Is your child on Aza/Imuran?

[Mom2oneboy]

First off, thanks for the replies to my "Sooo discouraged" post. You guys are the best!

After texting with the doctor last night, we are shooting to have another colonoscopy tomorrow to find out the source of the blood. I'm good with this because then we at least know what we're dealing with versus trying to hit a target in the dark. We did labs yesterday and have already delivered a stool sample to the lab this morning. This was transported in a "I can't believe it's not butter" tub and a Bath and Body Works bag. Julie, I know you would want to know this info :ylol:.

In texting with the doctor he says, "We can try mesalamine but honestly he likely needs more aggressive therapy." I'm thinking he is referring to Aza/Imuran as he has previously mentioned to us. I'm trying to prepare myself for this and would love to hear from other parents whose kids are on this med. Did they have any side effects when starting it? Is it working? How long did it take to start seeing some results? How did you wrap your head around the whole cancer scare? Will your child be on this long term?

I don't know what I would do without you all. I think it's the only thing keeping me sane right now!

 

[imaboveitall]

Thanks, Shelley for the poo delivery description. I go every Mon now and am running out of fancy bags. :thumbdown:
Hey it sounds like you may have a Saintlike doc too, texting at night...those kind of docs RULE! :thumleft:

V was never on either of these and I'm sure experts will happen in, so I won't comment on that except to say 6-mp was what The Saint wanted to use at first and it's a common first step drug after pred.

I WILL comment on your worry as you know from my posts I share it in abundance. :hallo3:
When I was trying to wrap my head around Humira, of which I was terrified, it was her QOL that got me there. It was easy to refuse drugs for the first three years (though the Saint always wanted to use them) while she had awesome QOL, lived like she had no disease (except for her dysauto sx but we've been managing those forever) and felt great.
After that vanished and she became a shut in invalid, like I said to The Saint, "the scary drugs are starting to look more like baskets of kittens".

The risks of messing around with a developing child's immune system are real and I wouldn't downplay them, BUT, if he has no good QOL and is missing out on a normal life the drugs may afford, it seems worth it to me.

Had Humira worked to restore V's normal life, she'd still be on it, despite my dread of it. No question about it.

With this ridiculous disease, we really do have to balance giving them a childhood against our valid fears of drug effect. That's the harsh reality of it.

With love and tons of understanding :heart:

 

[Mom2oneboy]

Thanks for always being so supportive Julie!

S's doctor gave us his cell phone number on the very first visit and has said on numerous occassions not to ever hesitate in calling or texting him over a concern. I have never had a doctor do that!! He's more responsive than his nurses, that's for sure.

As you know, I would rather do a more conservative approach and move up the chain of drugs. I know I also have to be realistic and open to changing the course as this disease sometimes dictates. S's symptoms in the beginning were the peri-anal abscesses and some lower right belly pain. He didn't have any blood in his stool and funtioned normally. The scope on 2/22 showed inflammation in his TI. On 3/18 we saw our first blood and then more loose stools. Blood has continued and increased over time. We started EN on 4/2 and this has helped with the lower right pain but cramping and blood continue with his stools. I suspect his bloodwork is going to show anemia. I just don't think we are heading in the right direction and need to consider a more aggressive approach. I don't want to create more problems by staying the conservative route. We are in a different place than we were on 2/22.

We will be continuing the EN regardless! After 2 weeks on it he still has only gained a pound. I was hoping for much more!

 

[Mom2oneboy]

I should add that I AM grateful for that 1lb because it means he hasn't lost any more weight!!

 

[Sascot]

No advice but heading to Aza as well, we can find out together!

 

[MomofIBD's]

Ahhh Shelley....I see your son's ride from "H" continues! I was hoping his 'special food' was helping! I don't know much about MP6 except that will be our next step if my son's ride gets "H"ish again! I don't like it either. But some how we do what we have to do as parents! It's never easy making decisions that weigh heavily on us! (((((HUGS)))))

 

[Twiggy930]

Hey Shelley,

These decisions stink! For me it was weighing the risks of the uncontrolled disease with the risks of the drug side effects. In evaluating the risks of the drug side effects make sure to use the absolute risk not the relative risk. For example if you say something doubles your risk of getting cancer that sounds terrible but if the risk was say 1 in 1000 to begin with doubling that risk would still only make it 2 in 1000. Also a lot of the info out there on azathioprine is based on doses that transplant patients use and IBD patients use much lower doses.

