New parent of UC child.

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Dutch941

Dutch941

Joined
Jan 18, 2012
Messages
217
Location
Syracuse,NY
Hi. My wife and I recently were thrown into the world of IBD. In December we noticed drastic changes in our 12 year old sons weight, bowel movements, and energy level. After 5 days in the ER we learned he has UC and because of his age they will not rule out Crohns. At this point it appears only his colon was affected...but it was a hot mess. :(
Currently He is on pentasa 500 mg. and tapering prednisone...down to 10 mg twice a day. We are now facing the start of 6mp. I'm assuming for life???
As I write this I feel like crying. I can't believe my 12 year old has to go through this. We are afraid to put him on 6 mp...yet equally afraid not to.
I look forward to any advice anyone on this board is kind enough to offer.
Thank you.
Dutch
 
Hello Dutch. Welcome to the forum.

My heart is absolutely breaking for you and your family. But it certainly sounds like your son is in good hands with such loving parents. :hug:

How was the diagnosis made? Did they do any biopsies? The best way to tell that it's UC and not CD is by biopsy. However, there have been cases where the mistake was made and the diagnosis was changed later on in life. Either way, the Pentasa, the prednisone, and the 6mp will treat both diseases.

I understand completely your fear of the big gun 6mp, but it seems to be a great treatment overall. Check out our sub-forum for 6mp for any questions you may have about it. I'm sure you have a lot of concerns. Here's a link for our Pentasa Sub-forum, too.

Once again, I am so sorry about the diagnosis, but glad that you've found out early on how to treat it. Please keep us posted.
 
Hi Jessi...thanks for your well wishes.
He was diagnosed by way of endoscopy and colonoscopy. A biopsy was also done and was "negative" for what Im not completely sure....
We were told that his condition was so visibly obvious that UC seems to be a strong likelihood as no other ulcers appeared elsewhere......but because he is 12 we have been told by the DR that Crohns cannot be ruled out and as you said..it doent matter since the treatment would be the same course.
It sure looks like 6MP is our next step..but I feel like Im skydiving and I have to jump out of this plane.........I know jumping is logical..but it still feels pretty scary. Once we jump we are in the air and cant get back in the plane.....does that make sense? Anyways.....I am awaiting a call from the DR so that i can once again annoy the bejesus out of him with questions. I suspect by days end we will have joined the 6mp community.
I will check out the other forums you suggested.....thank you again.
Dutch
 
That makes TOTAL sense! I'm skydiving, too. I'm on a biologic med called Remicade. I don't really understand the difference, to be honest, but I've heard that 6-mp is safer than Remicade. And hopefully, for the sake of your son, that's true.

He has his whole life ahead of him. I'm crossing my fingers that this will allow him a good quality of life.

I forgot to mention another Sub-forum here that you would probably appreciate. This one is for parents, like yourself, who have children with IBD. You are not alone. :hug:

I hope I'm not overwhelming you, but you're gonna be that way regardless.... I hope this helps you. Spend time reading and get to understand the disease and the treatments better. You'll soon feel comfortable with things ~ in a matter of speaking. ;)
 
Thanks. We have heard about remicade and are even more scared of that! Somewhere I read that it is every 9 weeks and that insurance doesn't cover it all....I heard horror stories about it costing 1200 after insurance! Not sure how true that all is.
 
Well, yes it's very expensive, but there are ways to help. I get mine for free without insurance. And people that have insurance can get it for like $5 when using the Remi-start program. Many people don't know about that, though. I get infusions every 8 weeks and just pay the nurse for the visit. (I get mine done at home, but everyone else I know of goes to a clinic or hospital.)

How much does 6-mp cost? Have you been educated on it yet? I hope it doesn't take too long getting it started.
 
Hi Dutch and welcome to the forum :hug: I am really sorry that your family is going through such a hard time but you have found the right place here for lots of help and support. Jessi has already covered the forums that would be ideal for you to have a look at so I am just sending my love and I hope your boy starts to feel better soon, please keep us updated on how things go.
 
Hi Dutch,

My son is 11 and I can completely relate to your story. Our heads were still spinning when we had to make the decision about 6mp. It is so much harder when you have to make this decision for your child when they are the ones who have to deal with the consequences. We did choose to do the 6mp. Knowing full well that it can cause lymphoma and this is especially true of young males with IBD. That being said (and I think you just have to stare that one in the face) it is a very small chance and the risks of other treatments or no treatment statistically are more likely to do harm. My Dr said that they monitor the white blood cell count very carefully and if it starts to go up they re evaluate. Also, that many of the cases of Lymphoma are people who have been on it many years and use it in conjunction with other biologics. They know a lot more about how to monitor the drug than they did when it first came out. I have not accepted that he has to be on 6mp forever. I am doing some research on LDN and I know there are a lot of new drugs coming for IBD. I feel like this is giving us time to research and evaluate our options. It is also a drug that has been around for more than 20 years for IBD so I feel pretty good about it's history. I will say that Johnny has had really no side effects, and our healthy happy boy (who is actually now growing and gaining weight) is back. I met with a mom last week whose son has a refractory case of crohn's and I realized how lucky I should feel that we have an option for medication and it seems to be working. I know this is devastating. I remember the day I gave Johnny his first pill and I wondered if it would be the last day of his life that he wasn't on medication. But seeing him feel good again has been such an encouragement. This is such a crucial time in their growth and development. I want him to be as healthy as possible to grow. I will say that we also prayed a lot about this decision.
I hope you don't mind me giving my opinion. There is no right or wrong and I am glad we are all willing to try different paths because we can learn from each other. (((Hugs))) to you and your beautiful boy. Hoping he is happy and healthy again soon! Don't hesitate to ask any questions, I am sure I left something out!

