Crohn's Disease Forum » Your Story » Daughter with CD

10-22-2012, 05:36 PM   #1
Waitingtoexhale's Avatar
Join Date: Oct 2012
Location: Towson, Maryland
Daughter with CD

am new to this forum and hoping to find some form of support to put my mind/worries at ease... My 8 year old daughter was diagnosed with CD in August and the news hit us hard. We have had 2 healthy kids all of our lives! I am constantly feeling guilty, that it is my fault...
I am frustrated because I am in the middle of obtaining help from both Westernized medicine and Wholistic medicine. I am trying to following the regimens but frustrated because when we took her back for bloodwork/follow-up the results were getting worse! Hemoglobin/Hematocrit levels decreasing, weight is decreasing and the Doctor says she needs more calories and protein in her diet.
The wholistic doctor said absolutely no steroids and no dairy, etc...

Our 8 year old does not know she has Crohn's (we have not told her yet), however she obviously knows that "something" is going on with her... It is hard for us because she is already feeling like she is "different"... I constantly find myself crying and feeling bad that she is so tiny and I am terrified that what we are doing to try to make her better is not working and that she will end up with a colostomy or something... She will go for an MRE on Thursday and some Xrays to assess her growth development since she has lost so much weight.... I just wish that there was a group/support group for children with Crohn's... So she won't feel so isolated and alone...
I am looking to find some peace of mind... Soon....
10-22-2012, 05:49 PM   #2
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Pointy_ears's Avatar
Join Date: Sep 2012
Location: Birmingham, United Kingdom
Hi, I saw your post and just wanted to offer my support! Crohns is a terrible illness and I'm sorry that your daughter has it and you and your family have been affected by it.

I don't know much about the medical side but let me assure you this is not your fault! There is no 100% proven genetic link in Crohns it's just some people have a predisposition to it and it could happen to anyone.

There's a lot of good advice here and we have a wonderful group of parents on this forum who are helping there kids through treatment for crohns who will no doubt weigh in with there advice and support.

I can assure you Crohns is hard but there is help and there are wonderful treatments out there it's just a case of finding the right one for your daughter.

I hope both you and your daughter feel better soon and that you find the advice and support your looking for!
surgery:2012 hemicolectomy, repair of fistula to the bladder, draining of abscesses surrounding bowel supportive tissues.
Ileostomy:"Junior" (Reversed April 2013)
Meds: Azathioprine

"It's life Jim but not as we know it!"
10-22-2012, 05:49 PM   #3
SarahBear's Avatar
Join Date: May 2012
Location: Charleston, West Virginia

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Welcome to the forum! I'm really sorry to hear what a tough time you and your daughter are going through.

I can assure you that her illness is absolutely not your fault! It happens, and we don't know why, but I'm fairly positive our mothers had nothing to do with it!

Are you planning to follow the advice from both doctors? Do they not sometimes offer conflicting advice? Is your daughter taking any medications or supplements?

I won't judge on this, as I really don't know what the best course of action is (I'm sure it depends a lot on your unique situation), but are you sure that not telling her is the best option? It might help her to have an explanation for what is happening to her.

Please keep us updated on how her treatment goes! Wishing you both the best.
10-22-2012, 06:15 PM   #4
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LittleChloe's Avatar
Join Date: Oct 2011
Location: Ohio

My Support Groups:
What is the plan of action from your medical docs and your holistic doctor? We chose a more holistic approach for our daughter and it has worked well. I will tell you two things though 1. Sometimes you need the things you hate (steroids) temporarily in order to get things under control. Natural anti inflammatories are fantastic but they work slower and your daughter needs to absorb nutrients right now. You can always switch over, we did. 2. It's going to get better. We all sobbed when we got the bad news and looked at our skinny little kids. I still cry if I dwell on it. I'm so sorry this has happened to your girl. You will find what works for you though and it's not likely that she will end up with a colostomy. Look through the subforums on here. Specifically the one on enteral nutrition and low dose naltrexone. They might be what you're looking for. It also helps to keep a journal of symptoms and medications. Hang in there, you found the right place
10-22-2012, 09:48 PM   #5
David's Avatar
Join Date: Feb 2006
Location: Naples, Florida
Greetings and welcome to the community. I'm so sorry to hear about your daughter. I can't imagine how hard that must be. My heart goes out to your entire family.


I see that you already found our Parents of Kids with IBD section. That's good as you're in VERY GOOD hands there. Stay connected with those fine folks, they're worth their weight in gold. Diamond encrusted, platinum plated gold.

All my best to you.
It's good to be back
10-22-2012, 11:20 PM   #6
Forum Monitor
Join Date: Sep 2012
Location: Los Angeles
Welcome. I hope your little girl begins feeling well and gaining weight very soon. I would encourage you to begin giving your daughter some information about what is going on with her as soon as you are ready. She already knows something is "wrong" and sometimes our fantasies can be worse than the reality. She may be sad, but also relieved, to get a name for what is "wrong". I believe, also, that CCFA has resources for kids so that they can understand things at their level and learn that they are not alone.

Good luck to you!

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