My daughter is 5 and 1/2 months old. The doctor says she has the low benign case right now. Two months ago her level was 3.1 then it went up to 4.8 I was devistated, now it is back down to 3.8. Is this normal? They also said that by 10 to 12 mths is when it will mostly go up if it is going to. I am so confused.
The Phe levels are suppose to be between 2-6 mg/dl. So right now your daughters levels are right where a person with PKU should keep them, which means she might have hyperphe (a very mild case of PKU), then again who knows. Just like with somebody who has diabetes, their blood sugar changes with everything they eat and with PKU the phe levels change constantly. For example if I take a blood test and I haven’t eaten in hours, my level might be lower then it would be if I had just stuffed my face with a whole bunch of chicken (which of course, I have PKU so I won’t be eating chicken). I doubt her levels will ever be the same number constantly, the goal is to just keep it as constant as possible.
I hope this sort of answers your question. If her level continues to go up she may need to be more restricted in the phe she’s allowed which may mean less regular baby formula/baby food and more PKU formula. Feel free to ask if you have any other questions! I’ll help when I can! nBreanna 17 CPKU
The doctors have me thinking that it could stay in the low range forever and that she may never have to be on a restricted diet. Do you think this is very likely? I am just sick of them telling me things they think i want to hear. As upset as i was in the begining now i just want to be prepared so i can help her.
I am also curious how much the formula and food is,if you don’t mind me asking.
As babies grow their tolerance for phe does go up, but so does their appeitite. I honestly couldn’t tell you if she would ever need a restricted diet or not. I’m assuming that if her level is around 4 right now, she’ll need some sort of a low protein diet. I’m allowed 1030 mg of phe which is a lot more then the 300 mg I was allowed before (I’m on the drug Kuvan) and I still have to watch what I eat because sometimes I do go over.
I’m not sure about formula/foods. In Wisconsin formula and some foods are provided, but I know they are expensive. nBreanna
Thank you for responding. It is nice to hear this from someone who knows so much about it. I am also not sure what the difference is between hyperphe and classic pku. Is it just the amount of phe you might be able to have?
Sorry, yes the difference between hyperphe and classical PKU is how much phe a person can tolerate. People who have hyperphe are usually allowed much more phe then those with classical PKU. I didn’t know the difference between classical PKU and hyperphe until I was 12 and heard somebody mention it online and I asked my doctor which one I am. I’m Classical PKU. nBreanna
My daughter is also Hyperphe. When she was first diagnosed the doctors and dieticians told us that she would not need too many restrictions except for no meat and seafood. I know exactly how you feel-wishy washy doctor responses…We went for our last check up and they told us she was showing more classic PKU tendencies-which was very hard for us to understand. Later they apologized about not explaining it well. We are now waiting to try cheese after her 1st birthday in a week. Tolerance plays a big role in blood levels. If you are feeding her baby food, you will see how she tolorates sweet potatoes and peas (if your dietician reccomends trying those). It sounds like your daughter and mine fall in the same catagory of levels. Don’t be upset when they go up and down-I was the same way. As long as her levels are under 6 she will be fine. She is growing so much now and it will fluctuate for a while. My daughter is usually between 2 and 3.8 now. If you have any questions about foods/table foods for later, let me know. I have been exactly where you are now!
I forgot to tell you about the formula. We have been using phe free formula since she was 10 days old. Our insurance covers 80 percent of the cost. Your doctor will advise you about what type he/she wants to prescribe. The healthcare company mails it to us every month. Her doctor should give you info on ordering from the closest representative.
It is good to hear from someone who has been there. This is a terrible waiting game right now. My daughter is not on the formula and I am concerned that she will not want to drink it the older she gets, but i guess we’ll cross that bridge when it comes.
HI! I am new to this site, but saw your posting and had to respond. My daughter who is now 2 years old, is hyper-phe. The difference is classic PKU babies are missing the enzyme to metabolize phe, where as hyper-phe babies have an enzyme that is deficient. Not working to the percent it should be. My daughter’s numbers have fluctuated somewhat within her 2 years, especially when she’s sick. She is on a low protein diet, but not extreme. She eats 2 pieces of cheese a day, 1 yogurt. Eats lots of fruit and carbs(cereals with rice milk) Can’t have milk, eggs, meat, chicken. She’s 2, but still drinking baby formula mixed with rice milk. She can tolerate it and she needs to get a certain amount of protein, but not too much. It’s a balancing act. We are trying to transition her to drinking the special formula. I hope your working with a nutritionist. I see mine everytime my daughter gets her blood taken (about once a month) Be an advocate for your daughter, ask all the questions you want, clarify your confusion. It is very scary, but take it one day at a time. You do get used to it and you learn more as time goes on. Let me know if you have any other questions, would love to help is I can.
My son, Denver, just turned 11 mos today and he has classic PKU. His levels have changed alot throughout his short little life. When he was first diagnosed it was up to 34 and just recently it went down to .08. The medicated formula brought his level down when it was high but it is a challenge to find the recipe to get it higher. It seems that the more active Denver gets the faster he is burning the phes therefore making it a little stressful. My son has no development issues… He almost walking!!! Just take one day at a time and I promise you will get through it
Thanks for responding. It has been a few months and i feel a lot better about pku now. The more i talk to people who deal with this the more i realize it is totally manageable and she will be happy and healthy. Sorry i haven’t responded sooner i joined cafemom.com moms that deal with pku. you should check it out i really like it. More live chat and you can send private messages to your friends.
My advice is to introduce her to the formula as soon as possible. I have been taking it since I was a few days old and even then, I hated taking it when I was younger. The more accustomed she is to eating regular foods the harder it will be to take them away from her. If she truly does have PKU she will indeed need to go on the diet. There is no way to keep her levels low enough as she grows older than to stick to the diet and take medication. I hope this was helpful. Meaghan – 19 CPKU
I was born with moderate PKU. My levels were pretty low and after 3 years old I was off diet for 35 years. Now I have possible brain damage because over the years my levels rose to 1800 moles/liter. Which is 60 mg/dl on the old scale. It was never that high when I was a teen. Watch the levels for life. Doctor are not sure. My doctor has never seen anyone like me or even heard of anyone like me. I have constant dizziness and problems concentrating including driving a car. NEVER let your guard down.