My daughter has Crohn's

[skyhighrocks]

Hi all

Just happened upon this forum today and decided to register and maybe spread our story to you.

My daughter was diagnosed with Crohn's at the age of 7. She's almost 10 now and it's been tough at times and manageable at others. She is awesome about the whole thing...stronger than I could ever be. We recently put her on a gluten/dairy free diet to see if it helps keep the inflammation down. She was on 6mp but had to be taken off about a month ago because it started messing with her liver.

As a father, it's the hardest thing I've ever had to deal with. I'm a musician and instead of doing nothing, I decided to try to help in a small way. I'm trying to record a solo album through pledges. When complete, 100% of the net sales proceeds will be donated to Hasbro Children's Hospital (where my daughter is treated). I have to reach a goal amount in order for this to happen. If I happen to go over goal, I will donate all of that too. In order to record, pledge money will be used but I plan to stay well under recording budget. If I'm able to do that, that money will also be donated.

I'm hoping to be able to post my pledge page here soon, with the hopes that some of you can spread the word. I need to make this happen.

All monies donated will go towards research to help find a cure for this terrible disease. I wish you all the best of luck with your families. Thanks for reading...

 

[Farmwife]

Sorry to hear about your girl. Our children always amaze us on what they can take. I think we parents can take a lesson or two from them on courage.

Glad to hear that you've found away to show your support for the cause. I hope your daughter knows what a good dad she has to try to help her and others out anyway he can.

Farmwife

 

[skyhighrocks]

Thanks for the kind words and best wishes to you as well. You're right...kids are amazing. I learn a lot from her.

 

[Astrid]

Welcome. I am sorry your daughter has Crohn's but glad she handles it well.

 

[skyhighrocks]

Thanks Astrid

 

[Sascot]

Just wanted to pop on and say welcome. This forum is a sanity saver! Hope your daughter does well on the gluten free diet. Has she ever had the EN (I'm sure others will pop on and recommend it). My son had exclusive EN for 8 weeks which healed all the inflammation and allowed us a few months med free. His original symptoms of stomach pain have never come back yet!

 

[skyhighrocks]

Sorry for my ignorance...but what is EN? My daughter doesn't really have stomach pain anymore...we're just trying to find the right balance of food and meds to keep her on a good path.

 

[Tesscorm]

Hi and welcome to the forum!

EN (enteral nutrition) is a treatment that is often used to induce remission (although it is not as commonly used in the US as it is elsewhere). It has comparable success rates at inducing remission as steroids but no side effects at all! It is a liquid only diet that provides all necessary nutrition, has anti-inflammatory properties and provides bowel rest. The 'exclusive' period (formula only, no food) usually lasts a number of weeks (6 for my son) and then food is gradually reintroduced. This is often used in combination with meds to initially induce remission and to allow the medication to begin to work. In my son's case, he has continued on 'maintenance' EN (1/2 dose of formula and regular diet) in the hopes of maintaining remission med-free. It has 'controlled' his symptoms, however, we are looking at adding meds as there continues to be inflammation. (EN is not as successful at maintaining remission as are meds.) There is lots of info on EN in the Enteral Nutrition subforum under Treatment; as well there is a thread Kids on EN with lots of info.

EN is sometimes also used simply to provide nutrition - formula is added to regular diet and/or meds to assist in weight gain, etc. Also, EN can be ingested either orally or through naso-gastric tube.

Hope that helps

I hope your daughter isn't feeling too badly right now :ghug: and good luck with your album!!

 

[DustyKat]

Hi skyhighrocks and :welcome:

I'm so sorry to hear about your daughter...:hug:...and we certainly understand the heartbreak and sorrow you feel. Your daughter sounds wonderful and you must be so very proud her! She is also a very lucky young lady to have such kind and compassionate father as you.

It is fabulous what you are setting out to do for her and I certainly don't wish to sound like the fun police but when the time does come to post a pledge page I'm afraid there are forum rules that need adhered to...

*The sale of items and services are not allowed in threads, posts, signatures, or private messages. Requests for donations are not allowed in threads and posts, however you are allowed to have a short note and link in your signature about your legitimate charity. We realize this may seem uncaring but that is far from the truth. We feel such threads and posts could interfere with our cardinal rule that this is a support forum first and foremost.

...I hope this doesn't deter you from the forum as it would be fab if you stayed around so we can get to know you better. I have a link in my signature now so you will be able to see the sort of thing is allowed.

Good luck and welcome aboard!

Dusty. xxx