I'm pregnant! & concerned about Phe levels!

I’m pregnant! & concerned about Phe levels!

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I’m pregnant! & concerned about Phe levels!

July 29, 2012 in Uncategorized

I just found out I am pregnant. I was not on my diet prior to getting pregnant and my levels were around 18-20. The day I found out I was pregnant, I got a blood test to confirm it and immediately went strict on my diet. When the results came back I was 5 weeks. I found out on Friday and took my blood that sunday and it came out to 10.7! It's not as low as it should be but it dropped dramatically from the range I'm usually in. My dietician has me taking my level twice a week, Sundays and Wenesdays, so I'm still waiting for my blood level from last Wednesday. I'm now 6 weeks and I havent been eating anything I shouldn't so I'm hoping my levels have dropped even lower, hopefully to where it should be. Has this ever happened to you? Did your baby come out healthy with out any issues related to high phe levels? I'm really concerned, since I wasn't on my diet for the first 4 weeks. Any advice or previous experience would be very helpful. Thanks! Lauren

14 Reviews of I’m pregnant! & concerned about Phe levels!

  1. Registered: Jun 11, 2010

    Posts: 0

    Sittingbourne, INTERNATIONAL

    I haven’t ever experienced this no, but are you on facebook? there is a whole group on there with lots of ladies especially 4 PKU-ers who are on pre-conception diet, pregnant or just Mummies! If you let me know your name on Facebook and where you are from so I can find you, I can add you 2the group :) x

  2. Registered: Mar 27, 2010

    Posts: 0

    Landisville, New Jersey

    Yea I’m on facebook. It probably easier to look me up by email since so many other girls have my name. laurenchristie21@yahoo.com The only thing is not everyone knows I’m pregnant, only my parents & my boyfriends parents, we don’t want to tell the rest of our family and friends until I’m at least out of my 1st trimester. & everyone can see things on Facebook lol

  3. Registered: Jan 16, 2011

    Posts: 0

    Milwaukee, Wisconsin

    Im only 13 and Im not pregnant and not planning on getting pregnant soon :) but Ive heard tons where ladies that have PKU and that are pregnant their levels should be in the range of 2 and 4.

    For you case you should be eating, but just low in protein food and take some vitiams that you diation recommended. if she/he did. And stay on your diet!!!!!!!!!!!!!!!!!!!! Its very important!

    xxxxxx Jules.

    p.s. xxxxxx = hugs hugs hugs hugs hugs hugs hugs

  4. Registered: Dec 29, 2011

    Posts: 0

    Anacortes, Washington

    Hi Lauren! And congrats! Im a PKU mom of 2 NON PKU kids. When I was first PG i too was not on my diet. And I scared me because my level was at 33. I also happened to get pneumonia and went to the doc not knowing I was pg. After he xrayed my chest he came and told me that my blood test showed I was 3 weeks pg. I was immmeadiatly admitted to the hospital for antibiotic treatment and sent to Childrens Hospital in Boston the next day to get my blood levels down. I had to spend two months in the hospital trying new formulas and taking daily blood tests. when I was sent home I was almost 3 months pregnant. I continued to drink my formula and take weekly blood tests. The docs also kept a close eye on my baby making sure he grew right. Oct. 14 2001 a beautiful healthy NON PKU boy was born to me!!! within 10 months I was pregnant again only this was hard. I again found out at 3 weeks but was really struggling to drink as much formula as I needed to and the pku foods were unavailable to me at that point. The first 2 months I had only 3 blood level checks and was scarred like crazy! when I finally got ahold of a doc in San Diego they immeadiatly put me on high risk status. With weekly levels and nonstress tests (where the monitor the babies heartrate and your contractions) I was hopefull. But at 5 and a half months my baby stopped growing at the rate she was supposed to be. at 6 months we determined she would have to be induced soon. We were able to get another 3.5 weeks of pregnancy but she was born at 7 months 3 weeks. 4lbs 2 oz. 13.5 inches long. her head in my hand and her feet at my forearm. She has microcephaly (the brain is not as mature or the size of her age) all because of those first few months. I ended up blaming myself and have struggled a bit with it but I tell you this. In the first 3 months is when the brain and heart develope. STAY ON YOUR DIET! GET THOSE LEVELS DOWN! as for her heart we lucked out. she had an echocardiogram at 7 days of age to makesure there was no holes… there was not. Its so scarry to be pregnant with PKU BUT it can be done. She is 9 now going into a lifeskills program because she is still learning to recognize the letters of the alphabet, not reading, but can recognize shapes and her name. I dont mean to scare you I only tell you to encourage you to be STRICT on the diet. Its not easy and at times, miserable. BUT DONT STOP. Your baby is counting on your decisions your making NOW! Im praying for you! All the hope for you and your baby!  ps she is NOT PKU either

