Sons story

[Dman7543]

Worried Parent

Hello, I'm new to this forum and just would like to know what other people's stories are and see if i can get some advice. So my son is 15 years old. He had been having symptoms since he was about 13. He had an urge to go to the bathroom right after or even during meals. He also had diarrhea and long and often bowel movements. About a month ago he had a bowel obstruction which corrected itself on it's own. He had an endoscopy and a colonoscopy last month as directed by his GI Doctor. He was diagnosed with crohns disease. His father also has a severe case so i know what it is like. My heart aches for him because it affects his quality of life because he sometimes doesn't want to go out with his friends because he is afraid he may have to go to the bathroom. He has had numerous blood tests and they are beginning to take a toll on him. He is fifteen and around five foot three and 112 lbs. He is very active and plays football and basketball. HE is currently on Budesonide three times a day, but the GI doctor wants to put him on 6MP and remicade infusions because it has had affects on his growth, and she wants to get it in remission so things can start moving along. I am very worried that the pairing of those two drugs will have a bad affect on him, but i want him to get better so he can catch up to his friends. Does anyone think those two drugs together will have any negative affects on him? Will it correct his problems?

 

[jmckinley]

Hi and welcome. I am sorry that you have need to find us, but glad you are here. You will definitely find someone on here that has a similar story and can provide some advice and support. I am assuming your son is having a hard time right now, that's usually when we find this forum.

I have a son also, 15, diagnosed with Crohn's in 2009 at age 12. We maintained remission for about 2 years on 6mp, but it flared back up about a year ago. It has taken a year, but we have recently gotten things back under control. (knock on wood). Couldn't have survived the year without the forum!

Tell us more about your son and maybe we can suggest who might have a similar story.

 

[Clash]

Welcome to the forum, so sorry you had a need to seek us out. Feel free to tell us your son's story as most of the kids on the forum have the same disease but very different presentations, depending on severity of disease, location of the disease and various other factors.

My son, 16, was diagnosed this year, and it has been quite the roller coaster, fingers crossed we are on the right track to remission now.

 

[Dman7543]

Thank you. So my son is 15 years old. He had been having symptoms since he was about 13. He had an urge to go to the bathroom right after or even during meals. He also had diarrhea and long and often bowel movements. About a month ago he had a bowel obstruction which corrected itself on it's own. He had an endoscopy and a colonoscopy last month as directed by his GI Doctor. He was diagnosed with crohns disease. His father also has a severe case so i know what it is like. My heart aches for him because it affects his quality of life because he sometimes doesn't want to go out with his friends because he is afraid he may have to go to the bathroom. He has had numerous blood tests and they are beginning to take a toll on him. He is fifteen and around five foot three and 112 lbs. He is very active and plays football and basketball. HE is currently on Budesonide three times a day, but the GI doctor wants to put him on 6MP and remicade infusions because it has had affects on his growth, and she wants to get it in remission so things can start moving along. I am very worried that the pairing of those two drugs will have a bad affect on him, but i want him to get better so he can catch up to his friends. Does anyone think those two drugs together will have any negative affects on him? Will it correct his problems?

 

[Clash]

My son was also diagnosed at 15 we went on prednisone while we waited for the Remicade approval. My son was 5'5 and right at 100lbs at the time of diagnosis. The pred made him gain some weight and alot of that came back off after we tapered the pred. His symptoms were night fevers, severe mouth ulcers, and abdominal pain, he was usually constipated but would have some days of D.

The Remicade worked immediately to resolve all of his symptoms but once we got past the loading doses he couldn't make it between infusions before a flare would start again. So we had to shorten his dose schedule to every six weeks and add methotrexate(an immunosuppresant but not in the thioprine class like 6MP/Imuran). We just got his latest blood work and all looks well. He hasn't had any symptoms this time around and is schedule for his 6 week infusion this upcoming Monday.

Our doctor chose MTX over 6MP or Imuran but I'm not sure now whether there is any advantage or if there is a lower risk of negative effects. It was believed that it was better than the 6MP or Imuran with Remicade but newer studies have also included the MTX/Remicade combo in the risk category.

For us, even though the decision is scary when you read all the liturature, we felt that the benefit/QOL gained on this combo out weighed the small risk. So far so good as far as getting him on track to deep remission and we are keeping our fingers crossed that the huge improvement we have seen will continue. He is now 5'7 and 110 lbs. Still skinny but he is gaining weight, eating good and enjoying eating because there is no pain. The GI feels that with the healing of inflammation in his TI and deep remission which includes mucosal healing(which remicade is good at) he will gain weight and height at a more normal rate and hopefully catch up by the time growth stops.

I hope you are able to find remission for your son with whatever treament you choose.

 

[kimmidwife]

Hi! Welcome to the forum. Sorry you had to find us but glad you have. I was wondering why your doctor suggested both drugs right off the bat without giving just one a try first. I think the majority of kids on here have started with one medication and only if that did not work added a second one. Are you in the USA? I know there are different treatment approaches depending on where you live. I would suggest asking your doctor about the option of starting with one medication first especially if you are worried about the possible side effects from the combination treatment. Find out his reasons for wanting to be so aggressive and starting with two drugs at once. The thing with IBD is it is so different for every person with it and each case is so individualized that it can take time to find the right treatment for your son's case and a few different ones may need to be tried before you find the right one. Please keep us posted.

 

[DustyKat]

Hi Dman7543 and :welcome:

I am so very sorry to hear about your lad...:hug:...what a difficult and heartbreaking time for you all.

I have not had any experience with Remicade, only Imuran on it's own. As you know, the need to get your boy into remission is paramount, for his growth and development, for his quality of life and for his overall well being. As much as we fear and hate the drugs the worst of the side effects of them are rare whereas the worst side effects of the disease if left untreated or under treated are not rare enough. :voodoo:

It is difficult to say how he will respond or if he will have problems, it may be that he responds wonderfully well, it may be that tweaking that needs to be done or it may not the drug for him but you won't know if you don't try.
Having said that there are many parent's here that have found Remicade alone or in combination with another drug to work beautifully for their child and for the first time in a long time they can breath again and rejoice in the good times.

Perhaps you can look into other treatments to use in combination with the medications to assist in his recovery. I am thinking of some Enteral Nutrition here as a way of boosting his nutrition and therefore help with his growth and weight.

Good luck Mum and keep us posted with how you are both getting on.

Dusty. xxx