My three year old throws temper
tantrums, whenever we are out and we have to
leave what he his doing,he gets him self so upset nand there is not way to calm him down, I wanted to
know if this is a common for PKU patients.
My son is 2 and a half years old. I was concerned that his temper was caused by his occassional high PHE levels. My doctor said that at this age, tempers are common. He is just like any other child without PKU as far as behavior. I have to say, I was thinking just like you during bad tempers. Is this because of him having PKU… But, in reality everyone goes through this during toddler ages!!!
First of all I think wolskiii is right, that is just the age where little kids have tantrums alot, But also I have noticed that me and my younger sister are more moody then my non-PKU siblings. My sister is very emotional and cries more then my other sisters and I tend to get angry faster then anyone else. I haven’t had to bad of levels in my life so I don’t know if it’s just me and my sister or if all people with PKU are like that but we do seem to be the most emotional of my siblings.
When I was that age, I had temper tantrums like everyone else. But I grew out of it. I am quick to temper and cry more easily when my levels are high though. Just thought I would put my two cents in.
Jodi n32, CPKU
ova scotia, canada
My 3 year old brother has temper tantrums but he is non-PKU so I think it is very normle to have temper tantrums for any chiled.
i had some harsh temeper and anger problems as a teen. i was very out of control. faught with people at school, my parents, priceables, and my sister. it caused lots of problems and hard relashioships. i think it was do to high levels and stess. sometimes it was just drama, but i also had to learn that my habits were stressing my body and my mind. i think they were the best reasons for my temper.. as it is now were near where it was , actually i rarely ever get mad. but i do cry easy and im super senstive!!
hi, my daughter is 3 next week and she has pku but i have to say she’s as good as gold, she’s in nursey a lot of the day but if she does start to play up she gets a choice, she either stops what shes doing or she can choose to either go to bed have her toys taken away etc, she always chooses to be good. She did used to have a tantrum in the supermarket but i left her on the floor and hid round the corner, needless to say she doesn’t do it any more. Is anyone starting to have trouble getting the gels down, cause i want to get her out of nappies during the night but if she doesn’t take them during the day i have no option. Any mums with older kids got any suggestions
I’ve lived with PKU all my life when I was younger I never thought about it as much just went along with it drinking the nasty formula and trying to stay on diet! This past year in high schoo has opened my eyes to the truth of PKU. The truth is every person ever cursed with ths god forsaken disorder lives behind a fence we can only walk so far before we hit the other end of the fence. The same goes with a persons diet their PHE limit per day is the size of the fence if you an have 300mg a day ur yard is fairly big if you can get 1000mg a day you have Fenway Park all to yourself but its how if you stay inside your fence you won’t get hurt step outside of it and your just causing yourself harm. There has never been one time in my life where I have ever enjoyed having PKU I hate the fact that I am a lke a dog on a choke collar I hate the fact that I am a slave to survival by not being able to eat what I want without having to be punished for it. Another thing that really ticks me off is all these stupid technicians creating better meters for diabetics when people with PKU could use something like that imagine being able to do the same monitoring your phe intake a day so u can say on track>This would a tremendous bump in trying to keep people on diet and safe! So as you can tell I hate PKU I always have ad always will!!!!!!
No one’s going to try to make you love having PKU… but it does seem to me that hating something about yourself that is permanent won’t help you very much. All people have SOMEthing wrong with their genes; they might just not know it yet. There are genes that predispose people to Alzheimer’s or breast cancer, and even though not all the genes have been discovered yet, probably most diseases have genes associated with a susceptibility to them.
Everyone’s got problems, even though you might not know about them. People are good at keeping their scar tissue hidden, whether it’s physical or otherwise. I just don’t see the point of hating something about yourself that you can’t change. I don’t imagine feeling that way would make other people very inclined to accecpt your PKU as just a natural part of you. If they see that you reject it, and hate it, then why would they think, “it’s just part of him and I accept it”? They would be more likely to think of it negatively, and that would just make you hate having PKU even more, beccause it might negatively affect your relationships.
Of course, they’re your genes, and it’s your life, so I’m not trying to tell you what to do. I’m just responding to what you said with my thoughts.
I agree with Jabberwocky. The way I think about it is that nobody is perfect and life can never be 100% fair. Also, I know and see people on a daily basis that make me glad that all I have is PKU. Those being people who are mentally handicap and will never beable to live on their own, have children, go to college etc. Truth is we could have been born with other genetic disorders that would not only restrict our food but our social, emotional, and physical growth as well.
Basically all of my friends know about my PKU and atleast know a handful of information about it. Enough that they know some things that I can and cannot eat. I never present my PKU to them as something horrible and because of this I think they have all accepted it and actually find it alittle bit interesting. Plus I just keep in mind that food is food, you cook it, swallow it and then you never have to see it again. And there are still alot of tasty things we can eat.
Do you not like your formula? Maybe you should speak with your dietitian/PKU doctor about finding other formulas to try because there are SOOOOO MANY types of supplements you can take and some aren’t even in the form of formulas.
Just my thoughts on this! nBre
Hello all you mommies, nDon’t worry so much.
I have pku and i am a chilhood educator. nEarly childhood.
It is perfectly normal for your child to have tempertantrums. nThink about it if they cannot communicate with words quite yet they are going to find a way. nMy daughter is notPKU but she had her moments. nRemember terrible 2’s and 3’s.
It just depends on your child.
If you are looking for a little help go online and look up signing for toddlers.
Its easy and your child wont get so frustrated. nPlus remember your child be he or she is now hitting the stage of manipulation. nThink about it. nThey are alot smarter than you give them credit.
If you are concerned that t might be your childs level get them checked, and monitor them when you notice the out bursts.
I hope i was of some help. nTake care all. nTracie