  5. Registered: Mar 27, 2010

    Posts: 0

    Landisville, New Jersey

    Thank you Nickelle, I really appreciate your honesty! I am working closely with my dietician to keep lowering my levels, so far they seem to keep going down little by little, my last level was an 8.8 It isnt easy following the diet so strictly when your not used to it, but I’m doing the best I can and drinking all my formula. I had to switch it already a few times because it was making my nausea worse. How high was your levels during your second pregnancy, if you don’t mind me asking?

  6. Registered: Mar 27, 2010

    Posts: 0

    Landisville, New Jersey

    Well I got great news yesterday! I got my level all the way down to a 2.9!! I haven’t had it that low since I was a kid!

  7. Registered: Sep 19, 2012

    Posts: 0

    Levice, INTERNATIONAL

    that´s great, LaurenChristie!!!:)) I´m proud because of you:)

  8. Registered: Mar 27, 2010

    Posts: 0

    Landisville, New Jersey

    Thanks Ria! It’s been hard but will be very worth it!

  9. Registered: Oct 27, 2012

    Posts: 0

    Wichita, Kansas

    I went off diet in jr high/high school.. didn’t follow it until I was prego with my first child. I was scared straight!! I wanted my baby to be happy and healthy and didn’t want him to resent me for being selfish. So, I immediately stopped eating all the stuff I can’t. My then-boyfriend was super supportive, he made sure I had food to eat that was within my limitations, my mom would do my finger pricks for me, and though I didn’t drink my formula like I should have I adhered to my food intake completely. I went to see a high risk OB, standard practice by my specialist. I had a beautiful healthy boy at 39 weeks gestation. I went off diet after I was done nursing him. Then became pregnant with my 2nd child. I had difficult pregnancy due to the person I was with. I wasn’t as strict with food as I should have been. I remember going to the lake and eating like 3+ hot dogs. Of course I felt horrible. But it was occasional, and I drank my formula this go around like I should have. And again at 39 weeks gestation, another healthy baby boy! It’s hard when you’ve been off so long, but if you’re child is worth it, you love him and wouldn’t ever do anything to hurt/harm him, that gives you the strength to stay on it. Having supportive significant other and family def helps!!

    **** CONGRATS ON THE PHE LEVEL- that’s awesome! Keep up the excellent work, Momma :)

  10. Registered: Mar 27, 2010

    Posts: 0

    Landisville, New Jersey

    Thanks Bubbly Blue! I know I’m about 3 months late but I just logged on for the first time in a while lol

    I am now 30 weeks pregnant and my boyfriend, dietician, and doctors are so happy with my levels during my pregnancy. I honestly think my levels are better than when I was a child, and my mom was very strict with my food! My dietician keeps on having to increase my protein so i can keep up with his growth. It’s crazy! My last level was a 1.7, so now she increased my protein to 14gms a day! I never thought I could eat this much protein and it would be okay. So far our son is healthy, I have an appointment with my OB this Monday and my next ultrasound is on Feb 1st, so my boyfriend and I are very excited for the ultrasound.

  11. Registered: Jul 21, 2014

    Posts: 0

    No Location

    I went off diet at age 9. I had my forst child at 22 with no diet. I now ave 3 grown children who are all non-PKU. my daughters are perceptually impaired. other than that they are ok even though i wasn’t on diet. i was lucky. anything you do to keep phe levels helps your child’s chances of being Ok.

    • Registered: Jul 21, 2014

      Posts: 0

      No Location

      my brother also has PKU. when his wife was pregnant they went to a genetic specialist because her children from her first marriage had genetic issues in addition to my brother’s PKU. Their son was born perfectly fine. he is now married with children and all are healthy.

  12. Registered: Feb 16, 2016

    Posts: 0

    birmingham, INTERNATIONAL

    h my name s Bernadette from the uk i was in the same situation as soon as i found i was pregnant i got in touch with my dietian and they put me n diey straight away my levels were very high so i stuck to mostly pku food my levels came down very quickly and i had a healthly little girl who now is 9 years old unfortunely she has pku because my huaband is a carrier of the gene also i have another three in the family my brother my sister and cousins daughter i hope everything goes well with your pregnancy and that you have a happy future

  13. Registered: Sep 29, 2016

    Posts: 0

    No Location

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