what did you first think when you got the call from the hospital saying your child has pku ?
I had no idea what it was but it sounded serious. I was scared but my husband is my rock. I also felt very guilty. But Easton is happy and we’re thrilled to have him. Why do you ask?
It’s a day we will never forget! The first call was very confusing, probably because I only heard some of it, ( Dept. of Health, diet, mental retardation) The trip to Hershey was a little more calming, but then there was an insurance mix up. So of course we went through the why us? We just wanted to enjoy our beautiful new baby and we now had all of these worries and a 4 year old trying to adjust to her sibling and very stressed out parents. Then we went through who should we tell? when should we tell them? How will people react? It took us about 3 months to feel somewhat at ease about understanding the diet and explaining it to people so it makes sense (I don’t think we’ll ever be totally at ease witht he diet) now she is 2 years old and doing quite well – sometimes I think better than us!
Hi, you all probably know me by now since I give out alot of input but for those of you who don’t my name’s Breanna and I’m 15 and have CPKU. I just happened to read some of your post and noticed some of you mothers seem alittle worried or scared about what the road with PKU will hold and I thought I’d give my two bits worth. Your children will all be fine, if they follow their diets they’ll be happy, healthy children. I may have had a few rough roads where my levels were alittle higher then they were supposed to be but I’m still totally happy and healthy. I’m like any other kid out there and get pretty good grades and I love to dance! I think one good thing about PKU for me is I think I have more tolerance for people with genetic disorders or other things like that then others my age because I know how it is to live with a genetic disorder. I know it isn’t the end of the world and I will surive but I also know sometimes it isn’t easy (but in the end I always make it past the obstacles). nBreanna
I was very scared to hear about my daughter having PKU. I had never heard of it b4 and i didnt know how to react until i tried to explain it to others and i cried because she is my first and only child and i am only 20. i thought it was hard enough tring to take care of a child period but with this it just seems harder.
When I first heard that my son had PKU I was terrified and could not understand. I felt like I had been cheated out of a normal child. HE is our only child and we love him dearly. Almost four years later I am thankful for having PKU be a part of our lives. It has changed the way I view others and people that are not “normal” if there is such a thing. I now try to educate everyone I meet about PKU. People are only scared of things they don’t know. PKU is my lifes platform and I am in a career that I am in contact with many people. I know our journey as parents has only begun but it is all we know so to my husband and me it is “normal”, as with any child life will throw you curve balls its all in how you catch it. Tessa
my name is Keisha, I had a doctor ring me when my son was 2weeks old he told me that my son had phenylketonuria and i was like he has phenyl what . but even if he had of said pku i wouldnt of known what it ment. it didnt really effect me to much but until he started solids that was really hard but we are doing ok now.
When we got the phone call about Addie. The caller ID said Denver Children’s Hospital. I’m like they want money. We almost did not answer the phone, but something made my husband answer it. They asked for me. I was in shock,after they told me. Clinton had to take the phone away. My thoughts were Not, us we have one child with HUGE problems. We do not need another one. God is only suppose to one problem to a family. Then the punch to the stomach was harder when they said we were to come right away her levels were extremely high, higher then the geneist ever saw.and breastfeeding was a poor option to sick to.Our extended families still don’t realize how difficult it is. We have not began the hard stuff yet with Addie PKU.
I just wanted to give my thoughts on breastfeeding. I was my mothers third child and first with PKU. When I was born the doctors told my mom to stop breastfeeding right away so she stopped when I was 9 days old. Where will all my other siblings she breastfed for atleast a year. When my fourth and fifth sister came along my mom thought they would have PKU so she did alot of reading to see if there was anyway to breastfeed. They did not have PKU but when my sixth sister, Erica, was born she turned out to have PKU and my mom was determined to breastfeed.
My dietitian at the time was very against it (but she was against alot of things my mom wanted to try). But my mom did it anyway and my sisters blood levels came back just fine. She used what is called the Supplemental Nursing System (SNS). I’m not a pro at explaining this since I was only 8 at the time but basically my mother breastfed my sister while wearing this device which basically fed my sister her formula while she drank breast milk. So NEVER believe doctors, dietitians etc when they say it’s not possible because it is very possible! You can go to: http://www.mdhardy.net/breastfeeding.htm nand read my mothers story (the first one) and stories from other mothers of PKU children who successfully breastfed.
I just thought I would post this to tell you and other new PKU parents that IS possible to breastfeed a PKU child. nBreanna n16 CPKU
Everyone is different in their own special way. Even PKUers. Your mom may got to enjoy breastfeeding. Addy levels were so high the docter did not want to wait to see her a week later. She wanted to see her within 24 hours. The doctors recommend that I did not continue nursing for Addy’s sake. When you become a mother you will have a chance to experience the decisions that a parent has to make regarding her child or children. And it is not the same view you get as a child,or a sibling. nBrandi