Attitude · Blood Levels · Diet Compliance · Food · Kids · Living with PKU · Moms

Are you sitting down?

My mom tells about her experience having a child with PKU


“Are you sitting down?” was his first question.

My mom was 24 years old. She was sitting on the couch nursing her brand new baby girl, when she got a phone call from a Doctor Ronald Scott from the University of Washington.

“Yes, I am,” she replied.

“Do you have a paper and pencil?”

Dr. Scott then proceeded to explain to her that her perfect little girl had a disease called phenylketonuria, or PKU. There was a problem with her daughter’s liver and she would need to be on a diet for life.

My Mom has always taken a positive outlook on my PKU, but she remembers it being hard in the beginning.

“After that first call from Dr. Scott I just balled. We had a normal little girl. We thought you were perfect, and to find out you were not was just devastating.”

Dr. Scott said he needed to see my parents and me right away.

Looking back, my mom says, “Thank heaven my parents were there.” Her Dad drove her up to Children’s Hospital for a blood draw.

Her mother, who worked with special needs students professionally, and lived through the discovery of PKU and its treatment, told her, “I think I’ve worked with PKU kids before, it will be ok. I think there’s a diet.”

My mom with baby me!

My Mom remembers their first appointment with Dr. Scott.

He began by saying, “Start saving for college.”

My mom clarifies that Dr. Scott did inform them of the seriousness of the disease. “He didn’t throw any punches.” Not following the diet can cause mental retardation, so it is very important that parents understand the necessity of the diet. But the bottom line is that if PKU chlidren do follow the diet, they will be perfectly normal.

But following this diet proves difficult. “The toddler years were the hardest times,” my mom remarks. “Church nursery was a nightmare.” She had to try to make sure the caretakers didn’t give me fishy crackers, cheese, and even graham crackers–normal snacks any child would like.

Things got better from then on, however. “Elementary school was pretty smooth – I had to talk to the teacher before hand, send her lunch every day.”

My mom faithfully took me to PKU clinic at the University of Washington every month. She tells me, “If I hadn’t of had PKU clinic once a month you probably wouldn’t have done so well.” There I attended a nutrition class for the kids while my mom went to parent group. “It was nice to talk to people who had a child with the same condition,” my mom says.

PKU is certainly a serious disease that can be inconvenient to treat. But my mom’s words to new mothers are, “stick to the diet and you’re gonna have a normal, wonderful healthy child.”

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15 thoughts on “Are you sitting down?

  1. This was very interesting to read and to know how harad it must have been for your Mom and Dad in the beginning and to know that you are such a wonderful young women who truly knows how to take of herself and is not afarid to let others know how to help.

  2. This is a very educational blog. I love the first person account and how much hope it gives to other people with PKU. You obviously take really good care of yourself–your example is a fantastic one. Hope you keep building on this blog and that others will read it.

  3. It was great to read your personal story. I have never head of PKU and I am interested to keep learning more as you post more information. What a great example you are and a help to many people. Thank you for being so honest about PKU.

  4. This was a great post! It was interesting to read about how you and your mom have dealt with PKU. I have never heard of PKU until I read your post, so thanks for sharing!

  5. Thank you for posting your story! I have a 14 month old daughter with PKU and this gives me hope that she will be just fine in spite of it.

  6. hello, sint din ROMANIA,
    am citit povestea ta ,si eu am un baiat pku are 24 de ani,aici e foarte greu nu avem medici specializati,nici dieteticieni,alimentele speciale le cumparam din Germania,baiatul meu are retard pentru ca a fost diagnosticat doar la 14 ani,tatal lui ne-a parasit cind copilul avea 6 ani,singura ma zbat luna de luna sa achizitionez alimentele de care el are nevoie…..daca esti interesata de povestea mea scrie mi dana_evergreen@yahoo.com

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