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Hi. You can vent here as much as you want! I am thinking of you and your son. I am so sorry and honesty that is a lot you are carrying. I don't blame you one bit for needing to vent. Tell me a bit more about his therapist. What is he or she reporting? Do they have a recommendation for how...

Hi Richard. Do make a good post because you will get lots of insight from more recent posters. My son got into remission with steroids and EEN. He then moved skowly from about 80\20 EN and scd 20/80ish EB AND SCD. It is a delicate house of cards but still to be working. Another MRE soon to be sure.

My son started scd when he was moving from full formula to 80/20 and I decided it would not hurt if we put some thought into the limited food he had. It really was a whim back in the early days of diagnosis and panic. The problem is that no formula qualifies for any of the diets! Basically...

Hi there. Sorry, my notification settings are wonky! My son has had success using a combinations of treatments. First many months of steroids, then EEN, followed by combo of SCD and EN. I won't bore you with the full saga. It is a big commitment to keep the diet, use the formula, and getting...

Yes. First scope was at first flare/diagnosis and pretty much a nightmare of ulcers and inflammation throughout tract. Next one was clean to eye but showed microscopic inflammation at duodenum and ti, and then finally a scope with clear biopsies. Has she had MREs?

We are having big debate here about use of Advil. I'm now curious. Can anyone give me a primer before I call GI? I know that NSAID can cause some harm that mimics Crohn's. Are there certain parts of the tract more likely to be impacted? Does damage show up on scope or biopsy or both? How does...

I'm following this with interest as I'm learning about EDS. Hope Grace makes some progress.

http://www.pedsibd.org/parents/livingSchool.html sample IBD one on link on side

My son has this test every few months. We have always been told that levels are either normal or not and as long as they are normal not to worry. We've also been told that a non IBD person could take this test at different times and their levels would vary also within normal range. In the US...

What results are these? FCP?

Does it seem to correlate with other events? My son is in remission but has frequent labs, tests and scopes because of his treatment plan. I think he pretty much forgets about disease until there is some reminder and then it comes out. It is almost like it is really not "present" and then he has...

Depending on the system he makes very little or more likely nothing when you do infusions at hospital. He is probably a part owner of the on-site clinic and makes a nice chunk. I'm sorry but your time with him is over. You don't want to force his hand because you probably would question the care...

This is raising a red flag for me. What is reason he wants her to change? Is there a problem with insurance at hospital? Is there a medical reason to change to his center?

Psychologist with experience in this area has been life saver. At this age they don't want to go but I think are surprised at how much it helps.

They may order a different blood test, the t-spot. It is more expensive and laborious for lab than quantiferon, but it may be best option for patients who may have compromised immune systems. Some hospitals now use t-spot for enployees. My ds had false positives with skin tests.

Levine and team are very excited about this. We've seen him. :).

Sure. Hope you enjoy an uneventful vacation.

Chocolate Peptamen Jr seemed to be the "least offensive" after he tried maybe 20 different types and flavors. Straw, cup you can't see into, and so cold it is almost frozen. This was not a fun time in our house. I think he realized it would never taste good and finally accepted this was his...

On your question about siblings - There are several published numbers about the likelihood for relatives. I've been told that some researchers and drs believe current day numbers might be higher. One of the ped IBD gurus mentioned occasionally on this site would be delighted to test all my...

How is she?