We have been told it will take at least 3 months to see an effect. So far we have had no side effects from it, our current struggles with energy levels predate S going on azathioprine.

I recently heard a story of someone with Crohn's who had a resection at diagnosis and has been on azathioprine since and had NO flares for 18 years!!! Stories like this give me hope.

I am not suggesting what you should do either way just letting you know how I came to terms with these medications. I have a terrible feeling that we are going to be re-evaluating our plan soon and I think biologics are in the horizon.

 

[Tesscorm]

God, these decisions are so terrible; so far, I've been able to avoid this but know I will have a very hard time when it comes.

A very close friend has a daughter (approx. 11 years old) who coincidentally/unfortunately also has Crohns. Previous meds failed (metho) and she started on Remicade last autumn. My friend was sick with worry, my advice was to try to remember that the percentages are small and that these stats are being thrown in our face when our emotions are high, when we’ve been thrown into a new world with issues we’ve never had to consider and then, in the midst of this, we're asked to make these decisions regarding our children. How absolutely ‘f-ing’ lousy!!!

If you really think about it… how often are our children risking cancer (at similar low risk levels) and other dangers? How often do they get sunburnt, not get the proper nutrition because of pickiness, time constraints, processed foods, etc., as teens – ride in cars driven by other inexperienced teens, how many times have you let them do something that had an element of risk, against your better judgement, just because they really wanted it and it made them happy... We’ve all been there, right? (Tell me I’m not the only negligent mom! :shifty-t But, while we try to minimize the risk, we accept them as part of life, we were emotionally secure and didn’t have the stats thrown in our face just as they stepped out the door. I don’t know… I guess this is just me trying to prepare myself for when I have to make that decision! :redface:

My friend is ‘okay’ with the remicade now (as a parent, you’ll never be ‘happy’ with it). Her daughter was in bad shape and just weeks away from surgery but now is GOOD! No pain, gained weight, playing with friends, etc. As Julie said, her QOL is back!

And, Twiggy made a good point in that IBD patients are on lower doses of many of these meds!

Hugs Shelley, these certainly aren't easy choices for us! :ghug:

 

[Tesscorm]

A while back, Dusty posted this article on IBD treatments for children.

http://www.crohnsforum.com/showthread.php?t=22949

 

[DustyKat]

Hey Shelley,

Both of my children are on Imuran...My introduction to the drug took a different path and I would be lying if I said that it was a difficult decision for me to make but I will explain that statement! :lol:

Sarah was undiagnosed for 18 months when she was taken to theatre for an emergency laparotomy and appendectomy. It was during this surgery that she was found to have a ruptured and infarcted bowel and peritonitis. We came within a whiskers breadth of losing her and that was my introduction to Crohn's. I effectively knew nothing about it and looking back on it I now know I was in a haze for quite some time after. Sarah did not see a GI until after her diagnosis, her GP rang the fellow that was to become her GI 3 weeks post op and he prescribed her Imuran. I didn't question it, I think I probably ran to the pharmacy and couldn't get her on it fast enough! :lol: My fear of her dying was so great back then that all I could think of was doing anything to not face those dark days again.

The worries about the drug only came later, when she was well out of the woods and I had time to think of other things, mind you that didn't stop me from grabbing it with both hands when Matt was diagnosed! :eek2: I know the fear of what happened with Sarah will never leave me and I know that fear has numbed my sensitivities to some of the aspects of this disease. I feel like I am between a rock and a hard place...I don't want my children to take this drug but I am scared of what will happen if they don't take it.

