Community Discussion Forum Adults and PKU Maternal PKU Reply To: Maternal PKU

Avatar of Heather

I’m new. Those of you that want to have families it is best to get levels down early,but if you are off and just happen to get pregnant starting strict as soon as you find out worked well for me. I hve two children. Now my son was born with Microcephaly because of maternal PKU. I was uninformed of what I had to do. I did what I thought was right but it was not good enough. My daughetr was a surprise to me. I was off diet but the second I found out I was pregnant I got the help I need to nott have the same problem. All turned out fine and she is as healthy as a horse. It was hard to stay on the diet but it was well worth it.
I have seen some of your numbers posted and they just look so high to me. I thought our counts were to be 2-4 or 6-8. Something like that. Is something different?

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