Are there any other hyperphe parents out there that can provide some insight or are just starting to figure things out? I posted to a hyperphe group but I am not sure how often people use that one? I have a 3mnth old son Lane that has been diagnosed hyperphe & alot of questions. I have read the same info over and over and still feel uninformed about hyperphe. Our doctors tell us he will likely not need a diet, however after reading posts on this site I'm not sure if I should count on that. Now I am scared all over again. Anyone out there in a similar situation or that has been through this? HELP
Hi there mama813,
I don't know much about Hyperphe as I have Classic PKU, however I would like to say that even if your boy does end up with a diet it is unlikely to be anywhere near as restrictive as the Classic PKU diet so please don't panic.
The other thing is if he ends up on diet it is for the good of his health, it can be a scary prospect but many, many parents have to go through putting their child on a diet, whether it be for Celiax, Allergies, Lactose Intolerance or diabetes, I remember my mother saying once that she has talked to parents of children with other disabilities and they wish that the severity of their childs disability could be reduced or even stopped with something as simple as a diet. Basically we are very lucky for our diets and it is not as bad as it seems.
If you do have to limit your childs protien your medical team will work with you and help you through it, but for now relax and accept that the doctors believe that he may not need a diet, take the rest as it comes, it doesn't help worrying what might be, cos it may not happen, but if it does I believe that you will have the strength and determination to do what is right, what mother wouldn't want to do the best for her child?
If you have any other worries I would be glad to help, I can only imagine how scary this is for you, but take it from someone with PKU, it truthfully isn't that bad, and we are fortunate to have websites like this where we can request help or hear about others experience.
Thanks I know you are right. And we will do whatever is needed to keep him happy, healthy and safe.
Jacob started HyperPhe, and we were told he wouldnt need diet. I was so worried, this would change, that I was very cautious when starting him on foods, and stayed away from any with meat, or higher protein contents. He ended up needing diet. He is now 19 months old. He is allowed 9 grams of protein, in addition to his shakes. Its completely doable. Im not going to say, that its easy, cause some days are harder than others. With a lil prep time, and advanced thinking, and its all very managable! I dont check here as often as I should however, feel free to inbox me and I will give you my email addy if you would rather. Wonder where are you from? We are Ontario, Canada.
Mama813 – I know you posted your question a few months ago…but I just wanted to say Hi and that I am a new Mommy….Abby was born Dec 1/11 and she has HyperPhe. Her levels have been pretty good thus far and as long as they stay where they are then no special diet will be required. However, if they go over 360 then she will need to be on a modified diet. I am not too concerned about it right now since I am breastfeeding. I think the true test will come when we start solids. That is what I am most afraid of, is how do I start solids. We have a dietitian so I am sure she will help us cross that bridge when we get there.
As for now, we have to get her blood tested every month to make sure her PHE levels stay low. I am so happy I came across this website. It is nice to know we are not the only ones going through this. It has been an emotional rollar coster the last couple months.
Jakesmom (I am also in Ontario)