15 year old

Well, he should be taking some meds already instead of just waiting for the remi. Most people start with oral steroids to get their acute disease under

control.

And I assume you have stripped every molecule of gluten from his diet.

Welcome to the forum!

Welcome! sorry to see you!

but yeah kaz is absolutely right; there are other meds he could be taking to get the symptoms under control while waiting for remicade. anti-diarrheals, for one. loperamide, immodium, etc. i dont know why it took my doctors years to think of them (one of the few gripes i have with them!), but they helped my quality of life immediately, and slowed down my guts enough that i was finally able to start absorbing nutrients. Ask your boy's doctors what they can do now.

I agree with everyone else. He needs to be on something and prednisone is a good "quick fix" option to try to get things calmed down. This could really help him while he waits for the remicade. A less commonly used drug is cyclosporine, but the doc could also use that while you wait for remicade.

I'm so sorry for what he's going through. I was dx'd at 16 and it was tough. It's hard on you as his mom too. What vax did he get? Was it live? If not, you might be able to push for faster remicade. If it was live you might be out of luck, but remember.... The squeaky wheel gets the oil. Do not be afraid to push and ask questions. The worst they can do is tell you no. Make them explain everything. Sometimes they just follow protocol. Other times there are valid reasons for waiting. I will pray for your son that he gets help fast. Call today about prednisone or immediate treatment! Hang in there, mom!

Stef

oh, yes, seconding the "ask questions" part. If you've got a good doctor they'll be perfectly happy to explain all the nitty gritty technical stuff, even if you don't understand half of it. Which is fine; you should be able to understand the important parts, especially if you ask the right questions ("How will that impact his health?" etc). In fact, sometimes this can draw less personable doctors out, and get them to engage more fully. My old doctor at Mayo was a research nerd; he was good enough with patients but he REALLY lit up when you got him talking about how the drugs worked and all those details. I really hope they appreciate him at his new hospital!

Also, I want to add: you should keep your son engaged in the whole process, too. He's going to have to take care of this himself in not too many years, so while right now you have control, you should involve him in the process. Let him ask any questions he thinks of, and let the doctor answer. Even (perhaps especially) if they're embarrassing. You may want to leave the room for a while, too. I'm pretty close with my parents but when I was a teenager there were some things I would not have discussed in their presence. Unless asked specifically, and then I'd've only answered with one word at a time. "Yes." "No." "Kinda." etc. You know how THAT goes, I'm sure.

Getting me involved in my treatment is one of the most important things my parents did for me. I was still a snotty teenager, but at least I knew what the hell was going on with my treatment, and why it would have been an especially bad idea to drink alcohol at the time (excessive bleeding). I wasn't particularly interested in it anyway, but my peers were. My buddies knew my preference/situation so didn't bug me about it, but Crohn's actually made a pretty handy excuse on the rare occasions I did encounter some pressure. "I'd die from the drug reactions." is a pretty effective way to get people to lay off! You might suggest that excuse to your son. His peers won't know any better.

Hi,  I was 15 years old when I was first diagnosed. So, I can relate to what you and your son are going through. I would phone your doctor back up and tell him he losing weight and cant keep anything down.  Make sure he is taking lots of liquids and try soft things like apple sauce, jello, it might help.  He will be fine.  I know what my parents went through but I am over 50 now and doing good.  Tell him he will get better and back to his old self.  It just takes some time.  The drink ensure will help give him lots of  nutrients.  Try that.  But do give your doctor another call.  Take care and keep your chin up.  Things will get better.  God Bless.  

Hello!
Was just diagnosed last year when I was 16 so I know what he must be going through.. Especially at this age it is a physical setback more.. I struggle many a times cuz after 'too much' exertion, from my point of view, I start getting fainting fits.. I've never been able to get through a whole 3 hour physics lab feeling energetic.. Actually it was anaemia and decreasing grades which led to my Crohn's diagnosis...

Anyway, luckily I've got a wonderful GI who makes things sound fine.. And cuz I'm interested and want to pursue the medical field, every trip to the doc is exciting... So try that you get a doc who your son (JW right?) feels comfy with, it makes things a lot easier..

Then about the weakness, I've a pretty big appetite now :-P cuz I realize that all that I'm eating is not reaching me... So i guess i eat 4-5 times properly a day.. So now I'm 50kgs at 5'4 , even though I've lost 3 kgs again in the past 3 months..
No need to mention that a very healthy diet is required.. I drink a LOT of natural juice, and by natural i mean the juice mde of orange/pomegranate etc right in front of me..

My joints have troubled me a lot lot, esp in the neck region, cuz that meant I basically couldn't study... But thank God I've found a solution to this.. You must've heard of the hot water bottles for massaging.. I'm not talking about the heating pads, infact they didn't help much.. I massage a lot of times in one day not only for the neck, but even my lower leg, twice or thrice... It works wonders,Alhamdulillah

And thirdly, as Bane mentioned, get him involved.. Infact make him join the site and pose questions, even if trivial, and read stuff relatable and informative... This will not only bring up his interest but also open his mind.. I'm definitely very glad and thankful I joined it at the right time..

Lastly and most importantly, It's necessary for JW to not feel depressed or down.. Scifi2k explained in a recent post very beautifully, that I believe in myself, which JW should read
www.healingwell.com/community/default.aspx?f=17&m=3040352
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So I hope this awfully long post mine does JW some good
Best wishes
Bullz