18 year old son recently diagnosed

[onedayatatime]

Hi - my 18 year old son was just diagnosed in April. Outside of being a bit lethargic and anemic he was symptom free - until the stricture at his terminal ileum (unknown to any of us) created a blockage. This happened three times - each one week apart. On the third time the doctor ordered the CT scan and there it was. Hi - your son has Crohn's - the GI will see you next week.

Over the past 8 weeks he had 3 colonoscopies and the stricture was dilated each time. That went well, but unfortunately the inflammation is not gone. He has been on asacol, prednisone and azathioprine - which scared me half to death. I fought night and day to get a referral to the research hospital nearest us which has a great IBD clinic. We had our appointment last week and I do feel that the specialist knows what is going on! Prior to our appointment (by accident) I had found several papers that she has published. It gave me some confidence that she is current on the latest developments.

They are recommending he go on remicade which we have reluctantly agreed to. Our local GI wants to put him on remicade with aza but I just can't do it - since he is a young male - the recent cancer information is too much for me. The specialist indicated that they do not put young males on remicade with aza but they pair the remicade with a low dose (7.5 mg) of methotrexate. This seems like another scarey drug, but she insists it does not have the cancer link that the other combination has. I do know the remicade risks too.

He is set to leave for college in September, so we are doing everything we can to get him as healthy as possible. We already have a GI down in his college town that will work with the specialist we have. Not at all what I envisioned when we were making the college plans! Life certainly throws curve balls and this one about knocked me out.

I would very much like to find out if anyone else has experience with remicade and methotrexate.

I have been reading all your stories since the day we came home from the scan. I am inspired and amazed by what you have all been through. My husband and I will certainly be taking part in the CCFA walk next May!

 

[DustyKat]

Hi and :welcome:

I'm so sorry you had to find your way......but on the upside it is great place for support and info!

If you haven't already found your way there take a look at the Remicade Club and the Parent's Forum.

I know there are others here that are on combinations with their biologics so have a browse through the forums and if you have any questions please don't hesitate to ask. Also be sure make use of the search function. Crohn's Mom has daughter that will be starting college this year as well.

I hear you about the meds, we all do! You are not alone Mum in your fears and worries in everything this disease throws at our precious children, yet somehow they all seem to have an inner strength and resolve that never ceases to amaze and inspire us.

It's so good to hear all went well with the appointment and that you have faith in your son's new GI, that is an invaluable thing to have. Many GI's now go with the Top down as opposed to the step up approach these days. I hope that the Remicade combo works well for son and he finds himself in many, many years of remission and good health.

Good luck and welcome aboard!

Take care, :hug:
Dusty. xxx

 

[jordan29]

Hi onedayatatime welcome to this forum its an amazing forum we only joined this month when my son jordan age 15 was dx with crones and it has really helped reading all about how it affects people in diffrent ways jordan is currently on 40mg a day pred and 7.5mg azathioprine per day touch wood jordan hasnt had any nasty side affects and is doing good i was like you it nearly scared me to death but seeing jordan pain free and not sitting in the bathroom most of the day is a big plus i always thought life got easier when our kids grew up by god it doesnt try and find some time to read some of dustys posts and crones mom they have been very interesting and helpful to me tell your son good luck when he starts college in september x

 

[Tesscorm]

Hi, am also a new member, my 16 yr old son was diagnosed in May. He had very general symptoms as well - lethargic, fever, diarrhea - few days on, then better for a week or two, then back to the tiredness, etc. However, while the testing was going on, he was anemic and did lose approx. 15 lbs. until he was finally diagnosed. He is currently on a liquid diet for six weeks with no medication (other than antacid).

The medications are scary and have me worried sick but, what can we do? No parent wants to see their child suffer nor have the disease worsen. My son's follow-up apptmt is later this week and then we'll find out what our next steps are.

Like you, I feel this has definitely knocked me down! However, I have found that the stories and advise you'll find on this site are invaluable! Not only the guidance and advice but also to see that other people (kids and parents) deal with the setbacks and come back from them!

Good luck.