Just found out my six year old daughter has cd

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

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.

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.

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

 

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!

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.

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

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

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.