I haven’t noticed any dads on here, 0nly moms and people with pku. My daughter was born 2/28 and was a perfectly normal and healthy child until 6 days we get a call and have to go to childrens hospital in detroit (3.5 hrs away). All I remembered from nursing school was pku caused mental retardation which could be prevented by diet. The last 5 days have been a journey of learning. Reading everything I can at work on the web, pubmed, etc. Other than almost cryinga couple times during the session at childrens, I really havent had time to come to grips with what is happening. Is easier just to do something than deal with it.
Well, out of time for now. Will check back in later.
I have noticed that aswell. Support boards like these are mostly dominated by people with PKU and mothers, but it’s really great to see a dad for once!
I just want to reassure you that your daughter will be just fine. Both me and my 8 year old sister have Classical PKU and we are no different then our 5 other siblings (who don’t have PKU) and our cousins. I’m an A student, well almost, I take dance classes (tap, jazz, ballet, pointe) and volunteer teaching dance classes and in a few weeks I will be tutoring at my younger sisters elementary. I’m not trying to brag but just the get the point across that your daughter will be fine!
My advice is just treat her the same as anyother child while she’s growing up, because in reality she is just like any other child. She’ll just eat alittle different. Also give her alot of support, let her know it’s perfectly okay to be different (because it is!) and think positively about her diet. Because whatever outlook on PKU you have, will mostly likely be the outlook she will have when she is older. So if you think on the positive side about PKU she probably will aswell. After all there are so many other things out in the world that your daughter could have which could leave her mentally retarded without having a diet to prevent that. nBreanna
Thank-you for the reply.
I have a 16 yr old son nonpku with a different mother, and a 2 1/2 yr old son nonpku and a 16 mo daughter nonpku with the same mother. Both full siblings have been retested and should have the results back tomorrow night. The sister however has the classic ‘look’ of pku according to what I’ve been reading; more so than my daughter with pku. It has been helpful to read of older teens and young adults who have managed pku well and all that they have accomplished. It has even, in a way, been helpful to read of pts who went off diet and what has happened because of that. I have come to the realization that with careful monitoring and diet, that she will be well and accomplish much in life.
This is the first time I’ve ever posted to a discussion board or joined a group or anything like that, so don’t know all the ‘rules’ but I hope to make contact with others who can help guide me through the ‘human’ side of things. The things that the doctors and np’s and nurses and dieticians can’t know.
That’s probably a good idea to get your other daughters retested. Although in most cases if the PKU was missed since they’re older you probably would have realized something wasn’t exactly right. When I was born my mother had my brother (who is about 17 months older then me) retested because he was developmentally slow and had the whole blonde hair and blue eyes. Thankfully he didn’t have PKU. Anyway I’ll keep my fingers crossed and hope the results come back good for you.
I just thought I’d mention that I know of a few other support groups similar to this one that you could check out. I’ll just leave you with the websites in case you decide to check them out.
http://www.pkuboard.info (This is mostly adults around their 20’s or 30’s with PKU but they are all very active and I’m sure they’ll be happy to help in anyway possible! They’ve helped me alot!) nBreanna
Hi and welcome! nYour baby and mine are almost exactly a year apart. My son was born 2/15/06. He was just over a week old when we got the call and had to go to the University of Minnesota in Minneapolis (2 hours away). I cried for about two days. Things are good now. nEaston drinks Phenyl-free 1 by Mead-Johnson and likes it. We had to do heel sticks pretty often at first but now it’s about once a month. I think those heel sticks are harder on the parents than the kids. nMy husband and I have done a lot of thinking and talking about PKU. Bottom line is that PKU will not prevent Easton from pursuing anything he wants in life. He will not have a shortened life expectancy. In fact, he’ll probably be more healthy than average due to his diet (veggies and such). Also we have met other families and kids while at the Fairview Children’s Hospital/Clinic and there are definately worse things than PKU.
If we (me, or Brea, or the rest of the members) can be of any help, let us know.
Sarah- nEastons birthday is February 15th? That’s cool because that’s my cousin and two of my sisters birthday too! They’re 19, 17 and 10.
