Hi everyone, I am new to this website and seeking helpful information. My husband has PKU and has been off his diet for about 14 years. He eats just like someone without PKU. We have a son who does not have PKU. I need help getting my husband back on his diet. I have noticed and increase in his twitching in his sleep, lots of headaches, very tired all the time and some short term memory loss. I cant sit back and watch him do this to himself anymore. The doctors at his clinic that he grew up with have long retired and he cant seem to warm up to any of the new ones. They are fresh out of college and dont have much knowledge of PKU and his situation. He has a higher tolerance to protein than others and can eat a little more protein. The formula has change so much that he just is too stubborn to get used to anything else. It is like pulling teeth to get him to take time out of work to even get his levels checked. If anyone has any ehlpful information I would greatly appreciate it. Thank you
I’m really sorry to hear your husband is having trouble, but it’s great that you want to help him! I’m not really sure how to help but there is also a website that has alot of adults there, most of them are around their 20’s or 30’s and some have been off diet and are in the process of going back on. I’ve talked with them and they’re all doing great and I’m sure they’d love to talk to you or your husband, the website is http://www.pkuboard.info if you want to check it out. nBreanna
I introduced my husband to this website and he was very glad to see a website deicated to PKU. I made an appointment at his clinic to get his blood levels checked and he is ready to get back on diet. Is there anyone on here that has heard anything about the PreKunil Tablets or the juice boxes?
I’ve heard only alittle about the pills. If your refering to the PKUexpress coolers (they come in little juice pouches) I take those and they’re really good, although they do leave a tiny vitamin after taste. Or if you mean the XPhe Maxamum juice boxes by SHS I drink those aswell and really like them, you just shake and drink! nBreanna
I know what you mean about the Vitamin After-Taste. I want to be able to drink those Juice Boxes so badly because they are so convenient, however, I can’t get past that taste. Any thoughts? I have some sitting in my fridge that I’m trying to formulate a plan on getting into my stomach.
Amy – I believe I know and understand what your husband may be feeling. Getting back on diet is not easy and honestly for me its a constant battle as I face expectations to be “Normal” by those I work with. Given my hectic schedule, I always need to be 2-3 steps ahead of what may happen that would prevent me from staying on-diet which really means getting the right food into me and drinking my formula as needed.
It can be tough. I’m here if you want my thoughts.
David Harris nAdult Living w/ Classical PKU
David- nFor me, I just kept drinking the formula over and over again to get used to the taste. In the past if I didn’t like a formula the first time I tried it I would have given up and refused to drink it. But back in Septemeber I got a new dietitian and long story made short, since I was litertally a baby until last September I had a dietitian who basically made me miserable and made me hate PKU. But like I was saying, when I got a new dietitian I really wanted to impress her so I decided I would try to get used to the taste and so after about 2 weeks of drinking the coolers I started to actualy like them…but sometimes I still have to either eat or drink something else after I drink my formula to get rid of the after taste. With the XPhe Maxamum I liked those from the first time I tried them.
But if you really don’t like it maybe you could try the XPhe juice boxes or see what your other choices are. By the way I saw in your last post that your last level was 7.6 congrats! That is alot better then it could be! nBreanna
I can relate to your husband.
It sounds like he may be borderline pku? nThat is what i am.
I am able to tollerate some protien,but no meat. nTry to convince him to cut out meat, and he will notice a difference in headaches,grumpiness and twiches.
I use to have all of those, and believe me it gets worse. nGet him to start on somekind of formula. nBreaMarie is very knowledgable on alot of different kinds of juicey varities. nAs for myself i have not started on formula yet due to insurance.1 more month. nBut i can tell you just cutting out all meat varities he will noticce a difference.
I use to have bad PKU siezures.I would be so embarrassed. nAll i have done is cut out bacon,meat (all kinds)chicken,fish,beans,peas and nuts.
Now remember i am borderline PKU so my body can
breakdown protiens so i can eat regular potatoes and rice.(just not brown rice),and i can eat real cheese. So if he is borderline it is not as difficult as it sounds.
I’m here if you ever want to talk. nTake care, nTracie
While I am also a bit new to this site, my husband is not. He has classical PKU and suffered through periods of not following is diet. Greatfully, he is back on track. We just returned from the Fall PKU Summit. The folks from Biomarin gave us a lot of information about what being off-diet or even not monitoring the diet can do.
I have a blog that is for the loved ones of PKU adults and Biomarin stated their suppoot for it during the Summit. It is just getting off the ground but it could help you and your husband as you see him through this time. http://www.ryanspkufoundation.org/HollysBlog.aspx
Amy – While I haven’t been off diet for that long, I have had to “jump back on the wagon”. I am also married and I must say that the unwaivering support of my wife – regardless of what I wanted to eat or not – has been a great big factor. Along with the standard steps of starting to monitor food intake, planning food the day prior, even making a monthly chart of planned meals, I say the most important part is the active spousal support. Without my wife being the angel on my shoulder reminding me to “get up and make your shake” or “is that going to put you over your daily intake?”, I couldn’t have established the routine that I currently have. I know that you will do your best and support him, I just wanted you to know how essential (and appreciated!) this support is. Best of luck and feel free to email me anytime with ?’s or updates.
As others above have said, it's great to see you support your husband. My wife is new to the PKU side of me because I left the diet at 19 and am 26 and looking at returning to it and she's been buying PKU cookbooks and allsorts. It's really sweet of her to delve into that side of things, I feel bad that we won't get to eat the same meals together so much anymore. My biggest problem getting back on the diet has been finding medical support. I'm originally from England where I had a great team of specialists and dieticians that helped me a lot. But now I'm in a small town in Kansas, I've found it difficult to find a specialist or someone (whose heard of PKU) who can monitor the diet and get me back on track