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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Have questions and looking for your opinion


10-04-2011, 12:46 PM   #1
Savannah's mom
 
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have questions and looking for your opinion

My 9 year old daughter Savannah has been having stomach issues for years but this last December is when it really started getting bad since then, she has had countless test and still no diagnoses.
Blood test were normal most of the time...
Stool samples- blood, calprotectin, and alpha-1-antitrypsin found
Sitz-Marks motility test- dr said results "ok not great but ok"
Egd and Colonoscopy- was not able to complete colonoscopy because of spasms was not able to continue into the Ascending colon. They did take 50 biopsies and all but 5 showed some type of imflammatory markers.
Upper Gi with Small Bowel Follow Thru and barium- The radiologist basically came out and told me he thought she had crohn's but when the GI called me back he said the x-rays were normal.
Savannah started taken Pentasa Sept 8, 2011 she takes 2
I think she is doing better in regards to eating and has actually gained a pound. She still is experiencing stomach pain and joint pains both of which come and go. I still occasionally hear "I feel weak and shaky" but not nearly as often as before the Pentasa.
She has missed alot of school because of unexplained low grade fever 100-101 with not really any other symptoms except the occasional my tummy or butt hurts.
One of my best friends for the past 40 years has Crohn's and she keeps telling me to stay away from steriods of any kind she said she thinks they did more damage to her than the actual disease.
Anyways, without a diagnoses I know my child is sick, but is giving her medicines without actually having a cause a good idea? and what medicines should I stay away from?
We go back to the Gi Doc Friday and input would be greatly appreciated.
10-04-2011, 12:48 PM   #2
Savannah's mom
 
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got distracted and should have read this post again......
Savannah is currently taken Pentasa X 2 250 mg 3 times daily
10-04-2011, 12:58 PM   #3
Crohn's 35
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Hi there, welcome to the forum... your friend is right, avoid prednisone if at all possible. Pentasa may not be strong enough. There are no really "safe" drugs as we all react differently towards them, depends on how act she is. Entocort is a steroid base but does not have the near the side effects. Also there are the biologics, from my experiences Humira is the mildest. It does help if we knew what country you are in and someone can chime in to help you more. Xrays are not the best way for catching the disease, been there done that. Has she had a colonocopy again recently, because if they still can't get the inflammation down , she could end up with a bowel or partical bowel obstruction. They need to get that far. Most common places for Crohns is in the Ileum.

If there is no diagnosis for crohns, and she does have it , she could have alot of pain. I know you are worried and I would be too if it where my child. Kids don't lie about pain. And the pain is real. Keep us posted, let us know what is going on, hugs to you too!
10-04-2011, 01:23 PM   #4
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We live in the United States, Savannah is being seen by a Pediatric GI specialist at Texas Children's Hospital in Houston, Texas.... The doctor actually called us in for this appointment we weren't originally to go see him for another month. I am hoping he wants to discuss either another colonoscopy or maybe even the pill cam. I am hoping the Pentasa is addressing some of the imflammation so if they do decide on another colonoscopy maybe her bowels won't be so inflammed and iritated that they would be able to complete the colonoscopy.
The reason I asked about the medicine is because he said we are going to start with Pentasa but if that doesn't help there are a couple of other medicaines we can add to it. From everything I have read the last several months Predisone is the next step alot of times and I am completely unsure about treating or masking something without truly knowing what is going on. Should I insist on another colonoscopy before I let them treat it, it being whatever "it" is? How common is it for docs to prescribe predinisone to an undiagnosed person? ( I just want to be educated when we go in Friday)
I asked the gi doc straight out " will the xray help diagnose Crohn's?" and he said no but it would probably show a fistula or other obstructions.
Also, know I want what is best for Savannah and I don't want to keep meds from her that she needs just not sure about any of this. Her dad is no help he doesn't really want to talk about it and just says let the doctors do their job.....
10-04-2011, 03:02 PM   #5
David
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I would be concerned about taking the prednisone without a firm diagnosis as well unless of course the doctors felt something acute was going on that needed prompt treatment.

The pillcam can be taken by children so I'd be curious what your doctor thought about that.

If it was my kid, I'd also request that her vitamin B12 and Magnesium levels be checked as well, if they haven't already.
10-04-2011, 03:21 PM   #6
Cat-a-Tonic
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Savannah's mom, I'm with Pen and David - I would be wary of prednisone. Speaking as an undiagnosed adult, I have been on prednisone twice, but it was for very short amounts of time at very low doses (10 mg per day for 5 days, to see if it worked for me, and then later I was at 20 mg per day for 6 days when my GI changed his mind and decided to pull me off of it so that I could undergo more tests). You're absolutely right, it can mask things that would otherwise be seen on tests, so if your daughter is going to have more tests then she shouldn't be on pred. And as my GI has said, it is risky to put an undiagnosed person on such a drug. The side effects alone are sometimes not worth it!

You've mentioned colonoscopy and upper endoscopy and small bowel follow-thru - has she had any other tests? An imaging test like CT scan or MRI might be a good idea, and as David mentioned the pill cam is a very good test to have. It can see the entire small intestine (the only real downside is that it cannot take biopsies, and if there's any narrowing there is a chance that it could get stuck). Good luck on Friday, I hope you're able to get some answers out of that GI!
10-04-2011, 03:29 PM   #7
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Just a note to add, pill cams are risky if they have alot of inflammation, it could get stuck and that requires surgery in most cases to get it out and from others I have read it doesnt always show. If a scope can't get through chances are neither will a pill cam. Just from what I have learned from the forum.
10-07-2011, 05:29 PM   #8
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Finally home from the doctor and exhausted! the short of it he told me without a doubt at this time between all the test he has done Savannah does not have Crohn's but we may be watching it develop, at this time he is going to start treating her as she does. Going to continue the Pentasa but add Entocort to her meds and see how she does I am to call him in two weeks. He did start with the Prednisone I just told him I am not ready for Prednisone... You knw the last thing he said to me today is Don;t rule out Prednisone it is a wonderful drug.. He assured me that the Endocort is absorbed differently and has less side effects...?????
10-07-2011, 05:32 PM   #9
David
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I know you're exhausted so I'm sorry to throw something else at you, but as it has about the same remission rates as Prednisone, you may want to take a look at Enteral Nutrition.

Take care
10-07-2011, 05:34 PM   #10
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Throw it at me thats why I posted I am completely new to all of this and its so nice to have input and not be alone! Thanks David!!!
10-07-2011, 05:55 PM   #11
Crohn's 35
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Yes, Entocort does have way less side effects, and low doses are better. Yes Pred is known as the wonderdrug but he has to wonder the side effects to an adult let alone a small child, don't let him push you to that route unless she is hospitalized. Protect your daughter, she may not have crohns and there for no need for such a strong drug. If you need us to help you some one is always here for you ok? I would treat anyone's daughter like my own when it comes to drugs, having crohns over 20 years and I have a sister with UC and Crohns and an older brother with UC and another brother with IBS and my uncles do too. I think doctors can sometimes doctors use fire hoses to put out a candle. I am not a doctor and you should always follow his suggestions in the end when you BOTH agree ok? hugs.
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