Parenting PKU

As another "food centered" holiday approaches I can already feel my mind racing. Trying to think of ways to make Luke feel like he has choices at dinners and that he can feel included in all the Easter goodies. Chocolate is high phe, so I will be going to Micheals this weekend to get some chocolate molds to fill with his low-phe chocolate, I will bring some to dinners and some will be for his Easter basket. I am also going to try my hand at his special buns - he is a carbohydrate lover like his Mommy so I know that I will likely have success having him eat those.  I don't want to make it sound like we don't have marvelous families because we do! Our families understand, they always help us include Luke friendly foods and want to make the holidays special for him. We are truly blessed to both have supportive parents and siblings AND extended family who love to shower Luke with love & fun!  Luke is not trusting when it comes to food, this makes him VERY reluct...

Things I have learned as a PKU Mom  ( and as a Mom in gereral ) Never let your supply of formula run out (dry or the stuff you have pre-made) order and make LOTS! Lancets (the things we use to do the heel poke) are expensive but it's worth it to have the right one! Do not cheap out on a shaker bottle for making formula, it will leak or explode and that is  so not okay Plan ahead as much as possible - it makes life easier But plan for things to change People are amazing at offering love and support, ask for help when you need it but make sure to pay it back when you can There are people you can talk to somewhere in the world going though almost the exact same thing you are, sometimes it is nice to talk to someone who knows exactly what you are dealing with Don't hide or feel embarrassed about having to ask for different food choices but also try not to let it take over your enjoyment of what is offered It hurts some days to think this is a life long...

Well as most know we have been trying more and more of Luke's low-protein foods, I had blogged about him trying some of his little pasta circles  here . Well they have gone over really well, as has the low protein version of rice! Luke really enjoys it if I mix the rice with coconut yogurt (plain) and a bit of cinnamon, almost like a little guys rice pudding!  We tried the Eggz next and it was a bit more of an adventure then the pasta! Eggz powder comes in a bag and has simple instructions - add "non-dairy creamer" and let sit, then cook one side and flip. So easy.... yeah not so much. Okay the first one was a flop. I thought it would be more like normal eggs and be soft enough for him to nibble on, instead it was much to firm on the outside and not what I would consider safe for a little. So I decided to scramble them up like normal eggs, which of course they didn't do the way I am used to but this time I had softer pieces for him to try a...

Lucas having some applesauce with my cousin Amanda in BC   One of my worries when we thought about solids was that the "easy" feeding methods would not be something we would be able to use, things like food pouches and self feeding foods like rusks and puffs. Well that proved an unfounded fear as pouches that are only one type of fruit or a mix of low-protein veggies and fruit are ones I can pretty easily estimate the amount of phe. The puffs and rice rusks are low in protein, especially considering how little they weigh, which is wonderful because they make great distractions when trying to cook a hungry little guy some food. Back Left to Right : Bread mix for a bread machine, case of phenyl-free formula, Mushroom Burger Mix Front Left to Right: Amino-acid supplements, Lo-Pro Anellini, Lo-pro Rice So now that Lucas is ready to start having "more solid" type foods I ordered up what I consider the next step in his diet. One of the things I wanted t...

Well today I placed an order for what seems to me is the "next stage" of foods for Lucas. I have been putting off moving Luke to more firm and diverse solid foods until I ordered him up some of the low-pro options that will a big part of his everyday diet. Things like making him bread and putting the "peanut" butter on it, it won't be real peanut butter because 3 tablespoons of creamy peanut butter has his entire days worth of phe!! (crazy right?!?) So how do I order up this food? I go to a special website and it provides me with all their options of mixes, baking needs, soup bases, pastas, rice, cereal, cookies and more. I select what items I need to order (including his formula) and it provides me with a grand total. So far we have been able to order up all free items. These are items that are paid for by the government and I have had a couple people ask me why would it be covered? Well Lucas' food is a medical food  due to the fact that the protein has ...

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...