Son just diagnosed with Crohn's :(

[Dearie]

After posting this thread under a different forum it was suggested that I check out his forum of Parents of kids with IBD so here goes my original post again...

I've been checking out this forum for a few days now and just decided to join because I love the support and information available! Still not sure how to fully use the site yet, but I'm sure I'll get the hang of it soon. Thanks to everyone for sharing!!!!

My 9 year old son was just diagnosed Crohn's last month after having a few bouts of vomiting, weight loss and a couple months of a progressive decrease of his usual energy level. He also had a history of surgery of an anal fistula at age 5 but wasn't diagnosed with Crohn's at the time. Now after almost a month of Pentasa, a week coarse of antibiotics, Prilosec, Ensure 3x a day, an iron supplement and lots of prayer he is feeling great, gaining weight, and experiencing no active symptoms...

......But, he has his first follow up visit with his GI doc on the 24th and I want to know if there are any suggestions of topics I should be sure to bring up at this visit because this is all so new to me and I would love to keep him in remission as long as possible. After his diagnostic colonoscopy his doctor recommended we start Azathioprine in order to keep him in remission, I am very reluctant to start him on this because of the side effects. I would love to hear of other treatment options that have worked for others that may work for him. Also, is there any other helpful information I should make sure to inquire about to help us along this journey ?

Again, thanks for sharing

 

[Catherine]

There are many other options and sure others will suggest them soon. My sarah was dx in january she is much older at 16.

If I had found this site early I may have asked about other options too.

Now questions, how severe is the crohn's and where is it located.
levels for b12, D, folate, iron levels.

Make sure sure the blood tests for aza is done for starting aza. Sorry I have.forgotten the name of test. I sure other will let you know the name.

 

[izzi'smom]

Hi, and welcome!
I am glad that he is doing better already-hoping that it lasts a lifetime! Have you checked out the treatment forum? There is a "sticky" at the top of each drug thread describing them...a good place to start!
We are no help...all of our treatments have failed thus far-but hoping others will chime in !

 

[Dearie]

Thank you both for your reply.
I will be sure to inquire about those blood tests at his appointment and yes his Dr. has already done the blood test for starting the Aza.
I will definitely check out the treatment forum and I will continue to post what's working and what's not working for us. ~ Thanks

"If confusion is the first step to knowledge, I must be a genius."~ Larry Leissner

 

[momoftwinboys]

Welcome to the forum. My son is ten and dx last fall. He is on azathiophine and more of less, so far so good...Knock on wood. We attended a seminar given by ccfa and our childrens hospital in December that put the risks/rewards of the treatment into perspective for me. There are many different approaches and seems Crohns symptoms/treatment results vary for each person.
I would recommend getting vitamin/mineral testing as well. Since our boys still have alot of growing up to do.
See you are in VA Beach. Boys grandparents live there and we visit every summer. Love it there.

 

[Twiggy930]

Hi and welcome to the forum.

My son is 10 and was diagnosed in February. We are still struggling to get him into remission. At the moment he is tapering prednisone and on exclusive EN. He is also taking azathioprine but we still have a month to go before we can expect to see any results. So far he doesn't seem to have any side effects from the azathioprine.

Glad to hear your son has recovered so quickly. I completely understand not wanting to put your son on azathioprine. For myself cold hard unemotional statistics are what I used to make the decision. Somewhere Dusty has a great link to a talk about the risks versus the benefits, I will look for it. I do think that the decision to put my son on this medication was also made easier by the severity of his symptoms, if he had been mostly well it would surely have been harder to come to terms with taking such a drug.

I hope that your son continues to feel well for long, long time.

 

[imaboveitall]

Another dx around age ten..wow.

Welcome and sorry you're here :rosette2:
My Violet was dx at age ten, very sick and sudden onset.
She was promptly placed on enteral nutrition (no food restriction) and responded dramatically and thence had 3 symptom and DRUG FREE years.
So of course I'll suggest you investigate EN as either an alternative treatment or adjunctive.

She started having weakness/no stamina in Oct 11 and we ended up trialing Humira, no improvement in symptoms though there was improvement in stool labs.
We just stopped Humira and will be starting naltrexone in two weeks.
A short pred course (six days) did wonders, she is now symptom free again.

Just to give you some ideas and to illustrate that there are many ways to skin this cat. :cat:

 

[Dearie]

So much helpful information. Thanks to all.

We are currently awaiting results of the Prometheus prognostic test which may be able to indicate how severe the disease may become for him and supposed to help decide if Aza is definitely the route we should take. Not sure of the accuracy of this test though?.? But, not much seems certain when it comes to the details of this disease.

Anyway, praying that we are all able to find lifelong remission.

And, yes we are in Virginia Beach, my son has asked about meeting other kids his age with Crohn's and we plan to look into finding some local support groups with kids his age.

 

[imaboveitall]

Dearie, V's amazing saintlike doc has three offices and travels between them, the closest one to you is Lynchburg so if you don't have docs you like over there, PM me and I can give you his name. He goes way above and beyond and has tons of compassion and respect for parents and patients and defers to our opinions even when he disagrees.

 

[Jenn]

Not much advice to give, just wanted to welcome you to the board. Check out the CCFA site for a comprehensive list of meds. The disease is so individual, so it's hard to say what will work best for your son, now and in the future (so frustrating!). There's lots to learn and keep a list of questions for your GI as you think of them. Best of luck you find something that works quickly and remains successful!

 

[DustyKat]

Hi Dearie and :welcome:

I'm so sorry to hear about your boy...:hug:...but fab to hear he is doing so well!

The link Twiggy is referring to is this...

http://www.ccfa.org/webcasts/Risk%20and%20BenefitsTranscript.pdf Thanks Brian's Mom!

We have a list of questions in the wiki, you may already know some of the answers to these but it may be a good starting point for you...

-What is my diagnosis?
-Where is the disease active?
-What form does the disease take (inflammation, ulcers, fistulas)?
-How severe would you say my disease was?
-What symptoms do I need to report immediately to you, which can wait until my scheduled appointment, and which signify an emergency?
-What treatment options are open to me?
-What does (treatment) do? What side effects should I be aware of?
-How long before I should see an improvement?
-Do I need to take any nutritional supplements such as b12 or iron?

I would also add what others have suggested...plus, if he is doing so well on his current treatment and it is supported by clinical indicators why do we need to go to Azathioprine?

Both of my children are on Azathioprine and have not suffered with side effects, touch wood!

Good luck with the appointment and i hope your boy continues to do wonderfully well!

Dusty. xxx

 

[Dexky]

Welcome Dearie! My son's first maintenance med was 6mp/aza. It seems a fairly standard first choice. He was on it over a year w/o any negative effects. Good luck!