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04-25-2012, 11:06 PM   #1
Lilmamma
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Location: Palm Coast, Florida
New to the forum

My 10 year old daughter was diagnosed with Crohn's Disease yesterday.
Everything seems to be happening so quickly. Her GI called today to get us going in her GI clinic tomorrow. We're meeting with her team: GI, Nurse Practitioner, Nutritionist... and I think someone else. My mind sort of shut off for a bit because it's on overload.
I don't know what questions to ask the team. I'm just completely overwhelmed.
If someone can help set me on the right path, it would be greatly appreciated.
Thanks,
April
04-26-2012, 02:34 AM   #2
Sascot
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So sorry to hear about your daughter! It is really a hard thing to take in, but this is a great forum for advice and comfort!
Good luck with the GI appointment. My first one kinda was a blur. Not sure how they treat Crohn's over there but our first port of call was an 8 week liquid diet (yes it sounds scary but lots of the kids have done it). My son was fine on it and it helped without any meds for a few months. The great thing about it is that it has no side effects and you have the added bonus of your child getting all her nutrition (one less worry ).
If in doubt ask them for information leaflets on Crohn's, meds, etc. Also if they mention medication there are sub-forums on here where you can ask questions, get info, etc.
Good luck, let us know how you get on!
04-26-2012, 07:56 AM   #3
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Hi Lilmamma,

I hope it goes well at the GI doc today. It can be overwhelming in the beginning, so much to take in. Take a notebook and start to list your questions as they come to you so you don't forget to ask them...also take notes on medicines, foods, follow up appointments etc.
04-26-2012, 08:04 AM   #4
Tesscorm
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Hi Lilmamma,

Sorry you had to find your way here because of your daughter's diagnosis but as Sascot said, its a great place to find lots of info and a great group of parents for support!

My son's treatment was also the enteral nutrition (6 weeks no food, then maintenance dose with regular diet) and, so far, the formula alone has kept his crohns under control. Its not as commonly used in the US as it is in other countries, so you may need to be the one to ask regarding the treatment - may not be suggested by your GI. From what I've learned (but not an expert in any sense! ), it seems to work best if the crohns is located in the small intestine, so not necessarily a treatment option for everyone. If it is a treatment that may work for your daughter, it is free of all side effects and has a comparable success rate at inducing remission as do steroids. It can also be used together with medications to provide necessary nutrition and bowel rest. (Lots of info on EN on this subforum as well as in the Treatments forum.)

You may also want to ask about your daughter's vitamin levels as many crohns patients have difficulty absorbing all the vitamins/minerals they need.

It's a lot to take in at the beginning, emotionally and otherwise. I'm sure there will be other parents with more experience jumping in to offer advice and support! Feel free to ask any questions!

I hope you're daughter isn't feeling too poorly and that you get answers at your appointment.

Good luck!
__________________
Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
04-26-2012, 08:10 AM   #5
Tesscorm
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The Wiki section of the forum also has a post listing relevent questions for your GI. I've attached a link:

http://www.crohnsforum.com/wiki/Questions
04-26-2012, 10:43 AM   #6
AZMOM
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April - you have a lot to take in. Here's where I'd start until I could get some reading under my belt....

1. Where in the GI tract does she have disease?
2. How severe is it?
3. What immediate medications are we going to use to make her feel better?
4. Are there immediate changes you'd recommend for her diet?
5. If we do immediate medications, what is needed to keep her under control long term? Medication vs Enteral Nutrition?
6. Is there a pediatric support group at the hospital?
7. How often does she need labwork?
8. What signs and symptoms should you call the office for?

There's many more but that's a slow and steady start.

Julie
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Julie

Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
04-26-2012, 11:08 AM   #7
Twiggy930
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April

So sorry to hear your daughter has been diagnosed with Crohn's. My son is also 10 and was diagnosed in early February. You have already gotten great advice on questions to ask. One simple thing that I have found very helpful is I have a calendar that I mark everything on, like when he began/stopped medications, when the dosage of medications changed, when he had various notable symptoms, when he had blood drawn, when he had appointments, etc. I find it very useful to have this all written down in one place.

My son is currently doing a 6 week course of enteral nutrition, one more week to go. Definitely look into EN it has many benefits and isn't as hard as I thought it would be.

Good luck with your appointment and keep us posted on how you are all doing. It will get better.

__________________
Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
04-26-2012, 01:09 PM   #8
polly13
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Hi there and really sorry to hear about your daughters diagnosis. you have got some great advice here in relation to questions you need to ask at your GI appointment. For me the first few GI appointments were actually a blur as I couldn't take in all the information I was getting and was hugely overwhelmed by the whole thing. The first thing will be to get current symptoms under control and in our experience they start with least severe medications and work their up to the heavy duty stuff and hope something works along hte way.

