can any one offer help

This is a long story, please take the time to read. our 4 year old daughter has been recently diagnosed with crohns. she was constipated for awhile and had very hard stools. she was lathargic and very run down, pale, and complaining of stomach pain. fevers and vomiting were a daily occurance. we took her to the ER and they ruled out appendicitis and lead poisoning. we took her to a peds GI specialist and was treated for the constipation with 255 grams of miralax in 64 oz. of gatorade. continues on daily miralax. they also took some blood work and found out she was iron deficiant annemic and lactose intollerant. she takes iron supplement and digestive advantage for lactose intolerance daily. endoscopy was performed shortly after where they found granulomas in her esophagus, a small hernia at the rim of her esophagus. said she had reflux and started her on prevacid. next she had barium swallow with small bowel follow through x-rays done. "abnormalities" were found there. next they performed colonoscopy and found granulomas in her large bowel. She was diagnosed with CD and at this point had a sed rate of 42. she started taking pentasa 500 mg 2x a day. sed went down to 32 in a month, increased pentasa to 3x a day. sed rate went to 28 in two weeks. vomiting continued so they added zantac for the reflux she had 2 good days then back to vomiting daily. labs rechecked and sed rate back up in 30's. started on entocort 6mg daily. vomiting stopped immediately but now getting strange rashes. first on cheek, then one on her stomach, and now her right elbow and knee for past 4 days and today on right butt cheek. Doctor admits she is a very difficult case and doesnt fit the textbook crohns patient but we really wnat to know if anyone out there has had similar experiences. We feel like we're all alone and things just don't add up.

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Your not alone.
by: Latrell

To the mother of the 4yr old daughter, I just want you to know that you're not alone. I was diagnosed with CD when I was 14, because it went undetected for 2yrs. I'm now 27yrs old and have been to the end and back with this disease, only to be told that I have the worste case every. I have been on every medication there is for CD only to find that my body has gotten use to them all, except for "Humira" which I'm currently on. What I've found is that everyone who has CD deals with it very differently. Just know that your daughter isn't alone and as long as you have time on your side better days are ahead. I would love to say much more but I don't have enough space. However, if you ever need advice or suggestions feel free to email me at latrellarrington@gmail.com.

Best of luck Latrell.
GREAT BOOK
by: Anonymous

THIS IS VERY IMPORTANT FOR YOUR DAUGHTER'S WELL BEING. PLEASE LOOK UP THE BOOK BY SHERRY BRESCIA TITLED "GREAT TASTE NO PAIN" IT IS ALL ABOUT PROPER FOOD COMBINATIONS FOR CROHNES. GIVE HER GLUTEN FREE PRODUCTS AND NO DAIRY. I DRINK RICE MILK BUT SHE MAY BE TOO YOUNG FOR THAT. CHECK AROUND. IF SHE IS FEELING REALLY SICK. MAKE HER A TALL GLASS OF WATER WITH A FRESHLY SQUEAZED LEMON ADDED TO THE WATER. BUY A GOOD CITRIS PRESS. LEMONS ARE EXTREMELY ALKALINE AND HELP TO TAKE THE ACIDITY AWAY. THIS IS WHAT REALLY CONTRIBUTES TO FLAREUPS IS ACID CREATING FOODS. THIS WONDERFUL BOOK WILL TEACH YOU ABOUT ALL THE GOOD FOODS AND THE ACID FORMING ONES. PLEASE GET THIS BOOK. GOOD LUCK AND GOD BLESS.
RESPONSE TO "SO..."
by: Anonymous

Thanks for your feedback. Our daughter was tested for celiac's and those tests were negative. Sorry to hear about your mom. Best of luck to you and your family.
So..
by: Anonymous

Through all of that, did anyone mention any other conditions? Some of it sounds like what my mom has gone through and she has celiac disease, and her GI says symptoms of crohns too.
Please Try Learn About Natural Treatments
by: Tara Ileso

I have had Crohn's for at least 20 years, but not as severe as your Angel. I have recently heard about NAET treatments and have started them. My familt doctor does not believe it will help, but I find most Western Medical professions don't believe in eastern medicine. I don't pretend to know much about either, but what I do know is that Western medicine sometimes seems to do more harm than good, especially when it comes to medicine and prevention of flare - ups ( diet and allergy Elimination) are not discussed.

I have a 3 1/2 year old girl. I have no idea what pain you are going through, but know that God Loves HER and You! Read all you can, try to talk to a NAET professional and any other person who may be able to help.

Also I MUST add! Don't ever be afraid to ask for a referral to another hospital with may have better technology or more expertise! The hospital you are in is likely not telling you what is available in your country ( where ever you are) at other facailities - ask.

God Bless! my e-mail taraileso09@yahoo.ca
Wish her well
by: Julie

Hi

I really feel for you all. Your tiny daughter should not be suffering in this way. Poor little thing. My son is 14 but since tiny has suffered various complaints relating to his stomach. Sickness, diarrhea, constipation, pains, mysterious rashes etc. He had been back and forth to the doctor but it was all regarded as "non specific". To cut a long story short, around 3 years ago, after a horrendous bout of sickness and pain saw him admitted to hospital with suspected appendicitis (sound familiar?), it was tentatively suggested he might have crohns. Unfortunately, he is too embarrassed to have the investigations carried out and refuses to have them done. He misses a lot of school and fun with his friends.

We just want our children to be well. My son was put on a high fiber diet for three weeks and his symptoms and pain increased dramatically, and so we learned that for him, too much fiber will exacerbate his symptoms.

Anyway, I hope your daughters treatment will allow her to manage the condition. It is good she has had an early diagnosis I guess.
Take care.

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