Newbie

[Clash]

My 15 year old son was diagnosed with CD in March 2012. His problems began Aug. 2011. Trouble swallowing, night fevers, ulcers in mouth. The symptoms would crop up I would take him to GP and he would say virus and we'd come home. This happened three times before the abdominal pain set in. The GP called for barium x-ray results normal. By now Chase was experiencing severe fatigue, joint pain and abdominal cramping blood work came back normal but slightly anemic so GP sent us to GI in Jan 2012. GI did upper endoscopy(I had been treated for h. pylori two years ago) no h. pylori but severe gastritis so he put Chase on nexium and levsin. GI set us up for pill cam in March 2012 but Chase had a severe bout with pain in Feb and GI opted for CT scan.

Scan showed inflammation in 18cm of terminal ileum so GI cancelled pill cam(concerned it would get stuck and now needed tissue for biopsy) carried out colonoscopy and found severe inflammation in terminal ileum. Took biopsy and diagnosed Crohns. GI initially didn't want to start with steroids, wanted to go straight to Remicade but by this time Chase's pain was increasing and fatigue was keeping him in bed most of the time. Joint pain became so painful Chase would just ball up and rock. GI said joint pain isn't that bad with Crohn's and had GP run test for RA which came back negative. Chase has been on prednisone 40mg a day for five weeks. We switched to a Ped. GI went to first visit and he looked over records and wants to go straight to Remi so started the Ins cert process and took TB test. The following week we ended up at ER with sharp abdominal pain and vomiting they ran CT and bloodwork, flare up still active steroids not working bloodwork normal except low ferritin and raised WBC(IV Levaquin, fluids, IV pain meds then home) doctor hoping to have first remi scheduled for next week still waiting in ins. cert.:yrolleyes:

Sorry so long but now to questions. The first GI said his Crohns was severe and he wanted him on remicade. The ped GI said the same. Although Chase has constant cramping, the abdominal pain has only been Emer. Room severe twice, the joint pain and fatigue are more bothersome to him most of the time. So a week ago CT scan showed active flare but bloodwork at the same time was normal(barring increased WBC and still low ferritin) but no mention of increased SED rate or CRP. Is that normal? He has already had his TB came back neg. but can they start Remi if WBC is still raised? He should begin being weaned off steroids next week 40mg to 30mg what should I expect? There are probably more questions but I get overwhelmed by them all at times. Any advice would be appreciated.

 

[Angrybird]

Hello and welcome to the forum. Sorry to hear about the diagnosis and that your son is still not feeling well. The joint pain can be put down to the crohns still being active as a fair few of us get joint problems when on a flare. With regards to the ongoing pain it might be worth having a look at diet especially enteral nutrition, this has shown to have good results and may help with calming things down. Also ask you the doc about getting his vitamin levels checked such a B12 and D, it is common for people with crohns to be deficient in these and a symptom of low B12 is fatigue......finally do have a nosy around our parents forum as I think this would be a good place for you to have look at and meet others in the same position http://www.crohnsforum.com/forumdisplay.php?f=49.

I do hope things can improve for your son soon.

AB
xx

 

[Clash]

Thanks so much for the welcome! I believe the GI is going to do a bone age test(15yo 5'3" 100lbs so maybe affecting growth) and I am going to ask him about vitamin deficiency again then. At this time he prescribed Ferrex 150. I asked previously and he felt there were malabsorbtion issues with the ileum being the affected area but when I questioned him about diet and nutrition he didn't give a concise answer. It was such a whirwind and I had so many other questions I didn't think to press it.

I have researched EN and find it so odd that it is accepted practice abroad but not generally so in the US. I absolutely think there are benefits to it from what I have read. Not sure I could convince Chase of this, since he is the one that has to maintain the regimen and has seemed fairly put off by EN, I haven't brought it up to the doctor yet.

It seems I should have posted in the forum Parents of IBD but I am unsure how to move this thread over there or if I even have the accsess to do so. Also, although I've looked on the tour and FAQ on how to add a signature so I can list all his meds and so on I don't have the signature edit option only an avatar edit option. Can anyone instruct me on this?
Thanks again for your welcome, I have perused this site over the last several months and have been so thankful for the advice, vents and info I have read.

 

[Angrybird]

Hi, I am not sure about why you cannot sort out a signature as there should be a edit signatute option underneath the edit avatar. It is more than fine for your post to be here, this way people can come a day hi Perhaps copy this in to a new thread in the parents forum as well.

AB
xx

 

[David]

Greetings and welcome. I'm glad you found us and my heart goes out to you and your son. That must be so tough

I agree with AB above about getting the vitamin B12 and vitamin D tested. It's so important, especially with active disease in the terminal ileum. When you get those levels checked and the results come back, get the actual numbers. In fact, start getting ALL his data so you can keep track.

I also agree that EN would be a fantastic option for your son, especially since he has growth issues. Even just some of the meals would be better than nothing but the more, the merrier. Your son needs to understand that this is a very serious disease and proper care now can and will make a huge difference in the coming years. Yes, it's hard to be on EN but it's so important that his body is given the nutrients necessary not only to grow, but to function as optimally as possible so it can fight this disease.

As for the Remicade, your doctor will start it if he feels that the increased WBC isn't due to an infection that will be made worse by the Remicade.

We're here for you anytime

 

[Clash]

David, thanks for the info and the welcome! At his next visit, which is supposed to coincide with his first Remicade infusion, I'm going to ask to have his vitamin levels tested as well as scheduling the bone age scan. I am approaching Chase slowly with the idea of EN, you know to get past those typical 15 year old angst defense systems! I looked at the growth charts out of curiousity and he is at or below 5% in both weight and height. When I asked the doctor about diet and nutrition he implied that he couldn't worry about that side of CD until we get Chase out of the flare-up in the terminal ileum and off of any meds that may have an effect on growth. I'm going to approach him about it again at the next visit. You almost feel at a disadvantage, we chose this doctor and his group because of their CHOA affiliation and the time and experience they have with IBD but it also is slightly intimidating to deal with someone of that stature if they don't completely agree with what you have found may be helpful. Anyway, thanks again for the info and I am going to push for the vitamin testing you mentioned! This is a great forum, it is comforting to know there are people out there that can lend an experienced ear to those who yet have the rundown of it all!!