growingupwithpku

The Wheels on the Bus Go Round & Round

School is here again and I want to focus this time talking about just that. We have made it through 5 years and stepping into a whole other world this year. For us middle school is a big, scary, teary, word. We are not gonna talk about that right this second, but we will soon.

Luckily, I kept Iann home till kindergarten, and where we live pre-kindergarten was not even necessary. So I taught him what I could at home untill then and held off as long as I could. For many, you may have to even rely on daycare. I would suggest doing the same thing we do for school, such as educating the staff as much as we do the schools. You may not also be able to hold them back or may not even want to, either way whatever you want to do it’s gonna be okay. I personally only kept him home, because I could, not because I was scared of sending him because of PKU.

School went as it would for any child, we sent lunch for a a few years, sent formula with him to school. He teachers had a small fridge in the classroom where he could keep his formula and drink it throughout the day. I would educate the teachers and whom else would see him like art, music and P.E. I didn’t take any chances. Only problems were parents always sent cupcakes when it was there kids birthday. So I kept snacks for him in the classroom.

We were able to provide some education by printing off packets, as well, though online information, and putting together a folder. In elementary this worked because they only have one classroom.

Then we switched things up on the school and told them they had to start providing him food. We all know we can compare prices and the cost of food. Start young so they will like it, we want them to have it, we want them to get filled up. They should be eating it at school, and they wanna go through the line too sometimes. Luckily its a state regulation that they provide for him so we set that up through the Cambrooke food lunch program. We also have to put a 504 in place just for food accommodations. Sounds a little funny, but not when they learn educationally his/her regulation of food, controls focus, and so much more depending on your child on that 504 plan and all those places to check off. They may also need it in place and need more time acedemically.

In middle School you have way more teachers, emails and links are your friend and a new evaluation for that 504 may be the next best thing after a couple months in after your child feels things out.

The biggest thing about schools is, they can try to get away with not doing. My son is pretty sweet and and caring and luckily the school has realized that I am only advocating for my child, but I have had to get pretty stern with people especially with my child’s first year in middle school. I especially had to tell them that anyone working with my child must be educated.

Back in Time

When I started this blog, I began the story of when it all started. Moved on to what was happening at that time with the holidays.

I want to get back to the beginning of when it all began for those just getting a fresh start with PKU. The first year with PKU, a newborn and a toddler.

In my first blog I told you about the experience I had with learning of PKU and the overwhelming experience it can be at first. At first, being the key word! You can let it get you down, or you can choose to run with it.

I chose to run with it. The best I could, it has been a real struggle, that is why I created the blog to create the tools for you to be creative and get ahead while they are young.

Here is what to expect, when they are babies you are going to need tools for the kitchen. Mostly common things like, just measuring spoons at first, most expensive tool you will need, is a scale to invest in, but my scale has lasted 11 years so far. So well worth the investment. During the first months you can only bottle feed, so breast feeding is not an option for us. That bottle feeding is a special formula for those with PKU. After the bottle and they move onto baby food that’s when you need to start measuring and counting the food and when it may seem to get more complicated for you.

You will either measure out by using measuring spoons or by grams on a scale. It really isn’t too complicated and once you start doing it everyday, it becomes a part of you.

It may be overwhelming for some but I will never complain about having to do something for my child or say that my child’s diet is an inconvenience for me or them, if they have an opportunity to be healthy and happy. You may feel frustrated at times and feel like it isn’t enough food for them to eat, or that they are still hungry after they are finished. I am not saying that it is going to be easy, it can be hard, overwhelming, frustrating, and you wish you could change things. I have been through it and in the end I always feel I really wouldn’t change him either, I just get frustrated for him that’s all but I would not change him and I am so glad he is happy and healthy. He is 11 and tells all his friends he has PKU. I couldn’t be more proud.

Holidays, & PKU

New Year’s is here which means we made it through the holidays. Thanksgiving, and Christmas means cooking for most, but especially for those who either have PKU, or, have a child with it.

