Hi- i have twins ( boy and girl)and my sons newborn pku screen came back elevated at 5. of course i was a wreck. he was retested and his level was a 4 so they wanted to see him a month later. his level came back at 6.6 and then 6.9. he is 6weeks old and started 2 bottles a day of phenex.
looking for others with mild hyp to share with. was told he would maybe be on modified diet when he is older, maybe a vegetarian.
any advice would be great.
Hi, I don’t have Hyperphe but I have Classical PKU. It’s basically the same except my diet is more restricted then your sons will probably be. I have an 8-year-old sister who has PKU too and 5 siblings who don’t. If you ever want to talk to me or have questions feel free to write! nBreanna n16 CPKU
I have 2 children with hyperphe. My son is 5 (starting kindie next week) and my daughter will be 2 very soon.
My children’s phe levels tend to range from 4-8. Rarely do they go below 4. Both of my children are allowed 1 serving of protein daily (1oz meat, egg, cheese). Other than that they are on a fairly typical diet (pasta, breads, McDonald’s fries!) I’m teaching my son to advocate for himself, especially about telling people he is not allowed products with aspartame.
My in-laws tend to think that since my kids don’t have 2 heads, they also don’t have hyperphe, and therefore can eat whatever they want – it’s just not true. We watch what our kids eat, keep diet diaries and have frequent blood tests.
I have an older brother with CPKU and this whole hyperhpe stuff seems even more frustrating at times since my experience makes me so wary of the uncertainty of the diets. Then again, there’s a huge difference between being the sibling and the parent…
Hi, I am a 36 year with hyper-phe. While right now it seems overwhelming, he most like will be on a less harsh diet, as I have been. Right now you have lots things to take in, the best thing I could tell is listen and question the doctors and nurses at your clinic. And enjoy your new little ones. Congrats.
Can I ask you a personal question? I read in your profile that you have 2 sons. Were you on a special diet for your pregnancies?
My children’s geneticist is constantly discussing my daughter’s possible future pregnancies as being very high risk for resulting in mentally handicapped children. My baby is only 2 so it’s hard to even imagine that yet. I’m hoping they’ll invent a small white pill that will alleviate any potential harm her elevated phe levels will have on her own babies.
I have met 2 CPKU moms who maintained their diets and had “typical-developing” children. With hyperphe some of those strict diet lines are very blurred.
I just wanted to drop by and say welcome to the group, I don’t think I’ve seen you post before. Also, congrats on your little boy starting kindergarten! That has to be exciting, my youngest sister (I have 4 little sisters, an older sister and brother, one with PKU) started kindergarten last year.
What I really wanted to say is that your daughter will beable to have perfectly fine children if she follows her diet while she’s pregnant. BUT, I know you directed that question to Deb and she has done it before so I’ll leave her to fill you in on more details. I’m just telling you what my Medical geneticist, dietitian and genetic counselor have told me my whole life and what I’ve heard for women with PKU who have had kids. nBreanna n16 CPKU
Thank you for the support and input. My son is now 2 months old and has been on the phenex formula for 2 out of his 6 bottles a day. his latest bllod work hi sPHE levels were 3.7. Now its just monthly blood work and monitoring when foods are introduced. Our genetisist told us about a pill that may be coming out for hyper-phe Anyone else hear of this?Dawn
I’m glad to hear that his levels are staying down. Is your son drinking the unflavored Phenex? I was just curious because my little sister drinks Phenex II unflavored.
I have heard of some pills that they are allowing people with PKU to take that would allow them to eat more phe. I think some are called Kuvan, Phebloc or Neophe, but I’m not sure. I personally have not been asked if I want to try this, but even if I do get asked I don’t think I will want to try this. I personally don’t think I want to try this because I was told that it doesn’t work for everybody. I’m not sure if I want to experiment with my body like that. Plus, I’m doing fine with the diet so why bother messing around with things right? But this is just my thinking. nBreanna
What I really wanted to say is that your daughter will beable to have perfectly fine children if she follows her diet while she’s pregnant. BUT, I know you directed that question to Deb and she has done it before so I’ll leave her to fill you in on more details. I’m just telling you what my Medical geneticist, dietitian and genetic counselor have told me my whole life and what I’ve heard for women with PKU who have had kids. nBreanna
Apparently the medical advice regarding gestation and maternal hyper-phe varies from geneticist to geneticist. The center we work with appears to be quite cautious and somewhat alarmist in nature. My older brother (CPKU) has also asked advice on maternal hyper-phe from his geneticist in New York and the advice was much more alarming than comforting. I’m glad to see your geneticist and dietician are much more optimistic.
Breanna- nYou are so knowledgable and sound so well adjusted. Great job to you and your parents. My son is only 10 weeks old he is on the unflavored phenex formula 2 out of 6 bottles a day. We would probably try the pill if it was made available being is has mikd hyperphe and hasnt started any sort of diet, if he even needs it once he strtas real food. I still get alot of anxiety when i think about it. I try to tell myslef to take one day at a time and who knows what will be when he does start eating solids. He may not even need a restricted diet. Only time will tell and hopefully his PHE levelds will remain WNL.