It’s time I caught you up on all that’s happened with Silas (and I’ll warn you now that it’s a lot of information). From our week-long trip to see Dr. M in South Carolina, we found out that Silas has inflammation in his colon and small intestine consistent with Crohn’s disease, a disaccharidase deficiency, fructose malabsorption, bacterial overgrowth, and multiple food/environmental allergies.
The question I had from this point was – Which is primary?
Generally, you don’t have this many unrelated things going on. They are likely related somehow. It could be that Crohn’s is primary, and the inflammation in his intestines has caused all of these other things to go wrong. The problem is that Crohn’s disease in young kids is rare, and it would be extremely unusual to see Crohn’s in an infant – which is when all of his problems began. It could be that the disaccharidase deficiency is primary, and that his inability to digest sugars caused the inflammation, which caused all of the other problems. Or, there could still be a different problem (that we haven't found yet) causing everything. No one seems to know.
The problem is that unless we figure out what his primary problem is, we may not be able to treat it effectively. And nothing we’ve tried so far has made that much of a difference.
Here are some of the things we've tried these past few months…
· First, we had to eliminate the new food allergies they found. This is the one thing that’s actually been helpful. Eliminating foods is the one thing that always works. (That’s why we’re down to about 3 foods). Since we were already avoiding all forms of sugar, he was eating a lot of meat. After the allergy testing, we had to eliminate beef and pork. Beef was the one he was eating the most, we could see a definite difference when we removed it. The testing confirmed a suspicion I had that hamburger patties were bothering him. Any time he had one, it was nearly impossible to get him up and out the door for school the next morning.
· Second, they had us swap his anti-inflammatory from Balsalazide Disodium (Colazal) to Apriso, which is supposed to be more effective in the small intestine (where is inflammation is still active). We first tried it in the capsules (since he is good at swallowing things). He had problems with the capsules increasing symptoms, so we finally had to open the capsules and give him just the granules. He wasn’t any worse this way, but we didn’t see any improvements either.
· They then had us try Sucraid. If his primary problem is the disaccharidase deficiency, there is something called Congenital Sucrase-Isomaltase Deficiency (CSID). People with CSID take Sucraid with every meal to help them digest sucrose. He was screaming after taking it for just two days. We had to stop.
· Continuing with the CSID theory, we tried another digestive enzyme from Kirkman Labs. It increased his symptoms as well.
· During this time, I came across some very detailed information about the CSID diet and the foods that contain the smallest amounts of sucrose and starch (the primary problems in CSID). I fed him a couple foods from this diet. He threw up for NINE HOURS that night!
· I called the doctor in SC again. He said the one thing we hadn’t tried was an antibiotic to get rid of the bacterial overgrowth. Silas took it for a couple weeks. It might have helped slightly while he was on it, but it was nothing to write home about.
· Blessed Springtime! Silas always feels better in the spring and summer. It was a great relief when the warmer air began to move in, and he at least had some relief from the cold temperatures. Even his teacher commented on the difference in his behavior.
At this point, I wasn’t sure what to do next. Our GI doctor here in town (though super friendly) has been very slow to act and keeps saying that he still hopes Silas will outgrow this. Well, it’s been 6 ½ years already, and he keeps getting worse – not better. Sitting around and doing nothing just isn’t an option. We had gone to see the doctor in South Carolina because he sees a lot of patients with eosinophilic disorders – which is what we were looking into at the time. I’m not sure if continuing to drive to SC will be helpful.
In the middle of trying to decide what our next step should be, I decided to go ahead and visit our GI doctor here in town to see if all of these new findings would give him any new ideas – or at least inspire him to be more proactive. It was that visit that lead us to this…
And I haven’t even gotten to this yet…
Janel
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