Community Discussion Forum Parent support what was your first reaction to pku Reply To: what was your first reaction to pku

Avatar of JENNIFER

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!

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