blood work

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    • I haven't done a level in almost over 2 weeks :( which isn't good since I'm suppose to do them every Sunday.

      Ugh, either I forget or I chicken out and don't want to do it so I say I'll do it the next night...which I never do. And my mom has stopped making me do it like when I was little, so if I don't do it then it doesn't get done.
      ~It's not about waiting for the storm to pass, it's about getting out there and dancing in the rain~
      Breanna Hardy 19 CPKU
    • Brea you are doing better than I was at your age which was a long time ago now but when I was sixteen I came off diet as the medical professionals recommended it and because I couldn't stand mixing PKU Aid and then had to mix the calorine in add water add favouring then I had to have ketovite tablets, kitavite liquid, furgon tablets, furgon liquid then a calcium tablets three times a day and a pint of cream a day yuck the diet was so hard in the sixties and seventies. It is so great that Kuvan is around so people can have a better life.
      debbie colyer
    • Yes Brea,
      You are doing really well. I do ok,but am way too inconsistant. If I think the level will be higher than I want to hear about I just dont do it and give it a week, be strict, and get the result I want to see! I am only cheating myself by doing that.

      When I was younger we only had bloodtests when we went to a hospital appointment, (every 3 months) for most of my childhood, so the whole thing of taking a test myself didn't start until I was well into my twenties. It wasn't a concept that was drummed into me and it took a real long time for me to even consider doing for my own benefit. It really only kicked in when I started the maternal thing! But now I get it as I see how much the levels fluctuate.
      Raelene
    • Rael, and what about diet when your baby is born? Is the diet as strict as usual? Because I heard something about young mums who got off diet when they baby was born...so I don´t know if it´s possible or if it´s better to continue...but sincerely, I can´t imagine my life without diet... :))
    • Maternal diet is very strict, normal diet for me is about 10 grams protein, but maternal is 3 grams.

      WHen I had my first baby by the end of the pregnancy I was on 22 grams so in comparison that was easy. I was still doing 2 bloods every week but after he was born I did them monthly again.

      I also breast fed him for 6 months. THis kept my levels controlled because you can tolerate more Phe when breastfeeding.

      When I stopped breastfeeding I stuck to a pretty strict diet and when my son was about 18 mths I was pregnant again. I had a miscarriage at 18 weeks. It was not diet related- the baby just died, possibly due to chromosome test. CVS.

      Since then I have had 2 more early miscarriages. So this is the last time I will try as I will be 40 soon and I thing age is related to miscarriage in a major way.

      After having babies I will stay on diet probably 10 grams protein per day because i believe it will be better for me healthwise. I am actually better at it now. Just maternal is harder every time in the beginning. Once I am pregnant it is easy, I actually like most of our food better and get a thing for fruit!
      Raelene
    • Don't think I'm that perfect ;) right now I think I'm purposely forgetting to do my levels. I was thinking about doing a level Wednesday and Thursday but I didn't want to do a level, so I didn't. But when I actually do a level I'm actually getting better at it! I don't know if I told you guys, but now after my mom pokes me I can get the blood on the paper myself. It kind of looks like a crime scene, but eventually the blood gets where it has to be and for the girl who a little over a year ago would literally kick and scream, I think that's a little impressive! I'm kind of thinking about not doing a level until my dietitian gets on me about it...just to see how long I can go without one. I know...childish...but I'm getting so sick of the weekly levels! I think that is part of the reason I wanted to get off of Kuvan way back in December. My dietitian told me like a month ago we could switch to doing levels twice a month and she still hasn't let me!

      Man Debbie, if I had to take that many pills/supplements I would have gone crazy!!!

      Rael I know what you mean. When I was younger if I knew we were doing a blood test I would load up on the formula. And yeah I think pregnancies in general get harder as you get older. My mom is almost 39 and pregnant with her 8th kid. Lately she's been having a very hard time with stomach pains.
      ~It's not about waiting for the storm to pass, it's about getting out there and dancing in the rain~
      Breanna Hardy 19 CPKU
    • 8 kids is a lot these days, but I am guessing it would be wonderful to be part of such a large family, for all of you kids as well as for your parents!

      I really hope you mum is ok and gets well soon. Pregnancy can have so many twists and turns. Sounds like you all look after each other pretty well though.

      Being pregnant is one thing, but looking after 7 others too! Wears me out thinking about it! ?(

      You always will worry about your kids no matter how grown up they may be!

      As for levels I am due to do one on friday and writing it down here so I will definately do it! ;) See I have to now
      Raelene