Hi all. My grandson who is just 5 days old was just diagnosed with PKU, I had never heard of it before. We are all still in a kind of shock. My daughter and her husband go tomorrow to a metabolic specialist for more testing and to see what kind of “program” they have to have for baby Dante. My daughter and her husband are both carriers and she is beside herself that she “gave” this to her son. This is their second child, the first a girl is two and she’s fine. I hope and pray that everything will work out and baby Dante will be okay. I keep thinking okay so being a “veggie” won’t be that bad right?? I’m just here looking for support and hopefully gain from what other people have to share. Thank you all, I will keep you updated on what we find out.
I know this all might be very hard for you, your daughter and rest of your family to understand seeing as it’s new, but given time it will just become a part of life. Here is the link to another post that I posted with a rough break down about what PKU is.
If you have any questions about this feel free to ask away! You grandson will be just fine, he will just have to eat alittle differently, check his blood and drink a special formula.
For myself, and my sister, PKU is just second nature. When I eat something I don’t even think about looking up foods in my phe book and measuring the food out, because I just do. I’m so used to figuring out how much Phenylalanine is in food before I eat it and measuring it out that I just do it on an instinct. My only advice to you, your daughter and all other family memembers is to stay strong, support your grandson, educate him about his PKU and let him know that it’s perfectly fine to be different. nAlso, let your daughter know that she did not ‘give’ him anything. This was just the way things worked out and it might take alittle adapting to, but her son will be fine. There is no way that she could have predicted this and it is in no way her fault!! nHang in there! nBreanna n16 (on Saturday) w/Classical PKU
Thanks for the kind words from someone so young you seem to have it together. I went with my daughter to the Metabolic specialist, her husband stayed home with their 2 year old. The Dr. kept saying – Normal Child, Speical Diet, that’s it. So that’s become my daughter’s mantra, normal child, special diet and it helps. I try to calm her down and let her talk it out and it’s a little better than it first was. It is a bit of a shock but now that he’s all of a little over a week (and very cute I must add) she’s kind of adjusted to it and it’s not a big deal. When he gets older and is off of the PHE formula then the Dr. said we’ll deal with the foods at that time. We were at the Dr.’s for about 3-1/2 hours. They had the Dr. the dietician and a nurse and were very thorough and answered all our questions and fears, they were extremly helpful and patient with us. It eased the situation a great deal. So off we are on the next leg of our adventure. His sister I think is going to be very protective of her brother, she already cries when he does…. Thanks for having this sitesite I found it to be very helpful.
I’m glad I could help. If your daughter is still getting upset it’s perfectly normal. My mother said my whole first year she had a very hard time accepting PKU and fully understanding it. I think I would be more worried if a parent didn’t cry and didn’t get worried about this. It sounds like your both dealing with this the best you can!
I don’t mean to be the bearer of bad news, but I noticed that you said ‘when he is off his phe fre formula.’ The phe free formula or metabolic formula is a life thing as far as I know. I’m 16 and still drink it, so does my sister and many adults I know. Since your grandsons body can’t convert Phe into another amino acid called Tyrosine he’ll have to drink this formula for life to get not only Tyrosine (which is an essential amino acid needed to grow) but for other nutrients aswell. From what I know the diet, formula and blood tests will be something that will follow him for life. But in my eyes that is okay because every year they are coming out with new and better formulas I’m sure that by the time he’s my age or even my sisters age they will have some great tasting formulas. They already do in my opinion, but hopefully they’ll have even better ones.
Keep doing what your doing and hang in there! nBreanna
My motehr found out I had PKU on the way to a New Years Eve party. All the packet said was MENTAL RETARDATION in huge bold letters. She cried the whole way to the doctor. I turned out amazing. I just finished my first year in college, have great friends (a little bit of a rough childhood because kids didn’t understand the disease), and as long as you keep him on the diet he won’t be a “veggie”. Far from it. If you guys need any advice or have any questions please contact me.
nMeaghan 18 w/ CPKU and loving life