Update on 15 Year Old Daughter

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jaems

jaems

Joined
May 7, 2013
Messages
35
So, we had our first appointment yesterday since starting the Canasa and Entocort EC almost a month ago. However, my daughter hasn't seen any change, as she still has diarrhea with mucus every day. The Dr decided to take her off the Canasa, keep the Entocort, and add Asacol and Azathioprine. He also added a med for the acid reflux. On top of the change of meds, he ordered the Prometheus blood test and a MRI. We're praying that our military insurance will cover the blood test, as I'm not 100% sure it's worth paying out of pocket for.

Anyway, that's where we're at right now. I have to admit, I'm a mess thinking about her being on the azathioprine. I'd almost rather her not be on any medication! This is such a struggle for me. I feel like I'm gambling with her health either way I go. I just want her healthy....
 
Hi there, many people say they are scared about potential side effects of aza (after all those side effects read really scary) but when you look closer azathioprine is actually *benign* in the big picture. For instance, yes it increases the risk of particular types of cancer (lymphomia) but the stats are 4 in 10,000 with aza compared to 2 in 10,000 in the general population. The infection risk and risk on the liver is mitigated by doing regular blood tests and using the right dosage.

If anything, I would be more concerned about the long-term effects of entocort. For me, that's the really scary stuff long-term (short-term it's acceptable to use steroids to fight inflammation).

Anyway, I hope aza works for her. Be sure that your GI puts her on the right dosage (effective dosage is about 2mg to 2.5mg per kg body weight or 0.9mg to 1.1mg per lbs - anything below that dosage is highly likely to not work). Also, aza takes quite a while to work - at least 2-3 months. So your daughter and you need to be patient.

Is your daughter adhering to a good diet, doing sport, doing something for stress relief etc.? Drugs can always only support getting you into remission, by themselves they rarely work if all the other pieces of the puzzle are not in place.

Cheers,
A
 
We're all in the same boat, Jaems. I struggled with putting DS on Aza as well, but thanks to the many wonderful people on the Forum, realized that untreated or undertreated Crohn's is nothing to mess with either. We took the leap of faith last month and are currently waiting for the Aza to kick in.

A friend also pointed out that, while the side effects and long term effects can be worrisome, we need to do what's best for his quality of life right now. He wants to go to school, hang out with friends and play sports. He can't do any of that if he's on the toilet feeling miserable all day. Thinking of it that way helped me put the whole thing in perspective.

It's an unfortunate balance. Lots of people here to ask questions of and share your concerns with. Hang in there!
 
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Probably keeping on the entocort in order to give time for the aza to start working alex_chris is right it takes a few months to get to theraputic levels.
I know it is scary to read about all the side effects on these drugs but I believe someone has said on here reading the side effects on tylenol is scary as well yet we don't think anything of them.
When your daughter is feeling well and enjoying life these drugs are a miracle and you just want them to keep working.
My husband has been on aza for about 8 years now with no side effects. My son was on them for about 2 1/2 years with no side effects and he went from a child who was too tired to do anything and spending lots of time in the bathroom back to a child who loved to play sports and is very outgoing.
One thing to bear in mind that untreated or undertreated Crohn's can be worse then the side effects of the meds.
Hope you find what works for you and your daughter and she is soon feeling better.
 
^^^Yea what they said. I always sound more intelligent when someone else says it.:smile:

I hope all goes well and it works quickly!


HUGS
 
I agree with everyone else. Its scary to think what might happen down the road but you have to think of now and getting your daughter in remission.

My daughters has been on imuran for 3 months and crohn's wise she is symptom free.

Try not to worry...:ghug:
 
Hey jaems...:hug:

It surely is a heartbreaking and fearful road you find yourself and one which we are all travelling unfortunately. :(

I can see what the doctor was thinking straight up, start with the mild drugs but to be honest the chances of your daughter responding well to that combination would be slight at best. The reason being that she had already developed an abscess. An abscess is a complication of Crohn's and therefore takes her out of the realm of the mild to moderate disease that those drugs are targeted to.

