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01-06-2013, 02:20 PM   #1
mom2girls
 
Join Date: Sep 2012
Location: Waddell, Arizona
Doing good on EN!

After the initial shock of my 15 year old being diagnosed with crohns I went into denial. No...she cant have crohns...a healthy child doesnt just wake up a sick child for no reason. SHe has a great Summer with no issues. Then when school started so did her stress as she has severe self image issues. I got her into counsling and on anti depressants which really helped a lot! But come Thanksgiving and all the food and it was just too much for her. We ended back in Cardens Childrens Hospital the day after Thanksgiving for 5 days. My DD was given a choice...3 months of steroids (which would have really hurt her self image issues as it makes her puff up) or...3 months of EN. She chose EN. It was a rough start in the hospital as they wouldnt let her leave till she drank 64 oz (her amount each day) I was online ASAP doing research in the hospital. We chose Elecare Jr Vanilla flavor...but it was way too sweet for her...and the plain flavor was disgusting! So when we finally got home I started experimenting...and found if we did half and half (plain and vanilla) it wasnt so bad. However after a couple weeks its was getting hard to swallow taste wise. More research...I found the Got Milk Flavor Straws...gluten free...sugar free...many flavors...and her GI approved the use of them! Now she can have chocolate, strawberry, cinamon roll...and her favorite Capacinno. SHe sometimes uses 3...chocolate, cinaomon roll, a capacinno for a starbucks knock off! Although she looks much thinner she has maintained her weight. And after one and a half months she feels great! Her personality has even changed...I have my girl back! 2 days ago she started 6MP. So far seems to be going very well. I am so nervous having her on what our pharmacist called a "TOXIC DRUG" but if it keeps her out of the hospital we will try. Her GI said she wishes more parents would go the EN path instead of steroids. It has not been easy...especially since we did it through Christmas...which meant no Holiday meals or cookies and treats...but at least this Christmas we were home and not at the hospital like last Christmas. I worry daily about my DD...but now I look at my 4 year old and I fear for her. Will I be going down this road again in 10 years with her? Im terrified at that thought. Any one have multiple kids with IBD? Or without? My advice...push your GI towards EN...I hear some dont approve it...but we have done the steroids...I MUCH prefer this route...and so does my DD! We go in a few weeks for a MRI to see how she is progressing...if it looks good she will get to get off early! May God bless all our kids and help them heal!
01-06-2013, 02:50 PM   #2
Earnellzwifey
Senior Member
 
Earnellzwifey's Avatar
 
Join Date: Sep 2012
Location: Aberdeen, Mississippi
I am so glad that your daughter is feeling better I hope that she gets to get off of EN early and that she is in remission soon.
__________________
Dx 8/31/ 2012 w/ CD
taking:
Remicade,Librax,Lomotil,Prednisone,Probiotic,
Iron,multi-vitamin, B12 injections, magic mouthwash,
Zofran.

32 medical conditions and counting. 22 pills a day with daily blood sugar testing and urinary cathing.

If you live in the loo , because you always gotta poo , then this is the place for you.
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