Stressing out about our choice for medication

[jeteyetaylor]

Hi, I am new to the Crohn's forum. My son, 9 years old, was recently diagnosed with Crohn's. We were started on oral prednisone with a taper and now getting ready to start Azathioprine. I am freaking out about the possible side effects of cancer. Can anyone give me info on their history with a child and length they have been on it. Or anyone who started meds at a young age. Additionally, should I consider the EEN method. It was briefly mentioned to us. Any info would be greatly appreciated.

 

[crohnsinct]

Welcome although I am sorry you found a need to be here. The parents here are an excellent source of information, advice, and encouragement.

EEN was great for my daughter. We used it instead of adding Methotrexate when Remicade wasn't quite getting her to remission. EEN has proven to be just as successful as prednisone with getting some kids to remission. THe added benefit is good nutrition and help with weight gain etc. However, it only works while you are on it. Once stopped, the disease creeps back. For some it is a few weeks, some a few months. The problem is that while disease is creeping back in it is doing damage. For this reason most docs will use EEN the same way they would steroids.

Most maintenance meds take a while to get to therapeutic levels. For this reason docs usually start the maintenance med at the same time as prednisone or EEN. The hope is that by the time you are fully tapered or have completed the 6-8 weeks of EEN the maintenance med is ready to take over.

I know the risks are very scary at first. But the risk of undertreated or untreated disease are even worse. Here is a very helpful presentation on risks that helped me make all of our med choices. Believe it or not, my daughter has been on these meds for almost three years and been doing amazingly well but I still have to read this from time to time to reassure myself.

http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

BTW - as for their risk of catching anything, my daughter is the healthiest one in the house. We have had the flu, mono, colds, stomach bugs etc all brought into the house and she is the only one who has escaped unscathed every time. As a matter of fact, her youth group was on a trip and of 13 of them 7 came down with mono...go figure.

Good luck with your decisions.

 

[Cupkatemom]

My daughter was diagnosed just after she turned 10 last year. She started her medication on December 31st. I was terrified! But so far, she has been doing wonderfully! She did have to go on prednisone for 5 days at roughly week 4 due to a terrible sinus infection and erythema nodosum. In her, I would l say we saw the medication working at around week 6. This is when she started gaining weight again and stopped using the restroom as much. Today, she looks like your average, healthy child and is playing soccer better than ever before.

 

[CrohnsKidMom]

Welcome to the forum! My son was dx'd at age 8. We were given the choice of EEN or Prednisone for initial treatment. We went the Pred route, but our GI really recommended EEN. Either way, a maintenance med has to be introduced, and like you, it is upsetting to read of all the possible side effects. We tried Aza, but my son could not tolerate it. He is now on MTX injections, and is doing well. It is a bumpy road to remission, but your son will get there.

 

[Farmwife]

Hi and welcome to the forum.
My beautiful blessing of a daughter is 5 but she was dx at 3.
She's been on EEN, LDN, Pred, Humira and now on Remicade and MTX.
Yes the cancer risk is enough to keep any parent awake at night.
I don't care how minute, its a terrifying thought.
However, if you take time to look at the statics of untreated or undertreated IBD the results are even more upsetting.
So I choose to give the meds that will hopefully let her have a happy childhood.
Hugs, please ask as many questions as you like.

 

[my little penguin]

Ds has been on pentasa, 6-mp, 6-mp plus allopurinol ,Mtx,remicade plus asacol,humira and now humira plus Mtx .

So far so good

 

[Pilgrim]

We avoided pred by using EEN as a way of inducing remission for our daughter ate age 3 when she was diagnosed.

She drank the formula (loved chocolate) and while the first 3 days of adjustment were tough, she made it through the 6 weeks successfully into clinical remission. Unfortunately, she had an allergic reaction to Azathioprine and we were not able to use it for maintenance.

We are using EEN now for another 6 week course and are going to use it as we begin her next med, which will likely be Humira. Hopefully we can continue to use it to maximize the effects of Humira (but eventually add partial food too as it does get tiresome for the kids).