Entocort is more a topical form of steroid and therefore doesn't have the same extent of systemic side effects that Prednisone does but the trade off is that it isn't as effective either.

Has the doctor mentioned Enteral Nutrition to you at all?
It is not used anywhere near as widely in the US as it is elsewhere in the world. It does have the potential to be as successful as Prednisone at inducing remission but it isn't an easy route to take. Of course the benefits are that if you are concerned about meds it negates that worry as well as providing bowel rest and all her nutritional needs. Perhaps worth discussing with the doc. There are many parent's here with loads of experience using EN

EN is not a long term solution to keeping Crohn's at bay, for that you need to look to maintenance meds such as the Azathioprine (imuran) the doctor is now suggesting. Both of my children required surgery, which induced remission for them, and have used Imuran as a maintenance medication since then with great success to this point. Do I hate that they need to take this med? Too bloody right I do but I have also seen what untreated Crohn's can do, my daughter went undiagnosed for 18 months, and we came within a whiskers breadth of losing her. As much as I do hate Imuran I do see it as the lesser of two evils.

You are in good company here Mum and I hope with all my heart that your dear daughter soon finds long and lasting relief, bless her. :heart:

Dusty. xxx
 
Ditto to what everyone else has said. :)

My son recently started remicade and it made me sick to think of it. As enteral nutrition kept him in clinical remission for almost two years, I got a bit of a reprieve from moving on to the meds, however, those two years were filled with dread of what was coming as I knew meds would be coming at some point! :( I think what helped me was to really see the risks I allowed my kids to take every day to improve their quality of life - hockey, horseback riding, driving alone when still inexperienced, being driven by inexperienced teens, going away to cottages with friends (swimming, etc.), the list could do on and on and I would bet the risks of some of those activites were as great or greater than the meds. I accept those risks willingly to allow them to better enjoy their lives; I try to think of remicade in the same way... I certainly wish I didn't have to accept meds at all but it helps me when I put it in this perspective. :ghug:
 
Thank you all so very much for the encouraging words. I needed them! I do have a few friends who are really pushing the naturopath route as well, but I feel like we need to get her into remission first before trying that. Does anyone have thoughts on a naturopath or has been to one?

alex_chris, she is eating well, and she's about to start a running program. She's in voice lessons and just made the high school's musical auditions! These things bring so much happiness to her!

DustyKat, he did mention it yesterday, but said that he views it has a short-term fix. He did mention that if we ever wanted to go that route, he'd support us, but he did say as soon as she got off, everything will start all over again. We talked to her about it, and she's not a fan...at all. Since she is older, we're trying to include her in a lot of the decisions. Thank you for your input on the EN!!

Seriously, thank you all so much for taking the time out to reassure me. You have no idea grateful I am.
 
Regarding whether the Promethius test is worth the money, I would say definitely that it is. This little test they do at the beginning of treatment can sure help you avoid a lot of problems if your daughter doesn't have the right enzymes to change the AZA to 6MP or to break it down - it gives more risks to her having liver disease and for the med not to work. I hope your insurance covers it.

I was a mom who tried to treat my daughter's crohn's symptoms for years using this or that "natural" remedy. In the end I had to stop and admit to myself that our trying the various treatments both delayed effective treatment and didn't work. Yes, it works for some, but I think in general that is a minority. Traditional medicine is really going towards "evidence based" models, and doctors are hesitant to prescribe treatments unless they can see that they are more effective than other treatments for more people. Whether the treatment is a medication, EEN, LDN, or a diet, your doctor wants to give what has the least side effects, is the safest, but ultimately what is going to be the most effective for your child. Does that mean that some people won't have adverse events that others don't have? Not all the time. Does it mean that your child will get better on the first treatment tried? Not all the time. Does it mean that many children will get better sooner and have more deeper healing when this route is taken. Unequivically yes! I had to reach a point where I let go of some of the reins and allowed my docs to help us. We're not where we want to be completely in the way of Jaedyn's health, but she's way better than she was 6 months ago, 15 lbs heavier, doing activities she couldn't do before, no longer having daily pain or diarrhea...