Tiffany
 
Thank you so much.....it does sound very similar to our case and we made the decision today to start the 6 mp tomorrow. Our doctor was very good about answering our littany of questions. I too hope that something better comes Along the way. This board seems very helpful so I will be updating as things take place. Thanks again.
Dutch
 
Oh I really hope this gets things sorted. Sending lots of hugs to you all :hug: By the way what is your sons name? How is he feeling about all this?
 
Welcome Dutch!! I remember when my son was put on 6mp. We too thought it was such a drastic measure. It kept him well for over a year but began to fail. By then, I was wishing he could stay on it for life. Every step of this journey feels like we're jumping out of that plane all over again!! The good thing about this forum is you don't have to be out there flailing alone:)

Tiffany (aka Johnnysmom) really hit the nail on the head! There is no right or wrong, only what's right for you and your son! Good luck!!

We have a parent's section here http://www.crohnsforum.com/forumdisplay.php?f=49
It's mostly moms over there and we(I) would love to have you aboard!
 
My sons name is Matt. I guess I need to figure out how to add that to all my posts...he's doing well T the moment while n prednisone...aside from the puffy cheeks. He's been acting pretty solid...basically just rolls with it and doesn't seem to be taking it to heavy. We're trying to conceal our anxiety so as not to scare him but we also don't hide the facts from him as this is something he obviously needs to adapt to.
 
The pred does give us a good moon face doesn't it :) Has Matt shown any interest in the forum at all? It is good that he becomes as aware as possible about his crohns so he can try and make the right desisions in the future (especially when it comes to things like diet etc).
 
No interest yet although I haven't shared this with him....I may seek out a forum for his needs later as we become more settled in. Also we believe he is UC only at this point. Although Crohns is not ruled out.
 
Hi Dutch and :welcome:

I'm so sorry to hear about your boy...:hug:

I so hear you about the meds, it is so hard to have to make these decisions on behalf of our children, as you say, we are scared to make the jump but equally scared not to. :(

I found myself in the same place as you over 5 years ago when my daughter was diagnosed. We had a slightly different journey, we nearly lost her, so at the time I grabbed with both hands whatever I could in an attempt to avoid ever going back to those dark again. She started Imuran and has now been remission, following surgery, since that time.
Then 12 months ago the nightmare started all over again with my son. Even with Sarah's positive outcome the decisions were no easier but again we chose the treatment and he is now also in remission following surgery...very much deja vu!

The decisions don't get any easier but the dark days won't always be with you, you will settle into in a normal and you will laugh again. I know it's too hard to see that now but it will happen. :)

Good luck to you and your boy, bless him, and keep us posted!

I look forward to seeing you around Dutch, :)
Dusty. xxx
 
My son has expressed interest in contacting other kids his age with UC or Crohns...does anyone know if there is a forum here especially for kids?
 
Just a quick update....6 mp going well so far......he's been taking it now for several weeks......he feels good......almost done with the prednisone.....he played his first game of hockey today since diagnosis in December.......he has been swimming on his school swim team and his labs have come back to pretty much normal......we did have a scare last week when a simple cold sent us to the doctors and as a precaution they requested blood tests.....while drawing blood he passed out and scared the bejesus out of me........this was alarming but he has fainted several times before as a younger child so I guess its not too abnormal.....and the blood test showed no issues so we are chalking it up to a road bump. Other than that we are just waiting to see how things go minus the steroid. Fingers crossed.
 
That's great news! It must be so encouraging to see him return to his sports :) As it has happened before I would hope the fainting was just down to him being slightly under the weather. What dose of pred has he managed to get down to?
 
Any fainting should be checked out. Look up prolonged QT syndrome and see if anything seems to fit. Johnny had to be checked out by a pediatric cardiologist. He fainted once during a blood test and the DR wasn't too concerned about that but did want to know if he fainted at all as a child before that. Prolonged QT is completely fixable but can be serious if it goes undetected. I don't want to freak you out at all and hopfully just reading about it you will know if it is even something that needs to be looked into further. Hope everything continues to go well with the 6mp. Tiffany
 
Woo-hoo! Almost done with the evil pill!

BTW, fainting is something I do when I get my infusions. It could be a magnesium deficiency. Another thought, it could be panic. Poor guy. :hug:
 

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