Silas saw Dr. M in South Carolina on Wednesday. We drove there on Tuesday, saw Dr. M on Wednesday, and drove back that same day. Thankfully, they were able to get us into the Ronald McDonald House, which saved on hotel expenses.
At this point, it’s difficult to say whether or not Dr. M will be able to help us. He is a GI doctor who specializes on Eosinophilic Disorders (EGIDs). What I did like is that he seems to be more proactive than our current GI doctor. There was not enough information for him to determine whether or not it is an EGID. If it is, it would likely be EGE (eosinophilic gastroenteritis). EGE involves too many eosinophils in the stomach and small intestine. Dr. M said that those with EGE often have elevated eos in the blood along with asthma or eczema. Silas does not currently have problems with any of those things.
Part of the problem is that while they have developed criteria to diagnose EE (eosinophilic esophagitis), they have not yet developed criteria for diagnosing the other EGIDs. Since Silas’ eos numbers were elevated but not extremely high (in his previous scopes), it’s difficult to say if that is the real problem without set numbers for diagnosis.
Before we left, they did some labs. One thing they were going to check for is porphyria. The main result of the visit is that Dr. M wants us to return for a longer visit. First, he wants to do another endoscopy and colonscopy. Silas’ last scopes were three years ago, and they were all done while he was on formula (which would have reduced the number of eos). Dr. M also wants to redo the hydrogen breath test for fructose malabsorption. His office has a test that is more thorough than the one done previously. Finally, he wants us to see the allergist that he works with who does patch testing. (Silas no longer shows allergies through blood tests or skin prick tests.)
We will have to be there at least four days in order to have all of this done, but we won’t be doing it any time soon. Because Silas is more reactive in the winter, Dr. M wants us to wait to run all of the tests. He wants us to return when we will be most likely to see the problem. He doesn’t want to force sickness but instead catch Silas when he is naturally having more problems. So, that will most likely be November or December. And again, we wait…
He wasn’t overly concerned about Silas’ nutritional intake, but he did give us some Neocate Splash to try. It’s basically flavored elemental formula – still supposed to be pretty nasty, but for someone who can’t have sugars, Silas was thrilled to have something new (and sweet) to drink. It will be very interesting to see if he’s able to tolerate it. Although it’s elemental and hypoallergenic, it still has 10 grams of sugar per box. He’s been doing so well that it will probably take a little while to know for sure. (Not all of his reactions are immediate – especially with something new.) He drank the first box yesterday and a second today. His eyes were very puffy when he woke up today, but I don’t know if it was the new drink or something else. Only time will tell. Of course, the doctor only gave me three, so I will have to buy more (at $115 a case) to continue the trial.
Until next time…
Janel
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