I hope my note was an encouragement for you. Doctors aren't all evil, nor are they gods, but they do have a lot of experience and training, and I think God can use them to help our children.
 
Carolinalaska - I may be wrong but I don't think the Prometheus test is the test to which you are referring. To test liver enzymes, the test is called TPMT (but I don't know if there's another Prometheus test that also tests enzymes??). As I understand it, there are different Prometheus tests - genetic testing, testing for antibodies or for remicade levels. It is also used to diagnose Crohns - this may be 'another' prometheus test (or may be part of those I mentioned).

But, please someone correct me if I'm wrong! :blush:
 
We've had the promethus liver test when Jack was on Aza usually once a year and my husband has also had this several times while on Aza which may be what it is. Jack has also had the prometheus prognostic which test genetics for Crohn's disease, his GI wanted that to get a bigger picture of his disease. Insurance paid for both.
 
Thanks for that link! Wow, I didn't realize there were so many Prometheus tests! :eek: No wonder I'm so confused! (Where's Crohnsinct with the wine? - that should clear things up! :D)

sorry jaems - I hope I didn't cause more confusion!! :)
 
Yes Tess, loads of them!

I would imagine that him ordering the test when discussing the commencement of Imuran that it would be the TPMT test.

Dusty. xxx
 
The Prometheus test that he wants to order is only done in San Diego. So, we would have to take blood here (Utah), and have it over-nighted to San Diego. This test is genetic test to check for Crohn's, UC, or Celiac. The specific test he ordered is called: Prometheus IBD sgi Diagnostic and add Prometheus Crohn's Prognostic.
 
^^^ Yes my son had that one I think his GI just lumped them together as Prometheus prognostic. It took about 2 weeks to get results and insurance did pay for it. Only caveat I have is it will give you a percentage of likelihood for surgery/complications. Try not to pay to much attention to it as Jack's GI said it gives them a baseline for how aggressively to treat Crohn's for example Jack's was I think a 70% chance of surgery in the next 5 years and 90% in the next 15 with those odds he would normally have him on a biologic but since Jack is doing so well on current meds - we are not changing and I really don't see surgery in the next 5 years (knock on wood, cross fingers and whatever else).
 
jmrogers4,

Thanks for the heads up! I've read up on the test some, so I need to keep in mind to NOT get worked up over it...no matter the results. What I'm working on, is taking this all one day at a time. Thanks again!
 
Do you mind if I ask why he wants the diagnostic test done when your daughter already has a diagnosis?

Fair enough for the prognostic but at this point I think it would also be prudent for him to add TPMT to the request.

Dusty. xxx
 
Tesscorm said:
Carolinalaska - I may be wrong but I don't think the Prometheus test is the test to which you are referring. To test liver enzymes, the test is called TPMT (but I don't know if there's another Prometheus test that also tests enzymes??). As I understand it, there are different Prometheus tests - genetic testing, testing for antibodies or for remicade levels. It is also used to diagnose Crohns - this may be 'another' prometheus test (or may be part of those I mentioned).

But, please someone correct me if I'm wrong! :blush:
Click to expand...

Prometheus is a lab that can be used for TPMT, but we also had a test called 6MP metabolites that was done by Promethius 2 weeks after starting the med that only they do. Maybe I'm mixing it all up...
 
jaems said:
The Prometheus test that he wants to order is only done in San Diego. So, we would have to take blood here (Utah), and have it over-nighted to San Diego. This test is genetic test to check for Crohn's, UC, or Celiac. The specific test he ordered is called: Prometheus IBD sgi Diagnostic and add Prometheus Crohn's Prognostic.
Click to expand...

So, with this clarification, I understand your hesitancy to want to do this test. I'd have some considering to do myself...
 
