Having a hard time today

My 11 year old was diagnosed with Crohn Disease in April 2014.
RX: Balsalazide 750MG
Prednisone: 40MG

Now the doctor is wanting to start her on Azathioprine 50MG. The side effects are horrible on this drug, which includes cancer in teenagers that is fatal. Her grandma just died of cancer and we never want to go through that again. I've been crying all morning. I want whats best for her but I'm not quite sure what that is. Any help would be great. Experiences. I'm really lost.

Holly

So sorry to hear you are going through this with your child; one feels the need to "do something", even though there's not much you CAN do!

One option might be to collect the records from her current GI doc and go to another doc for a second opinion. Even if the story goes unchanged, at least you know you covered all the bases. In my town, there are two huge GI practices. I think 99% of the GI docs work for one or the other, so that makes second opinions a bit limited for me unless I go out of town. Some other folks in my family have made a trek to the Mayo Clinic to address their health issues. They wanted a full re-analysis and I think it might have helped them. Good luck. <3

Hi Holly,
Have been exactly where you are so I am totally feeling for you! Sending you a big hug. The good news is though that the risk of cancer is small. One doctor explained to us you have a higher chance of being hit by a bus crossing the street statistically speaking. It definitely is scary though. There is an alternative to some of these drugs called low dose naltrexone. Most doctors won't tell you about it because the studies done on it are small. See the drug is generic and has been for many years which means there is no money behind it to encourage testing. There is a lot of info on it under the treatment section. For us personally it has been our miracle. Nothing else worked. If you decide to try it just be warned you will probably have to convince your doctor. If they say yes it also has to be compounded. Find a local compounding pharmacy or you can use skips pharmacy in Boca Raton Florida and they will mail it to you. Good luck and keep us posted!

Sorry to hear about your loss. The side effects of 6-mp , AzA etc are scary but so are the possible side effects on Tylenol .
You have to remember these are possible side effects where the docs view the benefits of the med far outweigh the tiny risk of a potential side effect.

I like to look at numbers
The risk of dying if your under 14 in the US
In a car 1 in 250
Drowning 1 in 1000
From tcell lymphoma without every having immunosuppressants or Ibd 2 in 10000
Tcell lymphoma from immunosuppresants 4 in 10000

6-mp and Aza have been around a very long time and do have a good safety record for Ibd kids.
Keep in mind under treated or un treated Ibd increases your risk of cancer as well.
Not saying the choices are easy or clear but once you find the drug that works for your child things are much easier.
I do say find the drug since most kids have a more severe disease course than adults and the latest studies show the course of the disease can be changed if biologics are introduced very early ( within 3 months of dx) . This can reduce the likelyhood of needing surgery .

Good luck

Hi Holly,

I haven't been on this site in a good while but your post caught my eye. I was dx Crohn's age 11 nearly 28 years ago. I can fully understand your concerns about Azathioprine, I was on it for over 5 years in my early 20's. A very long story I got off it and have maintained a fair level of health back on mesalazine with a good diet, not strict by any means but more controlled and regular eating.
What I really want to say is keep hope, my poor parents went grey with worry at a time when crohns was unheard of and there was no internet, they watched me struggle, but they also watched me manage and they watched me succeed and now they are grandparents to my beautiful daughters.

Research heavily, read every article, don't be afraid to ask hundreds of questions, don't be afraid to say NO to doctors until you are happy with their plans as 7vNH said go for a second opinion if you want to. All the things my parents and I have done over the years.

Also get your 11 year old involved in keeping a very detailed daily diary, listing all the food they eat or drink, all their bathroom visits, their sleep patterns, stress levels this will help you to identify a possible trigger. I did this and to my amazement I discovered that one of my triggers was the fat my mum used for her roasting, now I only use olive or sunflower oil.

