Parenting PKU

Very happy to report that Lucas has safe zone levels (finally!). As of Fridays blood spot he was 252 which is my personal favorite area for him to be in at, as it means we have some "wiggle room" on each side if his numbers start to vary again. For this to be considered balanced we would like to see three consecutive safe zone numbers. Why? That would mean we have found a tolerance that his body is able to keep up with. The good news too is that he is tracking just fine on the weight charts and we can stop worrying quite so much about his weight gain. Before it was once a week weighing him and measuring him, now we are down to every 2 weeks!! Hope everyone is having a great July!!

Hey all!! First a small update on Lucas: we still do not have his phe levels balanced out but we are working hard with the dietitians to get past this current growth spurt! I have a feeling, call it Mommy instinct, that his next levels we get back on Tuesday will look much better. But I wanted to drop some quick facts about PKU that people have asked me recently. I love when people ask me about Lucas' current levels and ask me PKU questions so don't be embarrassed or worried about asking me anything about it!!! Luke will never out grow his PKU We may decide to try one of the current drug options in a few years to improve how much food he can eat but it is not something that is cured (yet......) Everything Luke eats and drinks  must be recorded and counted in a daily diary Some foods are very low phe naturally (apples, grapes, pears, and more) so he can eat a lot more of them then some foods that are higher (potatoes, peas, cereals) and some proce...

We had been blessed with some very stable safe numbers for Lucas for a nice while, it was glorious and I actually did not mind hearing from the dietitians on a weekly basis. However Luke had a sharp dip in his levels at the end of May. So we upped his phe intake and waited for the response to that hike. Well it wasn't enough so we increased again and waited. Bingo. Got the number! Nope, the next spot came back higher then expected so we dropped his intake and waited to see the response. Nope now his level was too low again (not the normal response) so we kind of scratched our chins but made a new change and waited again. Nope, still too low! What the heck is this baby doing to us?!? The problem is how "far behind" we are once we get his levels, anywhere from 3-6 days behind to be honest (Canada Day added an extra day of course). We do a heel cut, take the sample, send it in...then wait.  I actually have not the foggiest idea what this next blood spot level ...

Yesterday, April 24th, we had Luke's solid appointment at the Stollery Children's Hospital in Edmonton at 8:30 am (early for getting everyone presentable and packed up!). We got to meet the most recent addition to the Metabolic Dietitian team, Sydney, who I have been emailing and chatting with for awhile now but hadn't met in person. She is as much as a sweetheart in person as she sounds on the phone.  We started off by talking about Luke's growth which has been spot on (woo!!) and he is gaining weight at just the right pace. Also he has maintained safe zone levels!!! Good job Lucas!  We found out Lucas' phe tolerance is between 320mg and 360mg.  His current average is 335mg of phe a day. Then we got into the learning aspect of our visit. Basically next time you see me say "count protein" you need to throw something at me because there are varying amounts of phenylalanine ( phe ) in different kinds of proteins. Below is a break down...

Luke at 3 months old Well it has been a long while since my last blog post and that is partly due to the fact that things with Luke's PKU have been pretty "quiet" the last while. We were exceedingly happy to go down from 2 heel pokes to only 1 heel poke a week. This is especially nice for me because we chose Sunday as the day to do them, and this is a day Jeff is home to assist. Luke is so tough he rarely cries now! These are some photos I found online (no this is not Luke) which shows what the heel poke looks like: 1>                  2> 3> First we have to warm his foot in a warm face cloth, then we swab the heel with an alcohol wipe, then Jeff starts making silly noises & faces and I use a lancet (like the ones pictured in #2) to "poke" his heel which makes an incision like in photo #1. I then put the drops of blood onto 2 of the circles on his blood spot card (like photo #3) until they are ...

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...

Fourteen days of safe zone levels for Lucas! What a fantastic feeling &  along with the great feeling of safe zone levels we also have the great news that we still have  no diet changes in over  2 weeks ! I am very relieved that we appear to have found a good place with Lucas' diet, it means he is getting all the protein he needs; whole protein from breast milk and the Similac formula and also the phe free protein from his PKU formula. We have a "big" appointment with his Metabolic team of doctors and dietitians on Wednesday next week and there is talk of us learning about his current tolerance, which I look forward to hearing and sharing! I have to admit that the day leading up to a phone call from the dietitians I tend to start feeling anxious, wondering if his levels have changed despite no changes in diet and just a general worry. This makes me remember what fellow PKU parents have told me; "don't let the numbers control you". I have also had p...