Agree with all above so won't bore you there.

We did go see a naturalpath who in a previous life was an MD. He encouraged us to go with the meds and basically said he could just help us support the meds and treat any illnesses that came our way. A friend of mine sees a naturalpath and she asked her for me and she just sucked through her teeth and said, "ugh...Crohns...that is a hard one". I recently switched my family over to a plant based diet as it seems to cure every disease known to man but the one disease you never see listed is IBD. Guess it is a hard one.

I have read one or two posts from other parents who had seen a nutralpath and had some success and a few others who ended up with drugs down the road. I guess it is like everything else with this blasted disease...depends on the doc, your child, thte disease in your child, etc.

Good luck!
 
DustyKat said:
Do you mind if I ask why he wants the diagnostic test done when your daughter already has a diagnosis?

Fair enough for the prognostic but at this point I think it would also be prudent for him to add TPMT to the request.

Dusty. xxx
Click to expand...

I can't say why her GI is asking, Jack's wanted a bigger picture as he thought we were missing something since Jack wasn't gaining weight/growing. It gives Serolgy Results, Genetics Results and Inflammation Results. When the GI called me with results his comment was there are 3 possible gene mutations and having any one of those gives you a genetic disposition towards Crohn's. Jack had a mutation of all 3 does this make it so that he could possible be more severe? I don't know and it was one of those questions I need to ask him but that was the impression I got.
After getting the tests back he believes Jacks has/had Crohn's activity in small bowel and probably some stricturing. We talked of doing a barium pass and MRE/MRI but are holding off since Jack is doing so well and it would not change treatment at this point.
 
crohnsinct said:
Agree with all above so won't bore you there.

We did go see a naturalpath who in a previous life was an MD. He encouraged us to go with the meds and basically said he could just help us support the meds and treat any illnesses that came our way. A friend of mine sees a naturalpath and she asked her for me and she just sucked through her teeth and said, "ugh...Crohns...that is a hard one". I recently switched my family over to a plant based diet as it seems to cure every disease known to man but the one disease you never see listed is IBD. Guess it is a hard one.

I have read one or two posts from other parents who had seen a nutralpath and had some success and a few others who ended up with drugs down the road. I guess it is like everything else with this blasted disease...depends on the doc, your child, the disease in your child, etc.

Good luck!
Click to expand...

Grace's GP is a MD and a ND (naturalpath).
She is well sought after. The only reason Grace got in is because my retiring doctor asked personally. She said the same thing as high lighted above in crohnsinct remarks. I love the fact that I get both. I can defiantly see how some of the vitamins have help but others not so much.
 
DustyKat said:
Do you mind if I ask why he wants the diagnostic test done when your daughter already has a diagnosis?

Fair enough for the prognostic but at this point I think it would also be prudent for him to add TPMT to the request.

Dusty. xxx
Click to expand...

The results from my daughter's upper endoscopy and colonoscopy came back kind of contradictory. Although she has inflammation in the terminal ileum, she also has inflammation in the rectum. Neither one of these had the actual granulomas. According to my Dr, most inflammation in the rectum are caused by UC, however, she just had a perirectal abscess. The abscess is a sign of Crohn's...along with the inflammation in the terminal ileum. So, since there are a lack of granulomas, he wants more support in his "guess" that it's Crohn's.

I hope this makes sense. He believes it's Crohn's, and we're treating her for Crohn's, but he wants more tests (the MRI and the Prometheus blood) to help solidify his theory.
 
Ds has inflammation in he rectum but for him they also found granulomas in the ceacum and TI plus inflammation elsewhere so crohn for him.

Good luck with the test
 
It makes perfect sense jaems. :)

Yes, granulomas are a clincher for a clearcut Crohn's diagnosis, which is ironic when about 50% of sufferers don't have them. My son didn't have granuloma's so all his pathology, scope and surgery, didn't support a diagnosis of Crohn's as such.

Dusty. xxx
 

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