Parents of 6 year old Crohn's patient...in need of support!

I am the mother of a 6 year old possible Crohn's patient. We started this journey July of 2011. The symptoms started slow, she wouldn't eat then the nightly interruptions came. Soon she was throwing up and having diarrhea at the same time. I frantically pleaded with her pediatrician to give us a GI referral. Once there she gave blood, and had the blood test to test for genetic and inflammatory markers. She had them all, and the results of the test if the Crohn's were left untreated the outcome was not good. So, we opted for conservative treatment methods. We used allergy medications with anti-inflammatory agents. It worked for short time, she gained 15 pounds in 2 months. She had been 29 pounds since she was 3 with little to no growth. I thought we can get by on this at least until she is a teenager, right? No, our worst fear came true about 2 months ago. All the medication stopped working and now she is down weight again and living off broths. Now we are moving to more aggressive treatment, steroids. I never thought I would be faced with the decision to give or not to give Prednisone to my 6 year old child. Damned if I do, Damned if I don't! I feel, frustrated, confused, mad, angry, sad, and scared. All these emotions but I have to be strong for her. I need some guidance from someone who knows what we are all going through. My husband and I feel alone in this, and I know we are not alone it just feels that way. Our families don't understand what we are going through.

http://www.crohnsforum.com/forumdisplay.php?f=49
The link above is to the parents forum
Lots of moms in the same boat- a few dads too.
My son was dx at age 7.
Have you asked your Gi about enternal nutrition EEN ?
Basically your child goes no foods for about 6-8 weeks it is as effective as pred in children
No side effects only nutrition and weight gain.
There are numerous papers on Ibd and EEN in the ped research section here
http://www.naspghan.org/user-assets...nteral_Nutrition_for_the_Control_of.29[1].pdf

http://www.crohnsforum.com/showthread.php?t=43002

En is a good start to avoid pred but not good long term.
Your child will still need a maintenance med which pred is not .
Is she on a 5-ASA or 6-mp?
5-ASA are harmless but not very useful in crohn's patients .
6-mp is an immunosuppressant has a long list of possible side effects all scary but rare.
Better than Tylenol in my book since it has scary rare side effects but at least with 6-mp the doc is constantly looking for even a minor hint of a side effect.
Tylenol you are left to your own devices.

I will I could say it was easy but it is hard.
Finding the right med makes all the difference
Keeping your child on even a half dose of EN evens the scales out so they can continue to grow even with the evil disease .
We use peptamen jr for DS.
It is peptide based so it only needs a few inches of healthy intestine to absorb it.

Here is a link
http://www.nestlenutritionstore.com...r-with-prebio-1?rank=4&v1=rank&asc=1&catpath=

Your GI can give you a script to be sent to the durable medical equipment company
Which may cover the cost through your insurances medical supplies clause

Thank you so much for the advice and all the support. This forum has already put us both at ease. To know that we can come here and there are so many parents just like us. We are so new to this that when the doctor to speaks to us, we both feel like they are trying to tell us something we are not sure what it is though! Maybe we are in denial, I think that is what is mostly.

I would love to keep her off Prednisone, but the doctor wants to try it to determine if this is actually inflammation. My family tells me how bad the side effects are, and I know they are trying to help. They are making this process so much harder!!! How do you deal with that part of this process?

Hi TGM and welcome

MLP has already given you some great advice.
Hopefully you will come over to the Parents Forum
and join us there ~ lots of wonderful moms and dads in the same boat.

Has your daughter had any other tests besides the bloods ? Colonoscopy, upper endoscopy, CT scan, MRE , Upper Gi ?
All of these, and some others, can help in a definite diagnosis for Crohn's.

We all love to hate the dreaded Prednisone, but it is great in reducing inflammation and kicking one into remission. However, as MLP said, it can't be the only thing used, she will need a maintenance med for long term.
Personally, I would push for scopes with biopsies to be done prior to starting prednisone as to not mask anything.

big hugs to you and best of luck !
Please feel free to ask any questions, there's nothing too small :hugs:

I am sorry to hear about your child. My daughter was diagnosed when she was seventeen with UC and regardless of age you want to protect them. I know what you are going through and I can only say that you can and will find a way to be strong for your child and yourself. You are not alone and we all have to support each other to get through the difficult times.

Hello and welcome. I'm sorry to hear about your daughter. I can understand not wanting to put her on pred. Talk to your doctor, there are a few alternatives. I agree with the other posters, check out our parenting forum. There are lots of links and info and you will receive lots of support.
I also understand your feelings. My daughter was 8 when she was diagnosed and I felt all those feelings. My family had never dealt with (or even heard about) IBD before my daughters diagnosis. It was all new to us too and really, 3 years later I still have SO much to learn. (((((hugs))))) and I hope your daughter is feeling better real soon.

We actually had the scopes with biopsies last year, they found some rare eosinophils in her esophagus which prompted the allergy meds. We had the Promeathis test done the day after a bad flare up, so the doctors are pretty sure that test was accurate with her inflammation markers that are present with Crohn's being highly elevated. The Periacton they prescribed worked for a short time and then we added singular. That did not last long, by November of 2012 she started complaining more and more with her stomach. Her teacher sent home notes about her disrupting class and going to the bathroom frequently. I tried to monitor her diet, but by late December she stopped eating again. She lost about 5 pounds and is so tired. The appointment with the doctor on Friday was the serious talk about more aggressive treatment. They want to start with Pred right now and when the Floroscopy comes back on Tuesday they will decide on what additional medication to put her on. So we have been on a year long journey to find out the cause of her pain. Thankfully with this flare up we have had only one night of consistent vomiting. The diarrhea has come and gone, but it has been nothing like last years flare up.

The links that was given here were very helpful. I have so much to learn about this, but I am comforted with all your words of encouragement and support.

I am learning to use the site, so please give me directions on how to join the parents forum.

TGM4AU said:

I am learning to use the site, so please give me directions on how to join the parents forum.

Click to expand...

Go to parents of kids with IBD .... left hand side at the top of the page you'll see a blue box that says new thread...go from there

Eosinophils can be caused by Egids.
EoE being one as well as EGE or EC
Periactin will not fix it.

There are a few main Hospitals for egids
Cchmc - Cincy
Chop
And national Jewish - Denver
You need to get her records and biopsies sent out for a second review
Treatment is similAr to Ibd
But different
Please read
http://apfed.org/drupal/drupal/what_are_egids

And here
http://community.kidswithfoodallergies.org/displayForum/forum/eosinophilic_disorders

And this
http://apfed.org/drupal/drupal/sites/default/files/2011_CR_update_summary_final.pdf



Good luck