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I'm sorry. How frustrating. No other symptoms?

My son had colonic and EEN then supplemental EN worked wonders. Ped GI was 100% into EEN. We had a big hiccup when I took him to an adult GI (I know, he was only 14 but he was over 6 feet and I wanted to hear it was anything other than Crohn's). We told DR he was doing EEN and he rolled his...

Good morning Sascot. I am so sorry you are dealing with way too much now! Im sure watching Amy hurt so much is tearing you apart. Let's hope the gyn has some great wisdom and answers, and if not, can point her in another direction for help. So sorry about your friend and that her cancer is...

This made my day! She is a very impressive young lady. I know you are proud. Oh how I want her to get beyond all this pain!

Packing some formula for the trip is a great idea, regardless of how dr wants him to reintroduce foods. My son is probably at about 30% of calories from formula now. I can always tell when he isn't feeling well because he increases the amount of formula on his own. Having extra around could be...

Actually the holiday at the end might give him a great emotional boost. He too is dealing with the diagnosis and trying to sort out what it means. He can see on the internet the worst parts of Crohn's and has probably been involved in some medical conversations he really didn't want to hear. I...

She (and you) needs to catch a break! I'm glad to hear she was running about today. Maybe that is movement in the right direction. You are just caught in the perfect storm of waiting to see specialists and insurance and a weekend. Ugh. I hope Monday brings some a "Yes" from the insurance...

Sorry, I think I had turned off notifications. Tess, I am sorry that S is having a shoulder problem. Is it better? Teen boys and their injuries... PDX and Maya, surgery recovery went very well. He did have oxy for a few days and then actual took some advil for a week which made me panic. He...

Sorry, didn't get a notification that someone had posted! He has Crohn's. Originally the drs were in the general IBD camp, not sure which one, but they fell into Crohn's camp as more time passed and there were two more scopes and biopsies. There is still one pathologist who wants to call it...

I hope time passes quickly for you until you hear back on Tuesday. There are still many options to try, new, different, more, etc and you will find some thing that works. Wishing the drs wisdom on next steps.

Ron, I'm sorry to hear about your dad. I'll pray for him and for you as you process this. My bet is your brain fog is from worrying about your health and what is happening with your dad at same time. That is A LOT to deal with and takes up your most of your mindspace.

Of course you talk to dr. Fascinating how different approaches are used. Once they uttered the words Crohn's at Boston children's they handed us a kit that included all types of elemental and semi, even some that were concentrated in tiny packs, like an applesauce package. We never tried that...

Amazon uk sells Ensure and Boost. Bought it for my son last summer while traveling so we didn't have to pack it. Maybe they don't anymore?

Hi there. I'm sorry to hear about the diagnosis. It really is a shock, isn't it? My son was 14 when he did EEN. He had a hard time coming off steroids so this was recommended. I'll be honest the first few days were our own personal hell. We finally changed how we talked about it. Gone was any...

Wonderful!! She has worked very hard to get there. So glad. I'll celebrate with her by having something calorie rich!! 😀

I also know a girl who went into remission once she went to a higher dosage of remicade. Let's hope he has same success.

Malorymug, I'm starting to catch up on threads and hate to read this one! I am so sorry. My son did steroids and when he couldn't wean without symptoms coming back, he did EEN. he still is about 30ish percent formula a year later. I totally get his reluctance to EEN. I'm tempted to put him in...

Malorymug, I'm starting to catch up on threads and hate to read this one! I am so sorry. DUPLICATE

I've heard people with medical conditions say they keep info on a disk or drive, but a hospital won't insert an unknown device into their systems. You need it accessible another way - paper, jewelry, and that phone idea is interesting.

He has not had a bone scan. I'll ask about that. There is so much focus at his visits on hey he is still doing great, we didn't expect that, and how unusual he is that I think some things get missed. I'm learning that you need to be a part-time researcher and full-time advocate with this...