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Worried mum

After a year of my son being so unwell and loosing 58lbs , doc diagnosed him with agraphobia , finally he has just had an endoscopy and colonoscopy and now diagnosed with crohns he is 17 , hes on pred and started azathioprine and lots of vitamins , hes spent ten days in hospital on iv steroids , he is so much better but im scared that he goes back to feeling terrible after pred is stopped , i am angry that he was given the wrong diagnosis and would like some reasurance what to expect of the disease :strawberry:
 
Hi and welcome to the forum, sorry you're here on such crappy circumstances, but glad you've found it nonetheless because I'm sure you will find it invaluable in the coming years.

Also sorry it took a year to diagnose your son correctly, but these diseases can be very tricky to pinpoint and many people go years and years with no answers. My introduction to crohn's was pretty similar to his (same age, some of the same symptoms). I was going downhill pretty fast so they had to hit the disease hard with aggressive treatments right off the bat by starting me on Remicade almost as soon as I was diagnosed.

The only good advice I can give you at this point is to be well-informed on the most effective treatments and be your son's advocate to make sure he gets the best care possible. Don't be afraid to get second or third opinions if you feel your medical care isn't up to par. As much as we like to believe our doctors have our best interest at heart, at the end of the day, the only person you can depend on to make the right decisions is yourself.

On a positive note, it sounds like he is responding well to his medications so far and I hope he continues to do so! If you need anything at all, don't hesitate to ask.. we're all here for you! Best of luck!
 
Thats just awful that yr son was wrongly diagnosed. i have no experience with pred as my son who is 9 is on 6mp and salofalk and is doing good, touch wood. My husband was diagnosed with crohns also a few years back and he had lost an awful lot of weight before he was diagnosed, they put him on pred and pentasa for a while and thankfully when he came off the pred he was absolutely fine n has had no major flares and just continues now with his pentasa. I hope yr son is doing good and continues to do so. xx
 

David

Co-Founder
Location
Naples, Florida
Hi there and welcome :)

I'm so sorry to hear about your son's misdiagnosis and now his diagnosis of Crohn's. That's terrible and my heart goes out to all of you :(

The best piece of advice I can give you at this point is to connect with the other parents here in our Parents of Kids with IBD forum. They are an amazing bunch of people.

All my best to you and your entire family.
 
Hi Netty lou, sorry that you had to seek this forum out and that your son is dealing with CD but this is a great place to get advice and experiences from other posters! My son, 16, was diagnosed this year and was put on remicade straight away. He had a stint on pred while waiting for ped gi appt and remicade set up but it didn't alleviate symptoms or inflammation. The remicade has been great for him and stopped his symptoms in their tracks after the first loading dose. Although, we are still tweaking the dosing schedule for optimal treatment, I hope Remi holds out for him. I don't have any advice on the immunosuppressants(AZA, 6MP) but there are several other parents whose kiddos have been on one of the thioprines. I'm sure some of them will be along shortly with their experience with this med and advice on all things CD! I hope your son continues to feel better!
 
Thanx guys he appears to be doing good and putting back on steady weight , his appetite with the pred is great , i think chocolate flares it up , was wondering if he should get the flu shot as his immune system will be suppresed with the meds ???
 
Hi netty Lou, we were advised to get Kian the flu jab as he on an immunosuppresant, he had it first time last year and was absolutely fine. he is on 6mp. x
 
Netty lou,

I am sorry your son suffered and was misdiagnosed for so long. The good news is now you know what is going on and there are medications that can help him. The Prednisone has its difficulties but it is great for putting on weight! My son went from 89lbs to 122lbs in the 3 months he was on it. He literally had to learn to eat again because his illness caused him to starve himself. I was so grateful he was finally hungry and eating well. Not that there aren't bumps in the road with prednisone but it was truly a miracle drug for us.

I know it is hard not to worry about all the "what ifs" with this disease and treatment. But I have learned to take it one day at a time. The worst should be behind you, him being untreated and so sick for so long. There are maintenance meds that will help with the transition off of Prednisone and they can very slowly taper him off if that is what his body needs. Did his Dr. talk to you about a maintenance med? My son started his at the same time he started the Pred because they usually take several months to build up in the blood stream and work.
I would do the flu shot, just don't get the flu mist. It has the live virus and shouldn't be used when the immune system is suppressed.

Welcome to the forum and please let us know how your son is getting along.

(((((hugs))))))))
 
Thank you for your kind words , my son is a different boy in the past ten days than he has been in the last year , he is enjoying his food so much with the prednisilone and seems much happier with life , he got his bloods done yesterday and wanted to go in himself , he has never done that , im hoping it continues to go good for him as he has had to miss the most important year of school because of his ilness , its been a very hard year but i feel so happy to see him eat and feel hungry again :)
 
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