I would research it as a successful alternative to get your son into remission without the effects of Prednisone. In some countries, although not so much in North America, it is the first line treatment for pediatric Crohn's.

Whatever route you choose, know that there are kids out there on the same road. And us parents are around here to give support. I think between us all, it has all been tried!

Keep us posted.

 

[jeteyetaylor]

Thank you for all the replies! We started the Aza med and the second day in he started having pain around his sphincter and became constipated. I am hoping that it was a coincidence. We are tapering of the pred and decided against the EEN for now. I was under the impression you could do EEN instead of the Aza. It is so comforting that we have this forum to talk, share info, and ask questions.

 

[my little penguin]

En can be used as a supplement in addition to meds
Ds uses it
It lets crohns kids grow and gain the same as their peers .
Highly recommend it.
Ds drinks peptamen jr 2-3 a day plus food

 

[Pilgrim]

We did EEN and then partial EN with AZA, the AZA just didn't work out for us.

Now we are doing EEN alone until we get started with Humira. We will do both with the Humira too.

There was a study that showed kids on Remicade had better improvement when they stayed on partial EN.

You can do EEN alone, but that isn't the right road for everyone.

 

[jeteyetaylor]

Can your order peptamen or do you get it through your doctor? I would like to try both, I just dont think he would do the tube. Has anyone had success with probiotics as a supplement too?

 

[my little penguin]

Your Gi should be able get you samples to try first
Ds tried
Peptide Elecare neocate and peptamen

The doc sends a script to the durable medical company and you decide when you need shipments .
Insurance covers it this way as infusion therapy supplies -not formula.

You can order it from nestle nutrition store by yourself

 

[Pilgrim]

Research has shown that the results do not depend on the type of formula used.

We are using Ensure or Boost which we can buy at any pharmacy or grocery store.

We got our GI to write a prescription for it, so that we can run it through our pharmacy and then submit receipts to insurance. It looks like we will be partially covered for it.

We do not use a tube. We had to experiment to find a flavour that works. She's a chocolate girl. She won't drink any other kind now.

Also we are working with a registered dietitian to monitor our daughters weight and calorie intake on the Ensure. She was gaining too much weight recently. I am glad we have the help of a dietitian, we can email her anytime with a question. We email the weight in every week and she lets me know if we need to adjust.

 

[my little penguin]

Most insurances in the US do not cover formula as a prescription
Only if it's partially broken down for oral feeds or all tube feeds.
Most insurances have clauses about paying x percent of medical equipment cost
This includes infusion therapy supplies (aka formula).

Also some kids do ok with boost or ensure some still need a more broken down formula.
Ds is one of those we tried boost kids prior to dx but has to switch to peptamen jr.

 

[Maya142]

My daughter couldn't tolerate Boost/Ensure either. We just switched to using a tube a couple months ago, but prior to that she drank Peptamen Jr. Our GI got us a bunch of samples (Pediasure Peptide, Peptamen, Peptamen 1.5 etc.) that she tried and would only drink one flavor of Peptamen. When we did the tube, she couldn't even tolerate larger quantities of Peptamen and so we switched to Neocate. That's is finally working and she's gaining weight.
She was VERY against the tube and resisted it for a long time but finally she lost so much weight that her GI insisted. Now she thinks it's MUCH easier than drinking Peptamen.

 

[Pilgrim]

It is very much trial and error/ and individual tolerance.

I was only pointing out that there has been good research to support remission with the use of any type of formula. Some parents (I am one and maybe we've all been there at the beginning) have trouble with the idea of a tube. Sometimes with EN, if you can just get started with drinking a polymeric formula it is much easier to wrap your head around.

We had trouble with insurance up here too, but we persisted, and getting a "prescription" for the Ensure helped a lot. Actually, we were told it wouldn't get covered unless she used a tube at first, but they relented.

 

[Maya142]

Absolutely! If she had been able to tolerate Boost/Ensure, that would have been much easier. She just wasn't able to drink the quantity of anything (Peptamen/Pediasure) she needed to keep her weight up.

