Getting Closer

Last  Friday, I spent a good amount of time on the phone with the nurse from Cincinnati Children's Hospital. We were basically able to do sort of a "phone consult" to update on where Kara is at now, since they had already reviewed her records. She was already aware that Kara was on a Neocate only diet for a few weeks and had made the doctor aware of this as well.

Through our conversation, we developed a plan that has given me a huge sigh of relief. Basically, since Kara has been on what's called an elemental diet for over four weeks now, scoping her is not going to be of any benefit to them to diagnose or rule out additional disorders. We are in the perfect place, being on this elemental diet because this has taught us a number of things, despite how difficult its been. We have learned that Kara's GI trouble is, in fact, caused by an allergy to foods and not due to something else. We have also, very importantly, learned that Kara's eczema and asthma is NOT food driven since she's had such bad breakouts even though she's been on the elemental diet. This is huge, as I have always associated these eczema flares as being from an offending food.

They (Cinci) tweaked our plan that we had with the U just a little bit after reviewing the records. We decided on the full two week trials, beginning with corn, and then either banana or potato for another two weeks. The first four foods we will do will be those three and then apples. I confidently told the nurse that the first three foods SHOULD be just fine, Kara should have no issues with them but after that, we are back to everything being a shot in the dark. Doing the 14 day trials, beginning with a tablespoon a day and working our way up will give us the full, big picture on how she can tolerate each one.

Because of where Kara is at right now on Neocate, we discussed whether or not we need to come right now and it was decided not to, since we have been able to do so much over the phone. We were told we could come for the consult now but we'd just have to come back again when we ran into food trouble, so as long as it isn't necessary on there end at the moment, we opted out. Once Kara starts having GI trouble again from food, which she will as we trial (unfortunately, the game is trial and error. The only way to know if she's going to react is to try...), we will let the nurse coordinator know and she will get us set up, hopefully right away, to get out there for her appointments.

It was explained that the week we go, Monday would be the GI consult date, Tuesday would be the scope, Wednesday is the appointments with the other specialists, Thursday is back with GI and the team to discuss biopsy findings and Friday is left open for anything left. I asked about the other specialists on the team. Their Allergists are Immunologists as well (the same as Kara's new GI) and other specialists are available as the team sees needed.

This plan has left me feeling very hopeful and we have a lot of very busy weeks to come with the beginning of food trials. It's been almost five weeks since Kara has had a bite of real food and about seven weeks since she's been on her old diet. We've come a long way but yet this is only the beginning.