When Sarah commenced the drug she was in surgically induced remission. When Matt started he was newly diagnosed but he quickly developed complications and so the Imuran and other drugs he was on didn't "work" as such but I do believe they stabilised his condition and allowed him to move from an acute to chronic phase and therefore postpone surgery until he was in a better place. The other drugs being Prednisone, Flagyl and Augmentin Duo Forte. He also attained surgically induced remission and continued with the Imuran post operatively.

Neither of them suffered with any side effects from the drug. Many people complain of hair loss and Matt certainly suffered with that BUT I personally believe that his hair loss and change of colour was more a testament to his very poor physical condition than the Imuran.

Sarah has been on Imuran for nearly 6 years now and Matt for 18 months. They are both solidly in remission and have been since their surgeries. I will state the bleeding obvious and say...I never want this to end!!!

If someone asked me...What's the worst thing about this disease? I would say the worst thing is that I can't take it away from them and make it my own followed closely by the heart wrenching decisions we have to make on their behalf.

Good luck hun, the only other advice I can give is to remember that there are no wrong decisions here just different ones. :hug:

Dusty. x:heart:x:heart:x

 

[my little penguin]

Ds started on pentasa (mesamalamine) for 30 days back in Sept 2011.
We too were very against drugs since he has to take a lot of other ones for asthma/allergies.
Basically we were told the pentasa was nice but usually did not work on the amount of disease DS had.
SO right before Thanksgiving we started EN + 6-MP.
WE saw a decrease in his sed rate after a month.
HIs other symptoms go better ( stopped bleeding etc...) after 9 weeks.
WE stopped the EN in Feb left the 6-MP and things were still not where they should be. WE added pred for a few weeks that helped.

WE did have liver toxicity by march. His system was shunting too much of the 6-MP to his liver. We had to add allopurinol and now we are tweaking his dose of 6-mp still in April.

Other wise no real side effects and the docs watch the blood levels very very closely in the beginning ( every week then every two) so the slightest increase in anything they are on top of it.

At this point we are just praying it will work and glad he only has to take a pill versus go for infusions or injections KWIM.
:hug:

 

[Mom2oneboy]

Ds started on pentasa (mesamalamine) for 30 days back in Sept 2011.

Did you see any benefit from the pentasa at all??

 

[Mom2oneboy]

If someone asked me...What's the worst thing about this disease? I would say the worst thing is that I can't take it away from them and make it my own followed closely by the heart wrenching decisions we have to make on their behalf.

Isn't this the truth! I actually feel like my heart breaks a little more each day!

It's encouraging to hear your childrens' stories. May they continue in good health for years and years to come.

 

[Catherine]

My daughter is taking Aza, since late January and had the dose increased to 75mg two weeks ago. I am still holding on to her GI plan that she come of this drug in 2 years if the disease mains stable and move in a low class of med.

Don't know what our decision would have been about medication would have been if Sarah had been so sick at dx, weight hadn't been just dropping off her.

Wishing you all the best with what ever your decision is.

 

[my little penguin]

We saw no improvement at all with Pentasa. He just continued to get worse. It was the like we were giving him vitamins.

The only time he was worse was when we did the wash out with 6-mp.
We lowered his dose from 50 mg to 12.5 mg for a week before adding the allopurinol.
That was when all of symptoms got really bad.ale:Once the allopurinol was back in things really improved. It was a good test per our GI since we now know even if things aren't as good as we would like he is responding to the 6-MP we just need tot find the right dose.:dance:

 

[my little penguin]

My daughter is taking Aza, since late January and had the dose increased to 75mg two weeks ago. I am still holding on to her GI plan that she come of this drug in 2 years if the disease mains stable and move in a low class of med.

Don't know what our decision would have been about medication would have been if Sarah had been so sick at dx, weight hadn't been just dropping off her.

Wishing you all the best with what ever your decision is.

You may want to look at some of the UK studies on this.

I need to find them but most point to a high rate of relapse when the 6-mp is stopped.

