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Help! Child in pain.


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I'm a parent with a nine year old who has been dealing with IBS type symptoms for about 2 years now (diagnosed as IBS).  The flare ups were horrible at first, and then doing FODMAP, we seemed to get a bit of a handle on it (we keep a detailed food journal) for almost a year, until recently.  He's lactose intolerant, and seems to have issues with fructans.  He also will have a flare up if he eats something that is particularly greasy (we avoid that), has heavy meals (we monitor that closely as well), or eats too late in the evening.  However, lately, it seems like a strong psychological component is cropping up.  He noticed some chicken we baked looked a bit greasy, and he tried just a bite, and had a flare up that ended up in the ER.  At this point, if he's even the slightest bit averse to eating something, we just don't give it to him out of fear of a flare up, even if it isn't a typical trigger.  Keep in mind the chicken was baked, no oil was used to prepare it.  Either way, at this point, if he even thinks it's a trigger, we don't give it to him.  Our food options are becoming very limited, and much of what we eat is something we prepare for him, as opposed to store bought / prepackaged items.  

About two months ago, the IBS symptoms came back with a vengeance.  We've had multiple ER visits, and overnight stays, typically brought on by the extreme pain he endures.  It doesn't happen with every flare up, because sometimes it is not so extreme that it requires an ER visit (will still typically miss 2 to 5 days of school), but it's still quite painful for him.  We've been to the ER twice in the last two month.  At first, we were given various things to try to deal with with pain (peppermint / hyoscyamine), and we recently tried bentyl (dicyclomine).  None of these have been effective in dealing with his pain.  Our doctors always suggest an NSAID (tylenol (and others) / not effective), and we recently tried toradol, but still no pain relief.  He has mixed symptoms, sometimes diarrhea, sometimes constipation.  However, they are bearable.  It's the pain that is unbearable.  When he has a flare up, and he is nauseous, we give him zofran (just so he can keep food down), which is effective, but obviously does nothing for the pain.  Sometimes, especially with constipation, getting a bowl movement will relieve the pain, but lately he's had more diarrhea type symptoms, but is still regularly going to the bathroom.

Our biggest issue is seeing our little person go through so much pain, and even when we go to the ER, they are unable to help with the pain.  It's very difficult to watch your child crying, and yelling, in extreme pain, and no one seems to be able to help, even our doctors.  We've met with several pediatric GI specialists, and none have had an answer for the pain.  Each time we go to the ER, they do x-rays, CT scans, fecal tests, blood tests, urine tests, and nothing suggests any other serious issues, aside from a diagnosis of IBS.  We recently tried cyproheptadine, which hasn't worked.  We're actually dealing with another flare up today.

He's missed almost 2 months of school this year, and my biggest fear is he will not have a normal life, as the pain is excruciating, and debilitating to the point he can't make it to school.  We are currently trying NERVA (a few weeks now), and setting him up with a psychologist to see if there is more that can be done.  We even met with a hypnotist who helped us with other issues in the past, with no luck.  We're at a loss, and I think the toughest part is watching him in such pain, and feeling helpless.  

Another potential diagnosis that was suggested was an abdominal migraine, which may be more accurate than IBS.  The pain is usually in the lower middle portion of his stomach.  Like I said previously, even with a very strict food journal, we still seem to encounter issues.  Either way, we just need to get him pain relief.  Lately it takes about 5 days for a flare up to subside, and his pain level is pretty high/debilitating throughout.

If anyone has any ideas that have worked for them to deal with the pain, please let me know.  I know there are tons of drugs out there, and at this point we would try anything, but I'm very skeptical, considering nothing has really worked thus far.  I'd go to the ends of the earth to help him, I just don't know how, and my son's doctors certainly don't.

Thank you for your time, and consideration.

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