Also, I agree with Sarah. There are alot of things that Me, my sister, Easton, your daughter and all the other Phenylketonurics could have that can be alot worse. nBreanna
Thank-you for your helpful replies. Both full sibs re-tested normal. The heel sticks are hardest on her mom, even though I have done all but one. She usually ‘helps’ with them though. Gabriella is now off daily heel sticks, drew wed and now not again until monday. Blood levels have been in the 4’s since the third draw. So far so good. Other than that, she is a great baby, very cuddly.
Randy- nThat’s really good that they retested normal. Also, that’s awesome that her blood levels are coming back around 4! Good to hear to she’s a cuddly baby aswell .
I was just curious if they have Gabriella on a formula yet? And if yes I was just wondering which one? nBreanna
She is on Phenex 1. Went off all breast milk for 72 hrs, now is allowed 7 oz of breast milk or formula daily, rest is phenex. First couple of days was less breast milk or formula, but is what it is now. So, from 7 days 54 mins old, went on pku formula. Will change as she gets older to phenex 2 then phenex 3 (I think is 3). Plus goes back to dmc children’s at 3 months,6 months, 9months and 1 year where they will help us introduce appropriate solid foods. The older full sib Joshua 2 3/4 is trying to feed her real food already ’cause she’s hungry’, so we’re taking advantage to not only teach him safety of babies can’t eat real food yet, but to begin to teach him about Gabriella food and not-Gabriella food. I think he’ll be very protective of her as they get older. The other nurses at work were almost as excited as I was when her level went to 4, has been very great to have good co-workers and an understanding manager during the past week and 1/2 when I had to come in late because of heel sticks and phone calls, plus my head being elsewhere for a couple of days. Randy
I don’t think there is a Phenex 3, but I’m not sure I could be wrong. I know my little sister (who is 8) is still on Phenex 2. That is really good to hear that everyone at your work is helpful, it probably helps alot. My mom always told me when I was first born she wasn’t able to do my blood on her own so my dad had to (even though he used to hate blood). He always had to figure out when he would do it though because he was just getting out of college when I was born.
He probably will be protective of her, but there’s nothing wrong with that right ? I know from experience, my brother is about 17 months older then me (he turned 17 in Jan) and even now that I’m 15 he’s still very protective of me about both my diet and life in general.
It’s interesting to hear that some kids like the Phenex 1. At the University of Minnesota they don’t even use Phenex because some babies don’t tolerate it well. Easton sure did not. He spit all of it up, even out his nose! We’ve used Phenyl-free since then and he loves it.
I’m glad to hear the baby is doing well. Hopefully it’ll be easy to control her levels.
So far no trouble with feedings. Spits up just a very little bit. It appears that we’re on weekly draws now. yeah!! More results came back today from the visit to children’s on the 7th. She doesn’t have any of the ‘variant’ forms of pku, which is a good thing according to the nurse practitioner. Will have the levels I drew today back tomorrow, should still be good. Is nice to have someplace to talk and be understood. She’s still a wonderful baby! nRandy
I’m sure she’ll be a wonderful child aswell . It’s great to hear that she’s still doing good with both her formula and levels.
Phenex is all my sister will drink, my mom tried to switch her to the XPhe Maxamum and PKUexpress coolers when I switched because they came in juice pouchs and juice boxes so my mom thought it would be easier to take to school. But Erica didn’t like them so she just decided to leave her since she’s happy with what she’s taking. nBreanna
Hi Im a dad of a pku patient also but Im a filipino, we are told that phenyl free milk is not available here only in the US my child is only 21 days old we want to save her and give her the right to a normal life but the problem is the phenyl free milk, we dont have the capacity to order it abroad, we are devastated……
I’m filipino (well only 1/4…my Grandma used to live there) but we live in the US.
I think that is absolutely horrible that your child doesn’t have access to that, never stop trying! Because getting it for them when they’re something like 2 months is better then never getting at all. Just keep trying, talk with your doctor if you can and figure out away! I’m really hoping you can solve things, I’ll be thinking of you! nBreanna