am i the only one that is concerned about this? i find myself forgetting the smallest things, and my wife is not very happy about that at all. or when someone is talking to me, i go out of the room and come back in, asking what were we talking about!!!!!!
I have never really had this happen, but in the past I did notice that I had a hard time concentrating and keeping a conversation. What I mean by this is in the past when I would talk to my friends I would zone out in the middle of the conversation and then have to ask what they said because I wasn’t paying attention. But I haven’t had this problem in awhile.
Are you off diet? Because I know that one issue with being off diet or having not so good levels is memory loss.
I noticed you said you have 3 children, 2 with PKU. I was just curious how old they are? nBreanna n15 w/CPKU
yes iam off my diet, but will be starting back on monday after i see my doc. my children are 14 and 17. my wife is not very happy with me right now because of the attention problem or lack there of. but for her i would do anything even drink that formula, if it means being with her for the rest of my life. i do not want to have to change my depends in our old age because i have alzheihmers.i love her to much!!! she is my heart!!!
does anyone know all the side effects of not being on your diet or checking your levels? becuase i have been off my diet for a long time.and my side effects are weighing down.
HELLO MY NAME IS BETHANN I HAVE PKU AND SO DO MY BROTHERS I ALSO HAVE A SON WHO DOSE’T HAVE PKU
I WAS OFF DIET FOR 23 YEARS AND IT WAS A BAD TIME IN MY LIFE
IAM UNDER THE CARE OF DR.R KOCH nAND NOW THAT IAM ON DIET I FEEL BETTER. nYES I DID HAVE WHAT YOU HAVE GO BACK ON DIET nAND STAY ON IT FOR LIFE IT’S NOT BAD AT ALL
I ALSO HAVE DIABETES IT’S HARD BUT YOU CAN DO IT nWHOS YOUR DR.???DOSE HE/SHE KNOW ABOUT PKU??? IF NOT TELL nTHEM ABOUT IT JUST REMMBER YOU KNOW YOUR OWN BODY AND WHAT nYOU CAN TAKE AND WHAT YOU CAN’T TAKE
hi all…just realized what’s been wrong with me all my life..at age 56…attention..mood..hearing loss…visual…lack of fluidity in movement…memmory…all the symptoms of ms…lyme’s disease…diabetes like pains and burning without any sign of any of these…aspartame(nutrasweet) intolerance..on..and on and…to everyone else that’s been diagnosed…stay on your diet!!!! been taking mobic…lyrica for pain and neuropathy…aricept and namenda for memory recently…in the past for years effexor for depression and bextra(until they took it off the market) for pain…iin the past week i came upon by accident aa web page titled Nutrasweet detox…and then PKU! ouch! i limited my meat fish eggs milk products and protein in general and the pain and burning is almost non-existant…memory is still a see-saw..so still taking meds for that.
my story is my mother was told never to breast feed me back in 1951…my dad told me i stomped my feet so hard when i was young that it brought tears to his eyes…so on and so forth the story goes on, in my 30’s and 40’s…my parents relayed info to me but they were never told what my situation was…though doctors recognized something was going on with pku back then. as a child…snow white hair…pale green eyes…pale complexion..etc…though i don’t appear this way today. bad allergies…now in one week so much has cleared up by limiting protein on my own..i now have an appointment to get properly tested and treatment to begin. [/COLOR][/SIZE][/FONT]
I’m not positive of all the side effects of poor blood levels or being off diet but here are some that I know of:
lack of balance
lack of energy/tiredness
tremors or shakes
short attention span
I know there are alot of other symptoms but I can’t think of them right now. Also good luck with going back on your diet chargers! You can do it! And also there are ALOT of new formulas that they came out with, some come already made in juice boxes so I’m sure you will beable to find one that you like. GOOD LUCK!
I hate to say it – but you can add Panic Attacks which is a sign of an effect of PKU on the Mental Side of things…
Honestly – the side-effects are scary due to the lack of control I have. The side-effects and the unknown long-term cognitive damage are my biggest motivator for staying on diet.
The side effects were my way of life while off-diet.
David Harris nAdult Living w/ Classical PKU
Yikes! Panic attacks aren’t fun. I’ve never had them but my older sister who is 19 (she doesn’t have PKU) started getting them about 3 weeks before she started college…she was really stressing about college. Anyway, I remember atleast 2 nights she litertally woke me up in the middle of the night because she was crying and freaking out and needed me to calm her down. nBreanna
I can totally relate.
I find it very hard to focus on what people are saying to me.
I can be as bad as not remembering what i had for dinner 2 or 3 days ago. nMy husband gets so frustrated. nHe thinks i can control it,but honestly i will try, and i end up in the shower crying, and feeling alone. nSo i fake it alot!!!!
I am back on diet ,but i think when you’ve been off for so long the damage is already done.
I went off diet very young per my Drs. req. thinking it would be okay. NOT!LOL
My brain fully developed,but the problem is was all the poisions i put in my body daily obviously did not do any good.
I am always on to talk so feel free to vent or what ever K.
Take Care, nTracie-pku
Hi every one this is cat cocoa.I just wanted to say that I been on diet for a year and half and I still get sick every now and then.I also get very moody also. I don’t have engry to exersize like going for a walk today I had a very bad day very moody . Whet can I do to make living with pku beter. Thanks for listing please let me know how you feel.thank you. nCatcocoa.
Hi, I’m Jaycee and this is my first post on this site. I looked at this site once before, but was turned off by by the convoluted registration process! LIghten up!
I am returning to diet/ supplement yet again , I keep ‘falling of the wagon’ nAnother side effect for your list is agoraphobia. I get to the point that I can’t leave the house, I cross the road rather than have to talk to someone. Also anxiety, which of course is related to depression, and panic attacks. Also phobias. I can’t always remember what i was doing 3 days ago let alone what I had for dinner! Diet & supplement helps these symptoms, so we can’t give up!
I can agree with the side effects of being off diet as well as being on. nEven though i’m on diet i still suffer with major depression,mood swings,and aniexty that you would not believe.
I actually had a aniexty attack today,and i seriously thought my heart was going to jump out of my chest.I try to control it by telling husband its happening then breathing my way through it.Sometimes it works fast,and like today i thought it wasn’t going to end.
Hang in there i’m hoping it gets better since i just started Kuvan 4 days ago. nKeep your fingers crossed for me.
What do you guys do when something like that happens?
Talk to Ya’ll later, nTracie-PKU
Hi Tracie, My name is Lisa. I finally found it! A website where I can actually ask the questions I have and not just have a site telling me what PKU is! I have a childhood friend who has lived with PKU her entire life. She is married and just had her first child who is three months old and does not have PKU. She is breast-feeding which she desperately wants to continue, but the baby cries all the time. Her mother thinks it’s colic. Although it could be colic, I am wondering if the baby is in need of more protein or vitamins that a mother with PKU can’t provide through breast milk. At this time she is also in the process of finding a new obstetrician, one that will listen and not just give her pat answers. My view on her breast-feeding is that she should continue to do it, but also give the baby formula that is able to give the baby the extra enzymes and proteins it needs once or twice a day. I am very supportive of her and would like to help her very much. Is there any advice you can give me? She is very sensitive about this issue. I know whatever advice I give will have to be given so gently and carefully worded. If you can I would appreciate your help so much. My heart cries out for her situation. Thank you for being here. Lisa [/COLOR]