The tube really sounds a lot worse than it is. Of course, if you can get away without it, that's obviously the better option. There are videos of kids inserting the tube online, if you are interested in showing your son jeteyetaylor.

 

[Pilgrim]

Jeteyetaylor, were you able to find out his disease location yet? How are his weight and symptoms?

 

[Jmrogers4]

We did Pred and started Aza when my son was first diagnosed at 10 years old. He was on and off Aza for about a total of 3 years time. In the end it just wasn't strong enough to achieve solid remission for him. We used EN as a supplement when he was 13 as he was severely underweight and then in place of prednisone to try and bring under control a flare when he was 14.
But he has been on Azathioprine (along with allipurinol to make it more effective); Methotrexate, LDN and now doing well and in remission on remicade.

 

[Mehita]

My son was on Azathioprine for six months with no side effects. Unfortunately, it just wasn't strong enough for him and he continued to flare along with developing an abscess and fistula. He had to move on to Remicade and has been doing great since.

Im assuming you're on a schedule for lab work to monitor how things are going? I'd also ask your doctor what the plan is for the Aza. How long until it works, how long until you decide it's not working.

Good luck!

 

[jeteyetaylor]

In the summer of this year I remember thinking how thin my son was. I could see his ribs and just thinking hmmm... You know moms inutition. Then looking back he was generally the tallest kid in his class but in the last year I thought to myself how weird that he didn't seem to be growing much and how all these kids were catching him or passing him by. Again, just thought it was normal growth changes. He started in september this year yelling "hey mom there is blood in my poop". Thought it was just hard poop issues. Then I looked at his poop and knew it wasn't right. Now having all the blood work and colonoscopy and endoscopy I am like .... Wow this makes sense...duh! The gi doc started him on 40mg pred daily for 1 week, 35, 30, 25, etc... At 10 mg he reflared a little (blood in stool), bumped up then down one week. Had blood work all inflamm markers good. Platelets still high, as well as eosinophils, neutriphils, and monocytes. Started aza then had another reflare 2nd day on that with 10 mg of pred. But this one was bad pain around sphincter, urgency but constipation. Couldn't walk without butt pain. Had blood again. It resolved after using miralax and stool softener. Still on aza with taper. He is gaining weight and grew a little just in the 5 weeks. Eating like crazy due to steroid. He is lactose intolerent for now. His colonoscopy/endoscopy showed ulcers from his mouth to anal sphincter. Mri with contrast was normal for the other feet of bowel not seen with the end/colonoscopy. The doc has only been in practice three years. I am considering going up to Childrens Mercy in K.C. Only to make sure we are on right track. Trying to figure out foods now too. Not sure what is good or bad. He tested neg for gluetan senesitivity.

 

[jeteyetaylor]

How often should blood work be done on aza? I thought every month but doc said every 3 is ok.

 

[jeteyetaylor]

Any one with two kids that has Crohn's?

 

[my little penguin]

Bloodwork is done every week to two weeks for the first month then once a month then no less than every three months.

Dusty posted a chart on bloods at one point.
Need to stay on top of possible liver issues quickly (ast/alt )

 

[my little penguin]

This has the chart -table 1
Weekly for the first month
Then every other week second month
Then once a month
See below

http://www.healio.com/gastroenterol...6-a430-d735ef89a8d7}/how-do-you-monitor-patie

 

[CrohnsKidMom]

My son was only on aza for about a week, as he had a reaction to it. But, I recall bloodwork was to be done every week at first, then every 2, eventually extending to once a month. Having bloodwork done just once every 3 months when he is just starting the med doesn't seem often enough to me. But maybe the protocol has changed, and again, we didn't get that far and had to switch to MTX injections.

 

[DustyKat]

Thank you for all the replies! We started the Aza med and the second day in he started having pain around his sphincter and became constipated. I am hoping that it was a coincidence. We are tapering of the pred and decided against the EEN for now. I was under the impression you could do EEN instead of the Aza. It is so comforting that we have this forum to talk, share info, and ask questions.