 

[Mom2oneboy]

Just talked with the doctor and went over all the lab results from yesterday's blood work. His Ferratin is low but his hemoglobin and everything else looks good. Based on all the blood he has lost this past month, I am shocked but thrilled. His colonoscopy is tomorrow at 12:30 so we are in the prepping/pooping stage tonight. Jule, my friend, do you want to have a sleepover? ;-) Praying we get the answers we need tomorrow to make the right decisions moving forward on his treatment.

 

[my little penguin]

ly. Two trials examined relapse rate at 5 years with pooled OR 0.53 (95% CI 0.13 to 2.21).

From:
http://adc.bmj.com/content/96/Suppl_1/A19.1.abstract

THere were a lot more studies but 53% is higher than I want to deal with.:faint:
Hopefully there will be new data in two years for us.

 

[Catherine]

In Sarah case her level of disease would never of made aza the first choice of medication for her. Only she symptoms did.

The plan is provide she gets into a longer period of remission and all tests are clear for least year.

The only way of telling whether someone is in the small percent of people who have only one attack is going of all medication.

This plan also requires careful monitoring, include blood tests every three months for the rest of her life and regular colonscopies.

It at least 1 year before we need to make a decision anyway, more likely not two and she will then being making the decision herself as she will 18.

 

[Catherine]

Thanks for the studies, clear evident aza should continue for 18 months.

It was helpful.

 

[my little penguin]

Catherine that makes a lot of sense for your daughter.

Hope the plan works out well.

 

[Tesscorm]

Shelley, good luck with the colonoscopy tomorrow! I hope it provides clear answers and a solid plan!!! :ghug:

 

[Mom2oneboy]

Thank you Tess! Regardless of the plan, we WILL be continuing with the EN! His Albumin level has increased nicely and I really think it's because of the protein he's been able to absorb via the formula.

 

[momoftwinboys]

Writing on phone while at boys football practice...please bear with the grammar.
We followed dr's lead from beginning. Started on pred, previcid the day after scope dx. Pred worked great almost immediately. Did not have bad side effects and it helped his appetite which was a good thing. Less than a week later had first visit when he started aza. He was off pred in app. 6 weeks and so far so good on aza. Knock on wood....he has done really well for the last six mo We were shellshocked in the beginning. After things settled down went to ccfa seminar re ped drugs. Dr presenting was really good also talked about top down approach. She was preg with her 2nd child. She said as a mom it was sometimes hard to ask parents to give their kids these drugs....but there was things that made it easier. Yes there is an increased risk of lymphoma etc. but untreated disease increased colon cancer. Net impact, treatment did not increase cancer. Lymphoma risk is 2 out of 10,000 for avg person. Add aza and you add 6 to the 2 so chance is 8 out of 10,000. Still a 99.92 chance of not getting it. Plus kids r having reg blood tests and nurse said they would see in blood b4 it went too far. Skin cancer is another thing I have concern about but think that can be watched as well. There r 700,000 people on aza world wide and it has been around for a while.
Asked pharmacist about the hazard warning about washing hands and everything the aza comes in contact with. They looked it up. Said it is mainly to protect preg women and severly immuno comp people since the residue could be transferred to them.
So that is how I have got ok with it. He has done well on it and for that I am grateful. I plan on talking to gi next week re ng tube feeding next week. H is willing to consider it. One of the side effects is decreased appetite and he does not eat as much as we would like. Since your son is already doing en that is a plus Overall aza is working. Don't want to rock the boat.
Our other son has a 60 percent chance of getting it per the drs often within a year. That is the percent i do not like the most So I have done some soul searching about how I would approach treatment knowing what I know. Not sure I would approach much diff if drs suggested same path.

No easy answers. Good luck tomorrow and in whatever path you take.

 

[Mom2oneboy]

Momoftwins, thanks so much for the great info and typing that all on your phone! I've never heard about the decreased appetite side effect of Aza. Another good reason to keep S on EN. He never had a great appetite prior to Crohn's.

How did your son present with his crohn's? Gosh, I hope your other son doesn't develop it but if he does you've already done most of the legwork and have so much more knowledge now.

Thanks for taking the time to reply. I appreciate it!

