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I know - it is hard. We tried but my son wouldn't open up to a psychologist. For us, it is a constant adjustment - one day my son is open to talking, one day not so much - especially about school and/or CD. We are trying to respect that as much as we can. When he is open we try to make...

Hi hope all goes well today. My son is also on Remicade and doing quite well with it. While his symptoms improved immediately, he did not feel well until after he finished the loading doses. Sometimes the dosing and frequency may need a little tweaking until its just right. We also had a...

Hi Jland, My son also has alot of saliva, especially in the morning. Around the time of diagnosis, he also had trouble swallowing although he had numerous ulcers in his mouth and esophagus. He has been on Prevacid since, which seems to control it somewhat. Acid reflux can cause excess...

Yes - although it is the digital age we are not picky on how the work comes home. He has 2 classes where there are web sites - one better than others. One class where there is a website but you can't follow it. And one class where the work is emailed or I pick it up in an envelope. I told...

Hope - thanks! The school says they are looking at ways to help him now - I hope so. Kev thanks - Glad to hear you can eat all the good stuff! That is living!! My son loves that the same things. I'm not sure anyone knows without a shadow of doubt why his stomach has been so problematic...

Thanks Happy - you are right. I think a "non-traditional" IEP throws the educators for a loop - but its not the first one they've seen - and certainly don't think it will be the last. You could approach it as an opportunity to make things simpler for dealing with kids with chronic illness in...

Haha Twiggy - I love report card time with the absence comments - I usually open a bottle of wine before I open the report card. My son won't even look at it any more. Its good to know about Khan Academy. Fortunately we have a resident Math whiz on call who can help out where needed. The...

Thanks Wallace, I am very sorry you too are in this boat and hope you are recovering well from your surgery and that it brings you some relief. I am glad to hear of other schools that are supportive of kids who are absent due to no fault of their own. Thanks for your advice - I am...

Thanks SM, Sorry your daughter is having a tough time with her symptoms and attendance - I feel for you - so much. It is tough to watch especially when you know they just want to be a normal kid and go to school. You are smart to get the IEP in place and meet with the High School. We did...

Thanks Tess, I agree with you and have been playing climb the bureaucratic ladder albeit faster than they would like - this is so sad. Its a tough balance. I don't want to make my son's experience at school difficult for the next few years, but I need to hold them accountable.

Thanks for your support. The medical team agree with me, and have said as much - documented - not worried there. I know they can't force home schooling but he will fail if he does not have accommodations made for his illness. That is the issue. The have done nothing and it feels as if they...

Thanks Hope, I'm sorry to hear your daughter is in a similar boat. It is heartbreaking to see our children isolated from the other kids, when hanging out with each other it is such a big part of their lives at this age. Our school board does not offer online classes until 11th grade...

Thanks MLP. Yes we've done all that even contacted the CCFC. The IEP coordinator is actually the principal - which is part of the problem. I could write a whole new thread on how badly they botched the IEP but I will not bore you. Kev, thanks for reaching out - your support means alot. I...

Hi. Its been a while since I posted. My son was diagnosed with severe Crohn’s in 2011 at 12 yrs old. It took almost a year to get it under control and he is now on Remicade - which for the most part is working. Remicade allowed him to get back to normal weight and height. He is a big...

Hi Devynsmom, My son had an MRE (he was 12) while he was admitted to Sick Kids. If you ask they will let you go in the room and sit in a chair beside the machine (its very cold bring a sweater). Even though he couldn't see me, my son felt better having me there. Once in, they do a good job...

All great suggestions. I've found the creams and sprays aren't offered by medical staff unless I ask. We've used Emla, Maxilene and the spray (forget name). All have the same effect, but the spray is the quickest to numb and I always carry a tube of Emla in my purse just in case. I've...

Tess, I feel for you...I've not had the best experience where referrals to other clinics are concerned but I did find it helped to stay on top of the referring nurse, do bring it up with his GI at the next appointment and maybe even go so far as to get your GP involved to expedite and ensure...

Tesscorm thanks for sharing your experience on transitioning to adult care - while the transition is a few years away for us, I appreciate learning from your experience and am likely to be dealing with the same hospitals. To add to your interesting side discussion on the victory lap, if I...

Hi bor, My 13 yr old son was also hospitalized for over a week prior to diagnosis. He has not had imuran but was on Humira (now on Remicade/Methotrexate). Humira also typically takes 2-3 months to start to work. As a result, he had a very rough time tapering off prednisone (4 attempts) -...

Welcome Maddie's parents, Sorry you are going through such a tough time - with both your kids but I am glad your older daughter is doing well after her treatment. I have no experience with Crohn's in such young children but have recently joined the Remicade fan club. My son is much older but...