If you any questions please feel free to ask.
Gwen xxx

So sorry Holly, we all know that feeling so well and yes it's scary to hear all the risks and to think about all these scary drugs when really all you want is to make her better.
Here's what helped me. There are potential side effects/risks with every drug even tylenol. There are risks in everyday life yet I let my children get in a car, play sports, etc. because the quality of life far outweighs the risk.
The risk is very minimal my little penguin has the stats on it. There is a cancer risk for untreated/undertreated Crohns, as well as a risk for severe complications.
Trust me I know in the back of your mind is that little voice saying what if my child is that 1.. In the end you have to make the best decision for your child and family but to see your child healthy and happy and doing what he enjoys because the medicine is keeping things under control is a gift.
I wish you all the best and please keep us posted ask any questions, vent any feelings. I guarantee you we've been there.
BIG HUGS!

Hi Holly,

I was scared too. To the point that I refused starting Azathioprine and as a result of my fear, my son paid the price and ended up having a small bowel resection at age 12. I completely regret not getting him Aza.

As it turns out, five months after surgery, he flared again and had to start Azathioprine. He had no choice. His Crohn's was out of control and we had to do something. Another five months later, he flared yet again on Aza. Turns out Aza wasn't even strong enough for him and he had to move on to Remicade. He's finally in remission.

One thing we like to say around here is that the meds all look scary, until you see them working well for your child. Then the meds are like a basket of kittens.

You do have the option of a second and third opinion, but I'm guessing they're all going to say try the Aza or even jump directly to Remicade. Whatever you choose, keep in mind that puberty is right around the corner and you're really going to want her disease under control before then. Many of us here are dealing with delayed puberty issues. Aza can take 3-6 months before reaching therapeutic levels... so that could potentially take until she turns 12. I know it's a hard decision right now, but I'd advise making it soon.

Keep us posted...

Thank you for all the helpful information. This feels like the hardest decision in the work to make.

:ghug:

Yes, the most serious side effects of many of the IBD drugs are awful but unfortunately so are the serious side effects of Crohn’s.

I came to the drug side of things in the reverse manner to most, my daughter was undiagnosed and only received her diagnosis during emergency surgery. Therefore for us the medication route was not an option until after her diagnosis. I never want to go back to the place of seeing what untreated Crohn’s can do, it was horrendous and Sarah very nearly lost her life to it.

BUT you are not in that situation and so you have time on your side, the most important thing though is to get the disease under control and your lass into remission as soon as possible and in doing so minimise damage and the need for surgery. Once you do that then you can sit down, take a breath and see what other options may be out there to help you keep your daughter as healthy as possible and maintain that remission. Those options may include one or a combination of the following: a lessening of medication, a change of medication, diet, supplements, exercise or something else you happen upon.

As you read and become more familiar with the disease and how it presents and affects your daughter you will learn and grow and will no doubt change your thinking about the many facets of this disease.

Talk with the GI and ask him/her why he wants her moved to Azathioprine. I can see why he does…Prednisone is not a long term drug and you need to be moved off it and onto something that is steroid sparing. Balsalazide is a very mild drug that isn’t very effective for Crohn’s, so couple those things with the fact that children tend to have a more severe presentation than adults and that means the GI is naturally looking for a maintenance medication that will keep the Crohn’s in check over the longer term.

My two are on Azathioprine and have been so for 8 years and 3.5 years respectively with no issues or side effects. It has helped them retain remission and in doing so they are living life to the full and I even forget at times that they have Crohn’s! :eek2: :lol: That is how good it can be mum. :ghug: Oh and my daughter has been on it since she was 14 and my son since 17.

Good luck hun, I know, as we all do, how bloody hard and heartbreaking these decisions are. What we wouldn’t give to take it away from our babies and make it our own, ay? :heart:

Dusty. xxx

Hi Hollym and welcome. I can understand all your concerns - I went through the same emotions. My daughter was diagnosed in December, just after turning 10. She began Imuran right before the new year and we began to see results around he 6 week mark. She is putting weight back on (a little faster than I would like -ha!) and back to her happy self! I know it's scary, but give it time and you will feel much better. We are all here for you in good times and bad.

:hug: we've all been there.

If you had told me a year and a half ago that my Grace would be on all these medicines,
I would have been rocking in the corner and crying.

All I want is a good quality of life for her. :kiss:
She's not in remission yet but I hope and pray she will be soon.

It will get easier and we'll be here to support you when ever needed.

