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It's hard to tell my son has been asymptomatic for some time yet his inflammation remains. He probably hasn't been on stelara long enough yet since I think he started only a few months ago. So his loading doses and 3 shots so far, I believe.

My son started the CD dosage for Stelara bit before FDA approval for CD. So his loading doses were 3 90mg shots on day 0 then another 90 mg shot on day 30 then 1 90mg shot every 8 weeks. He has had a stuffy nose during stelara dosage time but this was after loading doses and with injection. I...

You could look into inappropriate sinus tachycardia or maybe postural orthostatic tachycardia syndrome. The former is where your resting heart rate averages high at resting consistently the later is where you have a 30+ bpm increase when standing or over 120. You can good both to get an idea of...

I'm not sure what the recommendation for adults are or even the official recommendation for peds patients. My son's GI opted for yearly for my son in the beginning. But since we've not been able to reach remission and he is asymptomatic with severe disease he's had scopes aboit ever 6-9 months...

There's actually different types of remission. Clinical remission (normalization of lab work lack of symptoms) There can still be active disease present it just isn't showing in blood work and symptoms have backed off. This used to be the standard to which GIs treated. This left simmering...

Gastroduodendal CD isn't the only location of CD where patients don't experience diarrhea. My son's disease at dx was located at the ileocecal valve and up a bit into the terminal ileum. He didn't experience diarrhea. He did have some trouble with constipation though. After surgery his disease...

My son had an ileocecectomy a few years back. I think he was 16 or had just turned 17. His was due to his Crohn's, none of the meds had worked to fully quell the chronic inflammation and surgery was needed. So they removed part of his terminal ileum, his ileocecal valve then of course the cecum...

Remicade has done better than lower tier drugs when dealing with fistulizing crohns disease. Fistulizing disease is considered severe. Since kids tend to have more aggressive forms of CD and are in their growth period it is important to get the disease under control quickly so normal growth can...

The MRE or pill cam would show the small bowel. But if the colonoscopy was able to reach through the IC valve into the terminal ileum and see inflammation the first time then a colonoscopy should be able to do so again plus you would get the benefit of biopsies. My son has a colonoscopy...

With colonoscopy and endoscopy there is a large portion of the small bowel that cannot be visualized. An MRE or pill cam can be used to visualize that area. Of course, neither of those tests offer the benefit of biopsies in the small bowel but they can show thickening(mre) or...

My son started with pain, night fevers, and severe fatigue before dx. There wasn't blood seen in his stool nor did he have D. In fact, his bms were once a day or every other day. The pain and fatigue kept him in bed and not able to function. After dx he was started on remicade. Within the day...

Hope the changes help and he can get you in with the pain Center. Hope an opening comes up soon with the other doc. Hugs!

Yes agree with my little penguin for most it takes months not weeks so 6 weeks is probably not long enough to determine if it's working well yet.

It sounds like the inflammation was found at the most common place for CD, being ileocecal. I'm assuming when you say that biopsies didn't say CD you mean they didn't find granulomas. Although, those are a clear indicator they're not found in over 50-60% of cases maybe more depending on the...

I think I read somewhere that only 10-13% of private hospitals in Australia have ERs. They operate more like same day surgery or overnight surgery places. So I think she's saying the private hospitals who dont have ERs served ER needs due to the size of the health event.

After seeing your post I searched and read article about this type of event! Crazy! What a freak occurrence. Awful that there were deaths related to this.

I would ask for an MRE (magnetic resonance enterography) or possibly a pill cam. Either of these can give the GI a view of the majority of the small bowel that cannot be seen with either scope. If the GI you are seeing isn't willing to do these rets I would look to a second opinion.

C hasn't had to deal with kidney stones but I'd wager he'd choose surgery as well. His pain tolerance is high too but if there was a chance he'd had to have the surgery anyway and over his holiday break he'd opt for now. He's already grumbling that his wisdom teeth are being removed over his...

My son is in Stelara. The patient assistance program, care path, is very similar to REMISTART and Humira Complete. It is not financially based and it picks up the majority of the out of pocket cost. My son started stelara before the FDA approval. Care path (stelara assistance program) charged...

My son started stelara right before the approval with the IV induction protocol came out. He instead had Day 0: 3 90mg self injection and then Day 30: 1 90mg self injection. He then moved into the maintenance phase so 1 90 mg shot every 8 weeks. He's not had any side effects so far and is...