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Kathy287 05-16-2006 07:45 AM

daughter undiagnosed, please help
My 16 year old daughter had mono Christmas 2004, with this she had enlarged spleen and liver. They said this was from the mono. She had pain in her stomach ever since then. I called the doctor, and he would say it was just from the mono. Finally, after about 9 months, they decided to do some blood work. They found that her sed rate was high. Every time they check it, it is anywhere from double to quadruple what it should be. Her pain is all over her stomach, it moves around. It is sometimes sharp and sometimes crampy. She has worse pain when you press on the area that is hurting at the time. She hurts every day! They have done x-rays, ultrasounds, catscans, and the latest was a colonoscopy a week ago. They have found nothing. They have tried treating IBS, the meds make her worse. She doesn't have symptoms of IBS, but the doctor keeps saying he thinks that is what it is. They put her on a low fat, high fiber diet-the high fiber makes it worse. They took her off of soda, caffeine, juice, high fat- that didn't do anything. They took her off of gluten(wheat, rye, oats, barley)-that did nothing. When they did the colonoscopy, they did biopsies, we are waiting for those results, but the doctor doesn't expect to find anything.
I feel so helpless!!!! My daughter is in pain and I can't help her. She is so pleasant, she doesn't even tell me about it anymore. I will ask her how she felt today and she will just say the same. Her grades have dropped because she has had to miss so much school. She tries to keep up, she has a job also and tries not to miss that. She had to cancel going on a trip overseas that she had been saving for for a long time. This has just totally changed her life. We just want to know what we are dealing with. I just can't believe that it is IBS, she doesn't have the symptoms of IBS other than stomach pain.
Does anyone else have any similar experiences? Any advice? Please!!!!! We are thinking of trying to get a second opinion, this has been going on for a year and a half.
Thank you for taking the time and reading this.
Lord Bless,
Kathy(mother of Amanda)

Kathy287 05-16-2006 08:34 AM

Re: daughter undiagnosed, please help
we have a very good friend who is very "in" to natural cures. We tried lots of things when the doctors were not listening to us, including Noni. Unfortunately, nothing has helped.
I have just been doing more research on the sed rate, and unfortunately I am only finding bad news. I am really getting scared. All of the information I have found says that the elevation is caused from either an infection, and autoimmune disease, or cancer. We know she doesn't have an infection, she has had so many blood tests done, and they have shown no infection, so that leaves autoimmune disease or cancer. I want to know what we are dealing with, but I don't want either of these. We see the GI doctor tomorrow, I think I am going to have to talk with my daughter tonight because I am going to lay my cards on the table with the doctor tomorrow. I am really tired of dragging our feet. If it is something really serious, we need all the time we can get to deal with it.
Lord Bless,

Sharon76 05-16-2006 09:13 AM

Re: daughter undiagnosed, please help
Hi Kathy

I was in the exact same boat as your daughter with myself. My sed rate was sky high, excruiating pain around my stomach and i had endless tests.

Eventually they found out i have Crohn's disease. The only test that confirmed it was a barium meal of the small bowel, this was because in my situation that is where the Crohn's is. It is nowhere else in my body. It took 10 months for me to get this diagnosis.

Please don't worry yourself too much, i know it's hard but has crohn's been ruled yet? Also when you said they put her on a high fibre diet and it made her worse, that is what happened to me. So instead i switched to a low fibre diet and the pain eased. The reason why is because during a flare up of crohn's the body cannot handle high fibre food as it can't absorb it through the small bowel.

Try switching her to a low fibre diet and small portion size meals, staying away from most veg until it calms down. The reason for this is because again the small bowel cannot absorb the nutrients from teh veg and it causes pain.

I hope this helps you and your daughter, please let me know how you get on.

Kathy287 05-16-2006 06:31 PM

Re: daughter undiagnosed, please help
yes, they had discussed Crohn's disease, but they said it isn't because the colonoscopy she just had didn't show it. She even had pain on the two days that she wasn't allowed to eat solid foods prior to her colonoscopy. She was allowed to have clear liquids, jello, and broth. Even on that, she had pain, we just don't understand it. Well, my husband is now going to go with us to the GI doctor tomorrow, and we are going to tell him the information that we have, and we want to know what he can tell us. We want more tests run, or we want to go to another doctor.
Lord Bless,

Sharon76 05-17-2006 12:06 AM

Re: daughter undiagnosed, please help
Kathy that is so silly what the doctor said regarding the colonoscopy. I think that is silly for the doctor to rule it out due to that reason.