You have been given lots of good advice in the above posts. I just wanted to say, welcome here. Once you get a chance to look around on this forum, I think You'll feel better about the azathioprine. Try not to google much. I did that in the beginning and it made me nuts. They have to list the side effects... but any GI will tell you how small they are. And crohns kids are watched so closely with labs and tests to make sure they are right on top of everything. The crohns has much worse side effects if left untreated.

Hang in there... Lots of hugs. Know you are not alone

Thank you so much everyone. Your information and stories are so helpful. We started Prednisone yesterday. Made her feel so shaky she came home from school. Today has been much better. She is having some relief from it. I guess it's going to be a process of learning and adjusting to her new life of diet, medication, and blood work, stool samples.

Is it normal to have 2 colonoscopy's a year? Is that about standard?

Thanks bunches!!!

Holly

Savanah 11 years old
Prednisone 40mg
Balsalazide 75 mg
Posture D 2x daily
Iron
Prenatal vitamin 1x day
2-Ensures daily

Scopes will vary by doctor and by disease activity. Up until this year (remission), my son was having scopes once a year, but they were, coincidentally, always triggered by a flare up at the time.

WE had one a year but- that was when DS was no t stable yet.

One thing you may want to consider is setting up a 504 plan with school to accommodate for everything from frequent bathroom trips to even working with the school counselor. Our son's school has been so supportive and has helped him through a rough school year.

Hi Holly, we are in about the same place. My son, age 13, was just diagnosed too. He has been on Prednisone for two weeks and it has made a huge difference. All symptoms are gone and he actually wants to eat for the first time in years. We are getting ready to start 6mp. The drugs are scary but I trust my doctors and the experiences that I read here. Seems if we can get on top of things our children will be healthier.

Anyways, sorry for your daughter's diagnosis. Looking forward to having others to go through this experience with.

I am very happy to have you all in my life. This experience has been rough. 2 days of feeling good for her on the Prednisone!!! So happy! I found a dairy free/Gluten free coconut ice cream that agrees with my daughter. It was so good to see her eat something like that again. Baby steps I guess? Thanks everyone.

Hi Hollym, we are in a similar situation. Our GI wants my 15 year old on 100mg Azathioprine but it's currently on hold until he's had a couple of vaccinations. I've had many sleepless nights wondering how I'd ever forgive myself if he were to develop lymphoma but reading about other people's experiences on this website has helped me greatly. x

Hi Hollym,

We have just started AZA 75mg and we are weaning off the pred. So far so good, Nick did very well on steroids and if I didn't know better I would of just kept him on them. Unfortunately he became dependant and weaning just 2.5mg caused all his symptoms to return. We are now down to 12.5mg from being stuck at 20 for months.

I want my level headed boy back, I want his emotions to be under control, I want him to be able to settle down and relax and not go from manic to exhausted in the matter of 20 mins and I want him to lose his moon face that makes him feel bad about himself. I also want him to be like every one else, to have fun and energy and be carefree, to grow and hit puberty to not have stomach ache and joints that feel like they belong to an 80year old. If AZA or Remicadee can help him get there then that's what I am going to do, life is short and I want him to have the best possible quality he can have.

It's taken me about 6 months to come to terms with this and it was AWFUL to have to make that decision on behalf of our loved ones. I couldn't of made peace with this if I hadn't had the support of all the wonderful people on the forum, their experience and compassion is second to none!
Please know it is completely normal to be feeling the way you are and you will find a comfortable solution that works for you both, until then I am sending you lots of hugs.
Jane

Hi Holly, Welcome to the forum but sorry about your girl's dx. My son was dx'd last yet at age 8. To answer your question, he had a colonoscopy at dx, and is due for one this summer, at 18 mos. Take care and hang in there!

My daughter had colomscopes about 18 months apart

DD had two mri within 10 months, the 2th showed enought that a repeat colonscopy was not done at that time.

Hi and welcome. Hope things continue to get a bit better every day. My son is on 6mp as he couldn't tolerate the Aza, that's him on it just over a year and doing well. Meds are scary - it took me 6 months to be convinced he had to go on them and he ended up with an abscess an fistula. As for colonoscopies, my son only ever had one at diagnosis. All docs are different.