I wish you the very best and if you feel overwhelmed and forgot half of what you want to ask you can always call the GI team and have a chat afterwards.
04-26-2012, 01:13 PM   #9
Jenn
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Welcome Lilmamma and so sorry to hear about your daughter. It is completely overwhelming. People have already posted great suggestions. Take a deep breath! start by learning about the types of disease and the various treatments/medications, check out the ccfa.org site. You and your doctors will be partners for a long time in keeping your daughter healthy. Glad you found the board, it's a lifesaver. <hug>
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Jennifer ~ son dx at age 8, Sep 2010
currently on Humira, Feb 2012+, MTX (15mg) Aug 2017+, folic acid
past use: 6mp for Sep 2010-Apr 2011 (not effective enough), then Remicade April 2011-Dec 2011 (built antibodies); additional 6MP Aug 2012-Sep 2013; Periactin for appetite Sep 2010-Sep 2013
other: Centrum chewable multi; calcium-vitD;
Derma-Smoothe for psoriasis rashes; Alrex, Zaditor eye drops for vernal conjunctivitis; history of asthma, ear infections
04-26-2012, 01:21 PM   #10
izzi'smom
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No additional advice, as you have already gotten some that is great...just a warm welcome!
The beginning can be SO overwhelming...tons of info, lots of indecision-hang in there, it *will* get better. (((HUGS)))
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Angie, mom to Izzi,10 Crohn's Colitis 1/11 prednisone, entyvio since 2015 Tried: Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.
04-26-2012, 01:34 PM   #11
Crohn's Mom
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Hi April and welcome !

I'm so glad you found the forum ~ and it's nice to see how much great advice you have gotten already!

As others have said, take a deep breath ! We all know how overwhelming it can be, and is in the beginning We are here for you, so ask, ask away ~ and remember, there is nothing too "gross" or "weird", and NEVER a stupid question !

Hang in there, it's all going to be ok

P.S. I am the Tracy that you friended on Facebook, so feel free to PM me anytime
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~T~
Mom to Gab (20)
DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
04-26-2012, 10:16 PM   #12
DustyKat
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Hi April and

I'm so sorry to hear about your daughter...... and sorry that I am late to your introduction. You have been given fab advice!

Since I am so late......how did your appointment go?

Dusty. xxx
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Mum of 2 kids with Crohn's.
04-27-2012, 09:25 AM   #13
Lilmamma
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Thank you all for the advice. I brought a notebook with questions to ask the GI. Then never even opened the darn thing. I completely forgot to ask as he was giving us tons of info and my brain sort of got full. lol
We know that she has Chron's Disease in her ileum and it appears the rest of her intestines and bowel are fine.
They are scheduling her for an MRI of her stomach area to make sure the rest of her organs aren't inflamed. Then they are going to do some sort of capsule study involving cameras.
They have started her on steroids daily. We have to get some blood work done and then they are going to start her on 6-MP.
We go back every 30 days for the foreseeable future.
04-27-2012, 09:35 AM   #14
Tesscorm
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It is a lot to take in all at once! I always take a list of questions and then, inevitabily, leave with some unanswered!

Hope only good news comes from the upcoming tests and that the steroids get her into remission quickly!
04-27-2012, 09:43 AM   #15
imaboveitall
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HEY there, another one at age ten...seems common on here. Violet was also ten when dx.
She uses formula feeds as adjunctive therapy and used as sole therapy for the first three years. She'll continue it until growth is done at age 16. Compromised nutrition is just not something I'm willing to entertain.
Her growth/development have been excellent due to the formula but it hasn't been sufficient to keep all inflammation away, though it has reduced its systemic effect.
Ok that's my EN sales pitch, it works so well for V I have to tell everyone

Beyond that, just some HUGS and understanding...this is a hard place for us mothers to be
__________________
VIOLET AGED 16

Current tx:
Pediasure PEPTIDE 1000 cals nightly via NG tube
Imuran 150mg
Humira


Failed and/or past tx:
Remicade
methotrexate
prednisone
Flagyl
Pentasa
atenolol
Florinef
cyproheptadine
Humira
04-27-2012, 10:05 AM   #16
Lilmamma
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He did mention the formula feeds. I think we're waiting on some blood tests to come back to check on vitamin levels and I have to email the nutritionist her food intake every week.
I have a 3 page printed sheet of blood work to have done today.
And I also have to have her TB test read.
04-27-2012, 04:20 PM   #17
DustyKat
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Thanks for the update hun!

Sounds like your doc is very thorough. The test with the capsule and camera is a Pillcam, she will swallow the capsule that contains a camera and that then allows to visualise the entire length of the small bowel.

Good luck and keep us posted.

Dusty. xxx
04-27-2012, 10:45 PM   #18
Mom2oneboy
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Hi and Welcome! I have a 10 yr old son who was diagnosed in Feb. It is all very overwhelming! This forum has been a life saver for me. There's so many wonderful people here with lots of great information that they are willing to share. You are not alone!! Learn as much as you can and take it one day at a time.
__________________
Shelley
11yr old son
dx Crohn's 2/2012
Currently on VSL #3
Started EN 4/2
Methotrexate 6/6/12
Remicade 09/30/12

Life is not about waiting for the storms to pass...It's about learning to dance in the rain.
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