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03-30-2013, 02:44 PM   #1
Worriedmom2
 
Join Date: Mar 2013
Location: Ottawa, Ontario
I am scare to death

I know either I have IBD or IBS. LAST 30 years I have it. I came back from death time to time. First time when the doctor told my mother (30 years ago, in a third world country) there were no treatment for me. Just Pray . Only God can cure me. We submitted ourselves to God and relax. My mom gave me liquid diet almost one year. I became a skeleton. Then slowly I became human again!! Fortunately, 30 year ago, in a third world, there were no Western treatments for my disease. I had to follow my mother's natural diet and pray. Nothing else. I survive with a very healthy body. It comes once in a year, bits me up, puts me in the bed for a day or two (usually it happens when I am emotionally distrub or some specific food I eat). Otherwise I am good in health. I never go to the doctor for that. Because I count it as a blessing compair to one year non stop suffering.

However, now the case is different. Now it's not me but my daughter and she is diagnosed with Crohn disease.

After reserching the modern medicine of Crohn disease, I am terrified. I feel my mother was the best doctor for me. I am shocked and confused about treatment. I don't know what to do. Following my mother's footsteps or dragging my daughter into expermental modern medicine !!!!
03-30-2013, 04:41 PM   #2
parentnj
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Join Date: Dec 2012
Location: Hillsborough, New Jersey

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Hi worriedmom and welcome to the forum. The treatments today are not experimental, and most have a fairly well known track record. Ho old is your daughter? Our son was 13 when DX'd. The younger the child the more important it is to get the disease under control. A liquid diet (Enteral Nutrition) is actually a well known modern treatment path to get the disease under control and in remission. With the correct liquid nutrition course and supplements, children gain weight and the disease often goes into remission. Most Pediatric GIs are familiar with EN. The problem is keeping the disease in remission once you decide to introduce food again. There are many different treatments and medicines ... you just need to find one that is effective for your child. A good doctor will listen to your concerns and work with you on a course of treatment. I hope your daughter feels better soon and finds long term remission.
__________________
Son Alec 13yrs old - DX 11/2012
Remicade
Methotrexate 12.5 MG Oral & Zofran weekly
Folic Acid Daily
2000 IU Vitamin D Daily
1000 IU B-12 Daily
One A Day for Athletes

Failed - Pentasa
03-30-2013, 09:28 PM   #3
CarolinAlaska
Holding It Together
 
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Join Date: Jan 2013
Location: North Central, Illinois

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Hi WM2,

I'm sorry you have to face this ugly monster again. I think you'll find it harder facing it in your child, I'm guessing. Fortunately now you are in a place where there are more options than what you had then. You can still pray, and God can still help . He can cure her, or He can take you on another path of His choosing, but He will be there with you all the way if you invite Him to go with you in this.
__________________
Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
03-31-2013, 05:31 PM   #4
Farmwife
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Join Date: Apr 2012
Location: Michigan

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After reserching the modern medicine of Crohn disease, I am terrified. I feel my mother was the best doctor for me. I am shocked and confused about treatment. I don't know what to do. Following my mother's footsteps or dragging my daughter into expermental modern medicine !!!!

That's a good place to start. What are her options. Ask questions that's what were here for. Knowing why these meds do what they do, MIGHT make it less scary. We've all been where you are. HUGS
__________________
I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
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