now and on remicade, she has tried so many meds and they also have to be changed at times as children change and grow. find a good doctor that your daughter feels comfortable with and explain things constantly to your daughter so she understands whats happening to her. god give you and your daughter strength and tenacity to fight this battle that you have ahead of you.
55 yr old crohns diagnosed in 1990, humira, mercaptopurine vitamin d and b lecithin,flax and borage oil, 19 yr old daughter with UC and a 54 yr old brother with UC

Miss_82
Regular Member


Date Joined Jul 2006
Total Posts : 73
   Posted 1/17/2013 11:18 AM (GMT -6)   
Hi Mmsills,

I know it must be hard for you seeing your daughter go through this and i know exactly how she must be feeling. I was also 6 years old when my symptoms started appearing.

I am not in a flare at the moment but my disease is active and my dr. has been trying to put me on 6mp for years now and i keep declining. He never proposed remicade, or humira before my surgery. Maybe i could have put the surgery on hold for another couple of years had i taken those meds. Who knows!

Don't blindly accept what the dr says. Your daughter is only 6 years old. She will have to live with this disease forever. Research is very important before agreeing to any kind of harsh drugs. Also, pay attention to her diet. It really makes a big difference in controlling symptoms.

At the end of the day it's your decision and you know what's best for her.

Keep us posted and stay strong! There is nothing worse than seeing your parents worry to death for you.
CD for 24 years
Bowel resection in Dec. 2006
Pentasa 4000mg
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