Wednesday, July 25, 2012

Aerynn's first RCH visit

Ever feel you're setting yourself up for a fall?  I think I did that with this trip to Melbourne.  I went with such high expectations of coming away with a diagnosis on the FPIES, but didn't.  In fact they kinda took the diagnosis away!  Sooo the results of the weekend with Miss A is pretty much a non result :/ They have no real idea what is going on but she did test "negative" (meaning not allergic) to soy, dairy and peanuts with skin prick tests so it does look like we are dealing with intolerances rather than traditional allergies but as to it being FPIES or not is the next question.

From here we are now waiting for a bed to become available at the RCH. She will be admitted for a minimum of a week and the idea is to skin prick test for more allergies (we have a HUGE list of foods to take for testing - yes we have to provide them because they're not normal foods to test for) and then if the foods are negative we will select a few to trial her on and the idea is she will be discharged with 2 foods and a formula for supplementation. How long this will take is anyone's guess. Usually foods are trialled individually for a minimum of 3 days before it is considered a tentative pass (and then usually left a week or two before any new foods are introduced to ensure there is no delayed reactions) so I can't see her being discharged in under 9 days, but then if she reacts and we need to go back to the beginning I guess we could be looking at a few weeks - that would also depend on how set they are on making sure she has 2 foods and 1 formula.

When will all this happen?? Not sure, we're waiting on a call. It sounded like they wanted her admitted yesterday (Monday) but it was too tricky with Nathans work, so it will be anytime in the "next few weeks". I'm hoping that it wont mean Aerynn will be in hospital for her birthday (2 weeks time) but if she is then so be it. Big party on discharge :)

I do have concerns about some things with the visit.  I don't want to think I know more than the Drs though, but why would they SPT neocate saying that they don't believe a child should react to neocate.  SPT's are for allergic responses, IgE mitigated responses... Aerynns reaction to neocate was over 3 days - it was an intolerance reaction, so I really do not understand why this was done.  I hope that they're not doubting her reactions.  I have photographs here that they were not interested in viewing of her in the middle of reactions to different things.  I have documented the times she has had tummy upsets, mucousy nappies, rashes, screams, not sleeping etc etc from different food reactions.  Even though I doubt myself at times with "should I push through" kind of things I KNOW she is reacting!!  I guess we'll see how she goes on admission.  I wanted to get that doubt out in the open to start with as it has been weighing on me a little.

While she is in hospital she will also be visited by a dietician hoping to make up some kind of plan for future food trials, a geneticist to discuss and investigate the Russell-Silver Syndrome suspicion and she will be vaccinated under supervision due to Williams reaction to the 12 month vaccinations.  

Ultimately I am excited to think that in a few weeks we will hopefully have some food she can eat without fear of being sick and a formula for supplementation...  But I'm dreading how she may react to those foods during the trials and the visit being drawn out while finding the safe foods and spending time away from the rest of the family...

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