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My teenage son just diagnosed this month with Crohn's

My 15 year old son Skyler was just diagnosed this month with Crohn's Disease. His birthday is on the first of next month. I feel so bad for him, what a terrible sweet 16 gift. He's going to be a Junior in High School this year and he was so excited. He also is really in to Taekwondo and was up for black belt promotion when he started feeling sick.
He's always been a pretty skinny guy but he started really shedding pounds and having tummy problems and then bloody stools. We went in to his PCP who did a couple blood tests and thankfully sent him off to a pediatric GI. On the very first visit to the GI Dr he told us he thought Skyler had Crohn's and scheduled a colonoscopy right away. The GI Dr ended up wanting to hospitalize him after the colonoscopy. Skyler who is 5'8" had dropped down to 98 pounds and was really dehydrated from the prep. The GI wanted to start him on Prednisone and give him a feeding tube. His GI was off for the next few days so his colleague from the same office was going to be caring for him while he was in the hospital. This colleague ended up not wanted to do the feeding tube and just had Skyler eat normally, on a normal hospital diet with no restrictions. My husband and I were so confused because this Dr told Skyler to bulk up on cheese burgers and milk shakes (which hurt his tummy). A few days later Skyler was discharged from the hospital only gaining a few pounds back from water weight. His normal GI doctor called us later and told us "Oh by the way I don't know if my colleague at the hospital told you but Skyler's biopsy also showed lactose intolerance." No wonder he was in such pain.
Too top everything off a scan showed Skyler has bad low bone density. The Dr said he can continue his non-contact Taekwondo but cannot break boards and breaking 4 boards (together) is a requirement for his black belt test. We've talked to his teacher who will talk to her master about what can be done. Poor Skyler is devastated. Right now he feels too sick to go to class at all. He is going to be slowing weaned off the Prednisone and I just gave him his first injection of Methotrexate on Tuesday. He's got a few bumpy red spots on his arm now that I think by be a side effect? He's also taking Zantac, Folic Acid, Calcium, Vitamin D, Iron, Zinc, kid's Centrum multivitamins and drinking 3 Ensure drinks daily.
This month has been so crazy and it's not over yet. I still have to meet with the nutritionist, take him to a ophthalmologist and meet with the school to get a 504 plan. I've been reading a lot of helpful things on this forum and decided it was time to jump in! Sorry for the long winded post! :ybatty:
 

DJW

Forum Monitor
Hi and welcome to the forum. Sorry your son is having a rough go of it. The early stages of crohns can be very difficult. A lot to take in. I'm glad he has a pediatric GI. There are a lot of great people on this site. Check out the section for parents of kids with crohns. Best wishes.
 
Welcome to the forum, I am so sorry to hear of all you and your family have been through. Diagnosis was a double edged sword for us. We were relieved to have an answer for all of my son's symptoms(even though like you our GI had said he thought my son had CD on our initial visit as well) but at the same time you are faced with so much info and the learning curve seems to be so steep.

My son was dx'ed at 15 and we went straight to Remicade as his inflammation was severe. C did have a short stent on Pred while waiting for transfer to a Ped GI and Remicade approval(a local adult GI dx'ed him and we have to travel to the Ped GI).

It took quite awhile for my son to get over the symptoms of fatigue that plagued him due to the iron deficiency anemia and also the CD. I would say in the last few months he has really coming around to his normal teenage activities. His appetite has finally also caught up to where it should be as well and that is making quite the difference in his weight and height.

I hope your son is able to find relief soon and his treatment whisks him straight away to remission!! Hugs and support your way!
 
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