All the tests of my large bowel showed up normal because this wasn't where the Crohn's was. Just because it hasn't showed up there doesn't mean she hasnt got it. Crohn's can affect anywhere from the mouth all the way through to the latge intestine. A person can have it in their mouth but be clear everywhere else, vice versa. With me being so ill and at the point of anorexic, i thought i was dying due to my body wasting away and my kidneys not working properly, also my liver was messing up because of the amount of inflammation in my body, i ended up in hospital for 9 days on IV.

PLease please try and get the barium meals done. It sounds exactly like what i went through. And like i sad they missed my diagnosis because i didnt have it in my large bowel. Please push for the Bariums, personally i feel you will all get some more answers with the bariums.

I really hope it is sorted soon, it's horrible being like that, ive been through it and i wish a speedy diagnosis for your daughter.

Good luck and my thoughts are with you.

Kathy287 05-17-2006 06:06 PM

Re: daughter undiagnosed, please help
We had our GI appointment this morning, and we were ready to tell the doctor how we felt...well he started out telling us they found something on the one biopsy. In the ileum they found inflamation so they said she has ileitis. They "think" it is caused by the beginning stages of crohn's disease in the small intestine and/or ileum. They are sending some blood to California to check for an antibody that most people with crohn's have. They have put her on Pentasa to see if that will help. He said that usually, patients with crohn's have to take meds all their life, but he felt that since we may have caught it very early, if the med helps, we could try taking her off of it in 6-12 months to see how she does. Wow, what a great answer to prayer for us!!! Sharon, if you could please tell me about what you take, and how things progressed for you after you started meds. If anyone is taking Pentasa and would like to share anything, I would appreciate it.
Lord Bless,

Sharon76 05-18-2006 12:12 AM

Re: daughter undiagnosed, please help
Hi Kathy

That is great news!!!!! They have found something and now treatment can start. Not good that it is a disease, but at least you all know :)

She may not need to be on meds for the rest of her life. I started on meds 4 weeks ago, at the moment i am in the process of reducing my steroids but staying on the other lot of meds. You will probably find that adjusting her diet will help.

HAving a low fibre diet and minimal fruit and veg will help to ease the flare up, once it is under control slowly re introduce the fibre and fruit and veg. This is what i done and it helped me. Also many Crohn's sufferers have problems with lactose, which means alot of dairy products. So it could be worth her staying away from these for a while until it calms down.

During my flare up, once the pain was under control i managed to eat soup, chicken and fish. Not alot but some good nutrients in the food.

The medication i am on is prednisolone (steroids) and mesalazine (asacol). The steroids helps to reduce the inflammation in the small bowel and ease the pain, these are very good meds as they work quickly, but can have side effects. The mesalazine is to help keep it under control, again very good but at the moment with me they are not working on their own, i need the steroids as well. Since i have been on my meds i have been a completely different person, pain has eased alot, able to eat, gained some of my weight back, more energy and tons better in myself. As soon as the meds get into your daughters system she will feel alot better. It is surprising how well they work for alot of people. :) Also she has it in the same place as distal ileum and the small bowel.

I understand completely what she is going through, i am 30 with 3 children and i couldnt care for them when i was at my worse point, my husband had to have time off work to care for them, and even got to the point where he had to bathe me becasue i was too ill to do it myself. It wasn't nice, and now hopefully your daughter will start feeling better :) :)

The Pentasa that your daughter is on is the same as mesalazine and works the same way, she could do with going on the steroids as well to give her body a boost to help get it under control. The pentasa breaks down in the system alot earlier than some of the other meds, therefore the pentasa is usually given to people who have crohns in the small bowel. Once it is under control the doctor will probably start to reduce her doseage and see how she gets on with that.

I am really pleased for you all Kathy and my thoughts go out to you and your daughter.

I hope this helps, if i can help anymore please let me know :)

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