Some people try to change the way they eat around a loved one, but I feel these are opportunities for a child to adapt to the real world. Every day we eat things that our child may want to try or experience and rather want to do that with other people or see it with others I do not change the way I eat at home. Instead I try to replicate what I eat at times with the low protein foods instead.

This is what we do for the holidays as well. We also just let him choose his favorites and make all his dishes that he wants to eat and make smaller portions just for him. This is the first year I made my son a turkey from his low protein bacon mix, he loved it and wants it every year.

Even baked it in the oven. It was the tiniest turkey you’ve ever seen, but it turned out great. You can do alot with their food you just have to get creative. We all ate the fruit salad out of his receipe book, I just added some apples and marshmallows.

Cherry pie for dessert.

We do the same for Christmas, instead he had blueberry pie, he likes collard greens, mashed potatoes, for Thanksgiving, potato salad for Christmas. Green bean casserole, olives, salad. Holidays are great, even for mine with PKU, he eats what he loves and does not miss out, we also do not feel as though he misses out. We gather for alot of food, but we make sure we make alot of his favorites so he has alot to choose from as well and he loves Thanksgiving for it.

Let us be thankful that we can be healthy and happy with PKU.

First blog post – The Beginning

This is the post excerpt.

FB_IMG_1433981750263

My Name is Pamela, and I am starting this Blog for other families who are familiar with PKU, short for Phenylketonuria. I have a 10 yr. old son named Iann who has PKU. For those of you that are not familiar with PKU, here is some information.

PKU is an inherited metabolic disorder, in which those with PKU are missing the enzyme Phenylalanine hydroxylase to break down Phenylalanine found in protein. Due to the body being unable to process the Phenylalanine it builds up in the body. Without proper detection after birth, and proper diet, it can cause seizures, can stunt growth and cause irreversible brain damage. The body will usually take Phenylalanine, using that missing enzyme, and convert it into tyrosine. Tyrosine is used in the body to create neurotransmitters, so those with PKU must drink a supplement as part of their daily diet to get the proper nutrients they need. They must be put on a diet for life, which excludes high protein foods such as meat, fish, dairy, cheese, nuts, beans, peanut butter. There diet depends on the level of tolerance, done by blood checks sent to the lab, low protein foods such as fruits veggies, and special ordered low proteins foods, such as breads and pasta. This diet also consists of measuring, or weighing and counting the of Phenylalanine intake even from those foods.

Now let’s start from the beginning, I got pregnant, and I was excited to be having a baby. For 9 months straight I puked, not just in the morning, but, at night too. I just kept reminding myself that this was what I wanted, he will be here soon. When it came time, and he was ready to arrive I was still throwing up and everyone always said the entire pregnancy, that means your gonna have a healthy baby. It was time to go home and, everything was perfect, then you get that call. That call you will always remember, but it’s kind of a blur. I remember the call, the women said she was with the UF hospital, and that they needed me to bring Iann to their facility, so that they could do some blood work on him. They said that they do this test in the hospital, and that his level was higher than normal and that they needed to do a larger test to find out if he had PKU. She might have said a few other things about it, and all I remember hearing was, if you feel yourself getting overwhelmed, you can call me. Well of course, I wasn’t going to call, I was going to call everyone else and FREAK OUT! So that’s what I did, and I remember then, it was a time that well it doesn’t seem to serious, it seems as though it is something they grow out of by a certain age, and that he will be okay.

The moment of truth came, and they took my baby, held him down, missed with a needle, that was almost bigger than him it seemed to me, drew lots of blood. (He was my first at the time) It was pretty heart breaking to say the least, to make him go through that. For what it is worth, I am thankful for the people that did everything they did. Iann was 7 days old when he got put on diet. Everything got explained to us, what to do, how to feed him, and this is a DIET FOR LIFE! He is not going to grow out of this, it’s serious! His life is in my control and in my hands now, but he 10! We have 10 years to talk about, and the future, to think about. He’s gonna take over, eventually be more independent, I may not always be here, so how can I prepare him, how can we prepare our PKUers?