Newly diagnosed 13 yr old

[keresa1945]

My son was recently diagnosed with crohns in esophagus and stomach, I opted out of the remicade and chose the aziothrprine (imuran) along with prednisone, he was feeling better but sometimes switches back to pain episodes. Has anyone else tried it, if so what were your results?

 

[Clash]

Sorry I don't have any advice as my son went straight to Remicade but there are several parents on here who have kids that have tried or are on Imuran and I'm sure they will be by shortly with some advice or experience. Hope your son is in remission soon!!!

 

[keresa1945]

Thank you and i will anxiously be awaiting their response

 

[Clash]

You may want to read through the threads for Imuran on our treatment sub forum. If you click on the highlighted word "Imuran" in my above post it will take you to our wiki forum where you will find info about the med and also threads posted about other peoples' experience with Imuran. Or you can just click on the treatment forum from the main page.

 

[Earnellzwifey]

Sorry to hear about your son, but welcome to the best CD family around. :welcome:

Like others have mentioned this forum is full of great information on treatment options as well as how it has effect people. I know it is different for everyone but it still might be able to give you some incite about options.

Just curious, when you say that he has it only in his esophagus and stomach doe that mean his colonoscopy was completely normal or have they done one on him yet?

 

[Sascot]

Sorry to hear about your son. Welcome to the forum. Sorry no advice on Imuran - we are currently unmedicated and I am putting my head in the sand until the nurses phone me and try to get Andrew on the 6mp again!

 

[Twiggy930]

:welcome:

Sorry to hear about your son's diagnosis. My son is 11 and was diagnosed in February. He has been on Imuran (azathioprine) and Prevacid ever since. Like your son, he also did a course of prednisone to get the symptoms under control quickly. Many of my son's symptoms improved quickly with the prednisone but the Imuran definitely took a good 3 months to fully work. He has had no side effects from the Imuran.

Given that your son's Crohn's is in his esophagus and stomach has he been put on a proton pump inhibitor? My son had significant symptoms in his esophagus and was put on Prevacid.

What sort of pain is your son having? My son has had on going problems with pain but it now looks like that may be due to other causes as the Imuran has been effective at controlling his Crohn's.

:hang: it is so hard to wait for these drugs to work!!!

 

[my little penguin]

DS has crohns in his esophagus , stomach, duodendum , terminal ileum , ceacum, and now rectum.
He started on pentasa but quickly moved to 6-mp and en.
Later he added pred.
No real side effects make sure he gets regular blood draws to check for alt and ast levels in his liver.
DS is now on Remicade since that wasn't working well enough

 

[my little penguin]

Look at EN as an extra it really helps

 

[Ams-Qld]

Hi! Sorry to hear about your son. My son is almost 13 and was dx two years ago. He was placed on 50mg Imuran and 50mg pred immediately. He only weighed 36kg at the time and is very tall (I think that's about 80 pounds?). The Imuran takes a fair while to work, at least 3 to 4 months, I have even heard up to 6. The pred is meant to stop the inflamation in it's tracks while the Imuran has time to take effect. Unfortunately my son is allergic to pred and had severe side affects and so we could only take for about a month before we had to taper unless we were prepared to hospitalise him. But by that time he was getting significant, though not total, relief from his Crohn's symptoms.
Can I ask how much your son weighs and how tall he is? Also how long has he been on meds and what is his dosage? Do you have him on supplements? What are his symptoms now?
Please feel free to private message me. I have definately been down this path with a boy of similiar age and am right there with you. Glad you found the forum. There are heaps of great people, with good advice and encouragement to boot!!
Blessings,
Ams xo

 

[keresa1945]

@earnellzwifey his colonoscopy turn mild irritation in colon, but the granulomas were found in stomach and esophagus, but later will do a camera pill to check small intestine

 

[keresa1945]

@twiggy no he does not have a protons pump inhibitor, he is hurting in his side near ribs, and feeling sharp pains in limbs. I will ask doctors about the prevacid. I will try yo wait patiently on progression of medicine

 

[keresa1945]

@aol-qld I don't mind saying it on here that's y I got on to get advice from those in similar situations. Before he got Dick he weighed 82lbs, he lost 12lbs throughout the testing, he is 5'3". He just been on medicine for about 2-3weeks. He is on iron for. His anemia and multivitamins. They caught it very early, he hes nausea, stomach pain, diahrea, pains in different places. I'm just trying to see if it being caused by medicine orvyhe disease or something intirely different. Thanx Alot

 

[Ams-Qld]

Hey Keresa, yeah unfortunately the meds (especially Imuran) take a while. How much Imuran and pred is he on? I think sometimes they have been quite ill for a while and so we don't notice them getting better until there is very significant change, hang in there you are doing all you can and it is not easy going!! We have had no problems with Imuran (make sure they keep an eye on his blood results though to make sure his liver is coping ok). Pred can cause lots of yucky symptoms for some people, but it is good at controlling inflamation. Hopefully you will start seeing improvement really soon!! (btw my reason for asking re weight/height is that usually imuran dosage is weight related and pred symptoms can be worse the stronger the dose and the smaller the person!!) Feel free to chat. Ams xo

 

[Ams-Qld]

Hey Twiggy930, great to meet some other parents with pre-teen/teen boys!! And my little penguin, how old is you son and where do you guys live? Has been so great to talk to others going through the same stuff!!! Wish we lived closer!! So glad Keresa that you have found your way here, wish I found it sooner!!

 

[David]

Hi Keresa,

I'm so sorry to hear about your son That must be so rough, my heart goes out to all of you.

*hugs*

I second the enteral nutrition suggestion. Please be sure to research it (read this thread to start) and discuss it with your doctor. I like the PPI suggestion as well.

The pain in his limbs. Did that start after he began the Azathioprine? And is it just in his hands and feet or legs and arms as well?

 

[Lewiss mum]

Hi just wanted to say hi and welcome I'm a new by to my son Lewis is 5 he was officially diagnosed last week but we new he had it some time ago were waiting on remicade to start , hope you find support and lots of great advice on the site we have and weve made some big decisions on Lewis treatment from the support and advice on here . Maybe in the future we.ll be the ones given advice .xxx

 

[DustyKat]

Hi keresa and :welcome:

I am so very sorry to hear about your lad. :hug:

You have been given loads of fab advice so just wanted to welcome you to the forum and say that you have found a fab place for info and support.

My son started out on Pred and Imuran also. Unfortunately he quickly developed complications and long story short have ended up needing surgery. He did remain on the Imuran from the outset and continues with it to this day, so just short of two years now. He has not had any issues with it but as already said, just make sure that his bloods are monitored regularly.

Good luck and welcome aboard!

Dusty. xxx

 

[keresa1945]

@twiggy actually he is on a ppi, I didn't realize nexium was one, (still learning)

 

[momoftwinboys]

Welcome. My son was dx a year ago this week. He was put on pred and azathioprine. He did well until about a month ago. He had his first remicade infusion today.
Hope your son enjoys remission shortly.

 

[jmckinley]

I am so sorry about your son's diagnosis, but welcome to the forum! My son is 15 and was dx 3 years ago. We have not had any experience with imuran. He took 6mp for 2 years until it became ineffective. Now he takes remicade.

Just wanted to say welcome and send hugs your way. I hope the imuran starts working soon!