Parenting PKU

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...

Good news today is that Lucas got to go up a bit in his phe tolerance, he is now at 600 - 610mg phe per day. Woohoo a nice early birthday present for Lucas. Well by request here is a list of foods people have been curious about the phe content! One egg (boiled) = 715mg phe Mars Bar (full size) = approx 140mg phe Grilled Cheese Sandwich = approx 610mg phe (if made with a kraft cheese slice) Budweiser Beer = 72mg phe Spaghetti (noodles only) 1 cup cooked = approx 440mg phe Ritz Crackers (1 cracker) = 10mg phe Celery with cheddar cheese = 8mg phe for celery & 1375mg phe in 100gr of cheese Tim Hortons Muffins = 275 - 330mg phe  Lucas eats 150mg of phe at each of his 3 meals and then about 75 mg of phe per snack.  So as you can see there is a reason why dairy, meat, and gluten are no go areas for Lucas on a regular basis! If you have any questions or want to know a different food let me know!!!

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...

Doh! Well I know it was bound to happen at one point or another!  I calculated Luke's phe on the fly and got it a touch wrong, darn it! Saturday when I tallied up his final numbers in the evening I realized I had gone about 20 mg of phe over his limit.  At first I was super upset and mad at myself but I calmed down and told myself that it's done & I cannot change it now. Really with his low levels last week this should not make a difference. It is less then 4% more then his usual amount, so it is not like I doubled it. Well I did the heel poke this morning and tomorrow first thing I will take it into the Lab. I will be very curious (and slightly anxiously) awaiting these results!

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...

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...

I want to take some time to say thank you and shine some light on something very important - you. Now I don't think I could ever be able to clearly and completely get people to understand how much it means to me to have so much emotional support. It has been incredibly amazing the love that has been shown to Lucas, Jeff and I as we have started this adventure that is our new life.  By talking to friends, family, friends of friends, family of friends, friends of family and so on and so forth, I have discovered so many people that are willing to listen, to share their stories or struggles and to lend support in any way - big or small. It has nothing to do with a grand gesture, it honestly could be a simple like on a Facebook post or a comment about this blog. It is, to me, a show of support. Thank you. Thank you for reading about Luke's PKU and to those who have offered support as I get my feet under me in this amazing thing called Motherhood. I cannot express how much it...

It feels so good to say that we have had safe zone phe levels for one week now!!  I got a wonderful call on Monday about Lucas' phe levels being 133 as of Thursday the 22nd and it was so wonderful to hear the dietitian even express how happy she was that we seemed to have hit the diet plan on the right mark. Even better was the call I got yesterday saying that Luke's phe level had gone from 133 to 221!!!  We are so happy to have Luke in the safe range of phe levels and he is gaining weight so well! This is a very happy place for us to be and we did not make any diet changes this week! So all in all I think it is very safe to say we are excited for this and look forward to hopefully being able to keep his levels in this range for awhile.  Luke was happy to hear his phe levels where so great <3

We started a new diet plan on Friday the 16th that was a big deal, it was a big step. We went up to a very high amount of breast milk, high enough that since that Saturday he had only had phenyl-free formula fortified breast milk leading up to the Tuesday following that diet change. We had been adding the phe-free formula to every bottle of breast milk so that Luke gets the extra calories he needs to catch back up on his weight growth.  Well as of Monday the 19th he weighed in at....  9lbs 6oz!!!   *Cue Mommy doing a happy dance in the hospital and praising her big baby* The dietitian was pleased with this weight increase and we just needed to wait to see what his levels are from his Sunday heel poke following that change. The Sunday heel poke would reflect 3 days at the high level of breast milk and when we got those results we would have a good guess as to how high his levels had gone and make a new adjustment. It seems like a great thing that we went al...

Let me start by saying that, as much as I like to talk and talk openly about anything and everything now, I used to struggle to voice my opinions and questions to medical professionals. I am not sure why, maybe in my earlier years I used to think they are the ones who went to school forever so they must know everything about what I need them to know about. Well I do believe many doctors have a well rounded education, I also now know that we need to voice concerns and it is okay to ask the doctor to explain themselves and/or explain how I am feeling about what is going on.  Well I have been struggling with trusting Luke's metabolic team since before Christmas but had kept pretty quiet about it, thinking that they are the experts and they will let us know what needs to be done.  Since Christmas Eve Luke's phe levels have been well below the "safe" range which is not immediately dangerous but it also not ideal for helping him grow. These low p...