 

[imaboveitall]

I'm glad you're going to continue the formula! :biggrin: I know I am a broken record about it, I just love the guaranteed nutrition aspect. Love it. And V is such a convincing argument for using it long term. Her growth velocity has been beyond impressive.
From what I read on here, her initial gain on it seems to be really out of the norm. No wonder The Saint sent her case away to a REALLY bigdog who has done studies on EN. I wonder why her gain has been so tremendous and others not as much. THis makes me again go to, does she have something ELSE going on :ywow:

HUGS :heart:

 

[Tesscorm]

'post moved to another thread'...

 

[DustyKat]

Our other son has a 60 percent chance of getting it per the drs often within a year.

All the articles I have read, and they support what my GI told me, state that if one sibling has IBD there is a 30% chance another sibling may also develop it. I have never seen a time frame suggested in which this may happen though.

Dusty. xxx

 

[momoftwinboys]

Think the figures they quoted us is for identical twins and what they have seen. Mentioned some studies out of Scandinavia.

 

[Tesscorm]

Momoftwinboys - my friend's daughter is 11 years, is a twin (not identical) and was diagnosed with crohns two to three years ago - no other siblings (four children in all) have shown any sign of crohns so far...

 

[momoftwinboys]

Faternal twins are like other siblings genetically. Each start off with their own egg and sperm. Identicals start off as one egg and sperm and split so DNA is exact replica at the beginning. From there environmental factors can vary. I do like the 30 percent better

 

[Tesscorm]

Yes, sorry... I think I posted my last response at the same time you did I hope the 30% is the 'correct' stat!!

 

[DustyKat]

:facepalm: Didn't think of the twin aspect of things!

I can see that they would pull the data from that region. I know Denmark tracks every child's health care visits from birth.

Dusty. xxx

 

[momoftwinboys]

Shelly, H's presentation was lack of growth, D with mucus and occasional blood, and cramping. Note some of these symptions I did not realize till the dr visit and the questions were asked. In hind sight, he complained of stomach pain 9 mo's earlier and was prescribed tagamet. Totally forgot about that until I was cleaning out the medicine closet a couple of months after dx.

Dusty, the gi dr talked about the 60%, at our first visit after dx. I can not remember who I talked to at the ccfa seminar who said the other twin was often dx within a year, think that may be more anecdotal.

N started complaining about stomach pains earlier this year. Mentioned to H's GI..said to take him to pediatrician, get some baseline blood tests done. Making that call made me want to throw up. With his brother's situation, ped ordered blood tests and gave a referral to ped gi clinic. Blood tests were normal. Ped GI put him on miralax and his pain has gone away. Follow up in 3 months. Crohn's always seems to have me wondering when the other shoe is going to drop. I try to stay positive and focus on what is going well and overall it is going well.

 

[mum16]

Imuran for 7 month and doing fine

My daughter (almost 16) was diagnosed with Crohn's on 1st of May 2011, after emergency surgery where 50 cm of the ileum, the appendix and 15 cm of the colon was removed. Prior to the surgery she had been in excruciating pain, in and out of hospital emergency units, had tonnes of different tests, one of which ruled out Crohn(!), an idiot doctor who suggested anti-depressants for teenage girls and other similar stories. After surgery, she was on Pentasa and Prednizone for 3 month, then 3 g Pentasa a day combined with 100 mg of Imuran. At the time I think I was still shell shocked from the diagnosis, but managed to double check with a few other doctors. Her risk of colon cancer is probably even higher as my mother had it. However, she needs a chance of as normal a life as possible with this d...... disease. She is now doing very very well, is busy with SATs, final exams, amateur theater, and all her many friends. The only side effect so far is the occasional dizzy spells.

The back-up from her friends in this whole experience has been fantastic, and helped her a lot.

I have a question for the group: What can you recommend of pain killers? My daughter has heavy period pains, paracetamol isn't enough, Advil, Brufen, Aleve and similar is not recommended for Crohn's patients and in this part of the world (we live in the UAE) all Codein products are banned.