EEN is done instead of Prednisone, not Azathioprine. Studies do show that in paediatric patients it is as effective as Pred at inducing remission but like Prednisone it is not meant as a long term maintenance treatment. As has been said it can be used in conjunction with maintenance medication to help maintain the state of remission and/or assist with nutritional needs.

mlp has found the suggested blood regimen chart. The 3 monthly draws are the minimum standing requirement once you move through the initial regimen and whilst ever Azathioprine is being taken.

Any one with two kids that has Crohn's?

I have two children and they both have Crohn’s.

They also take Azathioprine as a maintenance medication. My daughter has been on it for 8 years and my son 4 years. Neither has had any side effects from it.

Good luck and welcome aboard! :ghug:

Dusty. xxx

 

[kimmidwife]

Just wanted to say welcome to the forum. You have already gotten a lot of great advice but I would talk to the doctor about the frequency of the blood work as the others mentioned above it is very important with aza to monitor the liver enzymes.

 

[jeteyetaylor]

To Crohnskidsmom and others, what was the reaction your child had to the aza?

 

[Mehita]

Did you have the TPMT test done yet?

 

[Pilgrim]

My daughter developed pancreatitis from the Azathioprine between her second and third weeks on the medication. She had to drop the drug, and can't go back to a thiopurine drug. So, no Aza and no 6-MP for her.

This will be one of the things they check for with the labs. Her labs were every week for the first month and then would have been on a wider schedule.

I wouldn't do it without the frequent labs, hopefully that was just a miscommunication with the GI.

 

[my little penguin]

Ds had elevated liver enzymes (ast/alt ) with 6-mp
He started the med -and two months later the liver numbers were up .
Gi lowered the dose and added allopurinol but we never could find a balance to get to therapuetic levels without his liver nunbers going up so we had to switch to Mtx .

 

[jeteyetaylor]

I am assuming the TMPT is the test to see if body metabolizes correctly? If so, then yes he was within the normal range. The gi doc nurse said that since he was within normal we wouldn't have to re-do blood work for 3 months. I don't agree after reading the above links. I am having his PCP do bloodwork for weekly check until we get up with new gi doc at Childrens Mercy in Kansas City.

 

[jeteyetaylor]

Sorry I keep asking so much, but I see some are on Folic acid, vit D, B12. Did your doc recommend these supplements?

 

[crohnsinct]

Folic acid is a supplement typically taken with Methotrexate as MTX is a folate antagonist.

IBDers are usually low in certain vitamins and minerals due to malabsorption. Vit D is the biggie. Vit D is VERY important to intestinal health and has many studies doneon it so GI's check that every so often and request supplementation.

B12 is the new Vit D. It is getting a lot of press and many Americans are low on that as well. O's doc doesn't monitor it yet but I have requested it be checked from time to time. She is fine but go figure I (non IBD) am chronically low so I supplement.

 

[DustyKat]

With supplementation the majority are for deficiencies and as cic has said Folic Acid is used also due to the depleting effects of Methotrexate.

I personally am not a fan of multivitamins and only believe in supplementing to deficiencies as evidenced by monitoring. That said I also have views as to what is optimal for those with Crohn’s and at what levels they should be maintained. These levels are often far above what is normal in the general population but still within normal reference ranges.

The other thing to bear in mind is that most deficiencies occur in Crohn’s, as opposed to UC, and more particularly in Crohn’s that affects the small bowel.

Dusty. xxx

 

[my little penguin]

Tagging Brian'smom
I think her kiddo used to go to Kansas- children's mercy
Hopefully she can give some advice

 

[Brian'sMom]

We still go to Children's Mercy.. But my son's case has gone above the expertise here in KC so we travel to Mayo in Minnesota. We have our appts here and he gets his Vedo here, but then they confer with our GI at Mayo. For him to agree to take the lead we agreed to travel the 6hrs north when he needed to see our son. The GI's here are happy and have encouraged having the Mayo GI on our team. So I do respect Children's Mercy for this. I do believe they are a good clinic. My son has just been refractory in treatment. Feel free to PM me if you have any detailed questions.