Well as mentioned in past posts we had a big appointment with Luke's whole team on Wednesday and it has taken me a bit to write about it, mostly because I am still trying to work through it in my own mind. It was by far the longest appointment we have had - even longer then the original introduction. We talked with Melissa, Luke's main dietitian first for about 45 minutes and she took all Luke's measurements and plotted him on the charts. We have Luke up to the 25th precentile for weight, which is good news, he is the 50th precentile for height and when you plot his length and height combined he is 25th precentile (therefore long and skinny - sound familiar Matt?). They are pleased with his growth and don't believe there will be any problems from when his levels were low for so long.
Then came talking about his current intake of protien and phe. This is where I tend to get emotional because even though I know that this is a lifelong disorder, I think I am like many who face things like this and just hoped it would been less restrictive for Luke. But that's not the case. His current phe tolerance is 325-350 mg/day, I had NO idea what that translated to when she was telling us about it and so asked where on the PKU "scale" that puts him. There are three "classifications" she used as examples- classical is the most severe, then mild and then hyperphe (which has the highest tolerance). She explained that Luke right now falls somewhere better then classical but less then mild. That kicked me hard.
I know we all want the most for Luke, everyone wants his eating to be easier rather then harder. I had gone into that appointment with stupid expectations that Luke would be hyperphe and maybe we would be able to just avoid high protein items and the rest he could have larger quantities of. But that just isn't the case here, and a big part of what I had to work through before posting this was that this is what it is, no one can change it.
We then met with one of his metabolic doctors and talked more about diet and talked some about Kuvan (a medication that has been developed for PKU patients) but I will get more into that in another blog post. This second part of our appointment also took 45 minutes so we spent an hour and a half with his team.
Luke's Current Tolerance
Right now his tolerance (as I can best figure out) translates into 6 grams of protien a day. 6 grams. Gosh that isn't easier to type then it is to say. I used online understandings of phe -> exchanges -> protein amount. If someone in the PKU community comes up with a different number from his current tolerance please let me know via email or leave a comment!!
That 6 grams is really not a lot. But it is more then some PKU patients get. I don't know how much, if at all, this will change in the next few years, Melissa said this is likely to be his tolerance for the next few years UNLESS he is still playing "catch up" from being a preemie, if that is the case then she says his tolerance will be less.
Well that's about all I can write about it right now. Still feeling very emotional about the news and cannot stop looking at food labels and wincing as I cross more and more off what he will be able to eat. I do know this is manageable and that we will make Luke so many of his own special foods, treats and he will be a happy healthy boy. I just need to grieve the loss of a silly idea.
***Good news is we went down to once a week heel pokes! So little man's feet will get less abuse now.***
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