Today I took Beckham for a second blood test. It was awful. They blew his vein on his first arm and then on his second arm they couldn't get the vein. They were digging around in his arm so much that blood was coming out where they had put the needle in. It took no less than 3 minutes and then lab tech was almost in tears. He screamed harder and louder than I have ever seen him and his little fist was bright red from the little tourniquet being on for so long.
It broke my heart.
I have good news though!!! According to the newest information I have it seems like the diet for our kids might only be necessary until about the age of 6 when the brain stops developing and changing. From what I understand the first 6 years is when the permanent brain damage can happen. The even use to take all PKU kids off diet at the age of 6. They now recommend that they stay on the diet for life because high levels makes them a little "off" as adults. With my kiddos having levels that are significantly lower though my understanding is that after the age of 6 we probably wont have to worry about their diet to much.
Yeah! I'm sure the info I will find out tomorrow might change that and I really want to talk to Dr Arch about that but it seems to be the case. The will still have to have annual blood draws to make sure they are staying below 300.
Everything depends on Beck's results from today's test. He is healthy and he hadn't eaten for 2 hours so it should be a very accurate test.
Ive got a good feeling about it!
5 comments:
Poor Becks! Poor you! I wouldn't have handled it very well. From now on, totally make John go.
So sad! Poor Beckham!!!
Good news though...about the diet! YAY!!! Praying for good numbers! You have been in my thoughts A LOT lately!
Oh how awful! I would have been screaming louder Than Becks at the tech to get a compentent person in there to do the draw!!!!!!!!!!!!!!!!!
poor little guy, and poor you. my arm hurts just thinking about it. when Makaio was his age I had to have blood drawn and I passed out cause I couldn't handle the tears or the stress. Way to go for you to be strong enough to go through this time after time.
I hop the numbers are low and that the diet is only for the first 6 years. that would be awesome! Good luck
Poor Beckham! That's literally my worst nightmare, a nurse digging for a vein. I pass out every time.
By the way, I've learned a lot about PKU through you and appreciate you sharing your feelings about the ups and downs of it.
I thought you should also include those same posts in your hyperphe food blog. Other parents need to here your sentiments and know they're not alone. You wouldn't have to put forth and effort than what you already have because they're already written!
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