WOW-- it has been a while since my last post. The pregnancy went along pretty uneventful, except I had placenta previa. C-Sections are required when there is a previa, obviously, because the placenta is blocking the escape hatch. The C-section was pretty easy, recovery was easy and breast-feeding was just starting to click.
Davis Merrill W. was born on October 13, 2008 at 7:37am. He was 6 lbs 7 oz and 18 inches long. He is absolutely adorable!
Then... we got the call...
Our pediatricians office called to say that Davis had had an abnormal result on his newborn screening and that we needed to take him down to Children's Hospital and have it redone. His phenylalanine level was high, possibly indicating PKU. I had heard of PKU and new a little about it. I knew enough about it that I knew it was not good. I called my husband in tears, who was working an hour and half away, and he decided to come home immediately. I was at my Mom's house- so me, Davis, my Mom and Garrett headed down to Children's for the diagnosis that would change our lives!
It was confirmed the next day that he did have PKU.
What is PKU??? His body lacks an enzyme that is responsible for converting Phenylalanine (Phe)into Tyrosine. When high levels of Phe build up in the body, it becomes toxic to the brain-causing brain damage and mental retardation, among other things. Phenylalanine is found mostly in foods containing high amounts of protein. The Phe levels can be controlled by diet and he can maintain a normal life by following a very strict diet. The diet consists of a formula that he will have to drink for the rest of his life. This provides all of the nutrients and vitamins and calories that he can't get from food. His diet will consist of mainly fruits and vegetables. He will never have any protein (animal or plant) and starches may be eaten in moderation. Imagine a child going through life with no chicken nuggets, pizza, ice cream, corn dog, etc...
It really sucks- I know it could be worse- but it is pretty bad. It is something that he will have to deal with his whole life. I really worry about how he will be treated in Jr. High when kids are so cruel. And in college when he can't drink beer. And at birthday parties when he can't eat pizza at Chuck E Cheese or have cake and ice cream. And when he goes over to friends' houses to play and he has to bring his own food. I still cry when I think about those things and how different his childhood will be due to his diet.
We have to go down to Children's weekly for blood draws to make sure his Phe level is between 2-6. Over 6 is too high and could cause brain damage, below 2 is too low and could cause him not to grow. This week we were at .7- so we have changed his formula recipe to get it up. Two weeks ago it was 15 and I freaked out! Of course the level has to be high for a period of time to cause brain damage, but that is all I could think about.
Anyway when we go down to Children's I see kiddos that are worse off than him. It makes me feel bad to be sad about his diagnosis because it could be worse. I know that. But still no one wants something to be wrong with their child, no one wants their child to be different.
So that is where we are now- dealing with PKU. This blog will probably mostly focus on the dealings of PKU and the diet.
3 comments:
Hi, I am 42 and my sister is 44. We were both diagnosed with PKU shortly after birth in the United Kingdom. I have grown up with PKU. To explain it to others we compare it to Diabetes. It's nothing like it really, but people understand Diabetes more, and it's been around so much most people have heard of it. Because there are different levels of PKU and how it affects you, your dietician will let you know when introducing foods to you baby what his 'exchanges' can be. THe way we explain it is, with Diabetes, some people can get by with just eating carefully, others have to take tablets, and some have to do injections. With PKU it can be like this too. We all have to watch our diet, our problem is with a protein, diabetics is with Sugar. Some of us have to use dietary supplements (drinks usually), to top us off with the goodness we are missing by controlling our diet. And then some have to have such a strict diet most of their food stuffs have to come on prescription. My sister Karen has the really serious level and has to be really strict, I am only mildly affected and can be rather freer with my diet and hardly have to take much supplement at all.
To behonest there are so many food stuffs now available, when we were small there was hardly anything! We went to kids parties, Karen took her own lunch box, I just ate smaller amounts of things. Yes kids were cruel, but no more than if you have ginger hair, buck teeth, or something, kids will always find something to pick on, it is how you deal with it that makes the difference. Sadly because of the lack of knowledge when Karen was small, and the lack of availability of things she did get some mental damage, because of her having the stronger case of PKU and it affected her growth, so she is a tad small, but in other ways she more than makes up for it, she has a photographic memory, has educational qualifications and certificates coming out of her ears!!! But emotionally is still very young as it was thought best at the time in the 60's for her to live in hospital for most of her childhood so she because used to the regime and emotional support. other Mom's will understand another child having a nut allergy, or a dairy allergy, so explain it that your child has a protein allergy and it is just as dangerous, but there is not an 'epipen' injection for what Davis has, it's a sneaky danger and if he's eaten something he's not supposed to, you may not know straight away that it's done some damage. To be honest, what we learnt about it was the phe level is considered on a toxisity level, if it is permanently high then it will damage, but a minor blip, which is then brought back down again will probably not have been in the system long enough for it to have made any lasting effects. Me i'm fine, most people dont know I have anything unless I tell them, I do eat meat, in moderation, but tend to tell people I don't eat it much as I dont like the texture, it's easier on people that way than having to constantly explain. I also tell them I have a nut allergy to get out of eating anything with nuts. Most restaurants will happily offer me something nut free, or rustle something up real quick.
What i'm trying to say is yes it probably seems daunting right now, but as a pku survivor I can tell you, it will be fine. I have a University degree, have held down good jobs, have otherwise been fit and healthy, happily married, no problems getting pregnant etc. And there is no reason, with the right guidance from the start, why your little boy can't enjoy a happy, easy childhood just as I did. Oh and when we went out to the burger joints I ate the salad and drank water or orange juice. Just watch for Aspartame, diet drinks have this, and it is a real NO NO!
Good luck and keep smiliing. xxx
You may find this page, and in fact this whole website helpful. It deals with eating out and gives you hints about what Davis could eat at various restaurants.
http://www.shs-nutrition.com/lowproteinliving/consumer-information/pku_data_sheet_series
SHS are a fabulous food manufacturer who are constantly working in the field of PKU foods. I know of a boy who decided to go to Europe for College so SHS arranged to ship all his exchange foods to him!
Good luck.xx
I know you haven't posted in quite a while but I'm hoping you get this comment anyway.. I just had a son born on March 12th 2012 that has presumptive PKU. I was reading your PKU related posts and they just bring me to tears. It keeps making me think about how he will grow up as well with this diet. If you do get this I would really love to talk to you about the whole thing and get advice. You can email me at nj.mama[at]yahoo[dot]com. Or find my PKU story at http://operationmhood.blogspot.com/.
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