\n<\/em>We most likely won’t ever know.\u00a0 Adela has several genetic issues that are associated with higher incidences of severe colitis.\u00a0 People with duplication of a certain region of the ninth chromosome, defects in certain regions of the X chromosome, or some mitochondrial DNA defects all have a higher chance of suffering from intestinal issues like Crohn’s (or other Crohn’s-like conditions).\u00a0 Adela is two for three on those…and the third test is still pending.\u00a0 There’s the chance that this is actually Crones and we just happened to catch the initial flare, but there’s no way to tell at this point.<\/p>\n
Will the inflammation recur?<\/em> Are there any outstanding tests that would answer the two questions above? \u00a0If so, when will the results be back.<\/em> Are there any remaining tests to be done before discharge?\u00a0 (eg – another metabolic cart test, other genetic tests, etc)<\/em> What’s the timeline for the reduction\/discontinuation of TPN, the corresponding increase of Elecare, and the reduction of steroids?<\/em> Was there any proof this was food-related?<\/em> When can we reintroduce other foods? \u00a0How?<\/em> What supplements\/vitamins does she need taking into account her food allergies (that there are some nutrients she won’t get, eg – selenium)?<\/em> How long will she be on steroids?<\/em> How long will she keep the broviac?<\/em> Will she need another flexible sigmoidoscopy? \u00a0If not, what specific tests will be used in follow-up appointments to verify that her intestines are healthy and not getting inflamed again?<\/em> Did Adela’s karyotype results come back? \u00a0Did they match her results from Duke?<\/em> And of course, with Adela, she always likes to throw a curve ball just to keep things interesting.\u00a0 Enter her pancreas.\u00a0 So, several weeks ago, soon after the inflammation was discovered, she was having terrible tenesmus (pain and straining when on the potty).\u00a0 Her GI doctor ordered several pancreas-related tests just to rule out pancreatitis.\u00a0 The results did rule that out, however a fecal elastase test that can measure how well the pancreas is functioning came back with an abnormal value.\u00a0 The curve ball part of this is that pancreatic function has nothing to do with her inflamed intestines.\u00a0 It may be that we just happened to stumble upon another of Adela’s medical mysteries.\u00a0 So, here’s the plan — we will redo that test to see what the level is.\u00a0 It takes about two weeks for the results to come back, so they should be back about the time we’re coming in for her scope procedure.\u00a0 If the levels are back to where they should be, we’ll just keep redoing the test every so often to monitor it to make sure that we’re not in some kind of cycle of normal then reduced pancreatic function.\u00a0 However, if the levels come back low again, they’ll need to take a look at the pancreas in more detail.\u00a0 They can do an echo, however it’s usually not very reliable on the pancreas.\u00a0 Most likely, they’ll need to do an MRI of the pancreas, which means Adela will need to be still for about forty minutes.\u00a0 Since the chances of Adela remaining still for that long are, let’s face it, nonexistent, we’ll schedule the scope and MRI to be done one after the other so she only has to be sedated once.\u00a0 Granted, this is all a few weeks out and any of it may change, but that’s the plan as of right now.<\/p>\n Now on to some more good news, Adela has been getting off her pumps for a few hours a day and today was in the lobby play area for the floor walking around all on her own and just as happy as could be.\u00a0 If you looked at her, you wouldn’t have even known she was sick.\u00a0 She’s really hit it off with the daytime nurse she’s had for the past three days and is having fun with both the preschool teacher that comes each day and her visits up to the playroom with the recreational therapist.<\/p>\n
\nSince we don’t know what caused the initial flare, we don’t know if it will recur.\u00a0 The plan is to have another scope procedure done in two to four weeks to look at the state of her colon.\u00a0 The thought is that if it looks like it’s recovered, we can possibly treat this as either a one-time issue or a flare of an colitis.\u00a0 Either way, we could come off the steroids, have some follow up appointments, and if all’s well move on.\u00a0 If there are signs of continued inflammation or damage, we’ll treat this as a chronic condition and we’ll switch from steroids to an immunosuppressant for long-term management.<\/p>\n
\nNo.\u00a0 The only outstanding tests are a redo of her karyotype and a mitochondrial DNA test.\u00a0 While either may shed some light on that she’s more prone to colitis, neither can answer definitively what caused the initial flare or if it will recur.<\/p>\n
\nYes.\u00a0 We’ll be redoing the metabolic cart test soon.\u00a0 The thoughts are that, when the initial test was done, Adela was suffering from the inflammation which caused her body to need more calories.\u00a0 Now that the inflammation is under control and she’s healthier, her caloric needs may have changed.\u00a0 Since they’re in the process of tweaking her TPN\/Elecare ratio, having a better understanding of exactly how many calories Adela’s body needs will be very useful data.\u00a0 Other than that, just routine labs to ensure that the reduction of the TPN isn’t causing any nutritional problems that may arise if Adela’s intestines aren’t able to absorb the nutrients from the Elecare.<\/p>\n
\nTPN will be reduced over the next week and discontinued near the end of next week.\u00a0 Elecare will be increased to compensate for the TPN reduction.\u00a0 The dose of steroids will be reduced to a maintenance level over the next week and will remain at that level while we’re at home before returning for the second scope procedure.<\/p>\n
\nNo.<\/p>\n
\nIn four to six weeks we can start reintroducing other foods.\u00a0 Even though there’s no proof that it was food-related, there’s the consensus that we shouldn’t add any more variables into the equation while she’s recovering.\u00a0 We’ll see how she recovers at home off the TPN with just Elecare.\u00a0 After we have proof from the labs that she’s doing well, we’ll start to reintroduce regular foods.\u00a0 We have a plan of which foods to introduce in which order and we’ll be following up with labs to ensure that none of them are causing the problem either.<\/p>\n
\nShe’ll go back on her NanoVM vitamin that is a comprehensive vitamin supplement.\u00a0 Anything she doesn’t get through Elecare will come from that.<\/p>\n
\nFor about two to four more weeks.\u00a0 They’ll be reduced over the next week then she’ll be on a low dose until we come back from the scope.
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\nWhat follow-up appointments will we have and with whom?<\/em>
\nWe don’t have a schedule yet, but we’ll be following up with GI, Immunology, Metabolics\/Genetics, and the general team.\u00a0 The plan is to try to get scheduled for all those on the same day so we’re not making a ridiculous number of trips over here.<\/p>\n
\nWe’re definitely going home with it.\u00a0 How much longer past then we keep it depends on several things.\u00a0 If everything looks good after the scope in two to four weeks, it may come out then.\u00a0 If there are concerns, we’ll keep it longer.<\/p>\n
\nYes, we’ll be back in two to four weeks for the flexible sigmoidoscopy.\u00a0 They can also look at her sed rate (ESR) to determine if there’s inflammation.<\/p>\n
\nThey’re not back yet.<\/p>\n
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