We had a clinic with our Leeds doctor at Yorkhill last week, she is always reasurring, even when she doesn't know the answers we trust her judgement. We had a very interesting chat about the allergies and she is up to date with all the latest ideas about why some kids post transplant get them. Although she was honest and said she can't give us any real answers it felt great that someone was acknowledging the link with Erin's meds, the team in Yorkhill said this was unlikely but my own research pointed squarely at the immunesuppresant. The group most likely to suffer these allergies are normally transplanted very young (6-18 months) and had Billiary Atresia (as opposed to other liver diseases). They don't know for sure why but it seems Tacrolimus (or Prograf is its the brand name) affects the immature guts of these kids and makes it leaky to allergenic protiens that wouldn't normally be able to enter the blood stream. The problem is we don't know if it's something that will improve or get worse with time as the kids who have shown these allergies are still so young as transplants have not been done in such small infants for that many years. The only thing we might do if the allergies become unmanageable is switch to a different immunesuppresant med but this is not a descision to be taken lightly. Erin's liver has been so happy and stable we don't want to rock the boat, she has already had a bout of significant rejection. Also the only alternative medication Cyclosporin has it's own drawbacks in terms of side effects so it might be a case of out of the frying pan and into the fire.
So for now we are awaiting more allergy tests. We had an appointment for next week but this was cancelled and rescheduled for Novemeber grrrr. There are a number of things she needs tested for and we've still not had a proper consult with any immunologist so I'm mightly peeved its taking so long. When I complained at the length of time this consult was taking to schedule (given the fact we have been waiting since March) our not-so-favourite doctor in Yorkhill said there were plenty of families in our shoes and waiting longer........so glad she's got our back........
In non liver related news this is what has been happening in Erin-ville......her speach is coming on in leaps and bounds. She woke up singing Karma Chamelion this morning.......then spent all day telling me lots of stories. Is utterly obsessed with Dora the Explorer. Loves dancing to anything the vaugly resembles music. When she wants something badly she says pease pease pease pease pease mumma, peeeeeeeease. And is all sorts of other general cuteness. Still not sleeping mind..............
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| who looks like a crazed artist? |
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| choo choo fun with Gran |
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| Buddies splashing in the North Sea |
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| Safari Park fun |
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| Cool |
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| my cleaner/native american |
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| double swinging |
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| Enjoying a very wet Safari day out with best friend Kate (& respective Dads) |
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