The Monday after Jeff and I found out that Lucas had PKU we went into the Stollery Hospital in Edmonton to meet with Melissa and the rest of Lucas' team of doctors. Lucas has 2 metabolic genetics doctors, 2 dietitians (including Melissa) and a few resident doctors.
First they sat us down and did an in depth family tree for both of us and asked us many questions about family and siblings. We learned that there was a chance that all of our siblings would be carriers of the PKU allele but the chance of them meeting another PKU carrier (and therefore deciding to have kids) is 1 in 2,500. At the moment there is no way to screen for a recessive PKU allele so there is no way to know in advance if someone has the recessive allele.
We got a lot more information on what PKU is (see here if you didn't read the introduction), how it will effect Lucas' diet in his long term future and what it means for the immediate future. We discussed the formula that Lucas will be on and what ratio of breast milk to formula he would need in order to grow. Also we discussed the heel poke tests that Jeff & I will have to do and send into the university, how often would we need to do the test and where to take it.
Because of the heel poke test Lucas will have very sensitive (and tender) feet, so as a comfort to him we ask that no one play with his feet or toes. This prevents anyone from causing him unnecessary pain. The tests are currently 2 times a week, but we look forward to going down to once a week in the near future.
We will be in very close contact with the dietitians for all of Lucas`life as they will be the ones to set how much protein he can have and still keep his phe at a healthy and manageable level.
First they sat us down and did an in depth family tree for both of us and asked us many questions about family and siblings. We learned that there was a chance that all of our siblings would be carriers of the PKU allele but the chance of them meeting another PKU carrier (and therefore deciding to have kids) is 1 in 2,500. At the moment there is no way to screen for a recessive PKU allele so there is no way to know in advance if someone has the recessive allele.
We got a lot more information on what PKU is (see here if you didn't read the introduction), how it will effect Lucas' diet in his long term future and what it means for the immediate future. We discussed the formula that Lucas will be on and what ratio of breast milk to formula he would need in order to grow. Also we discussed the heel poke tests that Jeff & I will have to do and send into the university, how often would we need to do the test and where to take it.
Because of the heel poke test Lucas will have very sensitive (and tender) feet, so as a comfort to him we ask that no one play with his feet or toes. This prevents anyone from causing him unnecessary pain. The tests are currently 2 times a week, but we look forward to going down to once a week in the near future.
We will be in very close contact with the dietitians for all of Lucas`life as they will be the ones to set how much protein he can have and still keep his phe at a healthy and manageable level.
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