hi i am the mother of a 6 year old boy who is in grade 2. at the moment master 6 seams to be having a really hard time doing the work. it is now that bad that he dosnt want to go to school he tries everything he can to get out of going. any suggestions please
Maybe check into seeing if there is anything in particular that is making him not want to go? Because I know in 4th grade sometimes I wouldn’t want to go, but the only reason was because I sat next to a kid I didn’t like (I was alittle stubborn back then ). I’ts just a thought. nBreanna
i have asked master 6 why he dosnt want to go to school but his reasons change all the time. tlike the works to hard which i must admit he seems to have problems with it, im different and the others kids tease me the teacher always yells at me because i take to long doing my work, i dont have any friends and the list could go on all night. ive tried talking to the teacher and he thinks master 6 is just a very sensitive
p.s it is so good to be able to communicate with some one who is actually living with pku, as i do not have pku myself. i am trying to be as supportive and understanding as i possibly can but i know i will never be able to fully understand what my son has to live with every day.
About the him being sensitive, that might be possible. I know that Erica (My 8-year-old sister who also has PKU) has always been a very emotional little girl. Just out of curiosty, how have his levels been lately? I know that sometimes when blood levels aren’t where they need to be that kids can have alittle harder time learning. I know that I had this problem alittle in 4th grade, everyone could read chapter books and I couldn’t at all…but that might have also had to do with I just never liked reading.
Does your clinic that your son go to hold get togethers like picnics, partys conferences ect? I know when I was little sometimes I didn’t like being alittle different then my siblings and it helped to go to these things and be able to eat all my low protein foods without worrying and see other children like me. In fact to this day being different doesn’t bug me anymore and now I’m trying to help my sister understand it’s okay to be different.
I just wanted to mention, I think that parents of PKU’ers are all extrememly strong! I’ve lived with PKU all my life so it isn’t any change for me, but all of you parents have to adjust your lives a great deal when you have a PKU child…just wanted to tell you all that your kids could never do it without you! I know I couldn’t! Keep up the good work and just above all support your kids and let them know it’s perfectly okay to be different! nBreanna
master six has had really good levels for a couple of months now but it hasnt always been like that, i went back to work full time for a year when master 6 was 4years old plus i had his younger brother to look after as well (who dosnt have pku). so finding time to prepare things and count everything that master 6 was eating became very difficult. during the year i was working master 6 had levels of around 700 and they were ment to be under 480 so im not sure yet how that has effected him. its great to know that some other children with pku are sensitive as well, its also great to know that there are kids out there with pku that are ok and doing well its very reassuring. thankyou for your advise about letting him know its ok to be different we have always tried doing this, so he dose know but he still dosnt like it, hopefully one day soon he will except it.
I guess it would really depend on how long his levels were that high, I know that I have had some levels that were higher but because it was only for a short time and I got it under control it wasn’t a problem. I think one thing that really helped me was when my sister was born, I of course was extremely excited to not be the only one with PKU (my mom wasn’t okay with it at first but she knew I was okay so she knew that my sister would be too).
Maybe next time he has a PKU appointment talk to your dietitian or doctor about some of these concerns about how his levels could have effected him. I’m sure it’s nothing to serious but just know that there is no such thing as a silly question when it comes to PKU. I hope everything works out for you! nBreanna
Hi Breanna, nZachs levels were high for a while on and off but not really for that long. his doctor says that it wouldnt have effected him that much and suggested that something else might be causing problems.
i was talking to Zach about this web site and he wanted to come on with me. i helped him to read some of the letters that you and other people with pku had posted, he seemed a bit shocked that everyone else has problems with pku as well he now asks to come onto this web site all the time.
he is now going to school again without crying and also seems to be picking alot more up in class as well. (his teachers are amazed and so am i) his concentration is amazing and so is his memory. he now says he was crying and doing bad at school because he hated being different. and even though i always tried to explain that it is ok to be different it didnt seem to sink in until we came onto this site .
i was really starting to think there was something wrong with him. but he is now doing great thanks to you and everyone else on this site Thankyou
That is wonderful that Zach is doing good now! Sometimes it helps just to know your not the only one having trouble now and then. Anytime you want I can leave a message for Zach that he can read just for him it you want.
I have a sister who is 8 and has PKU, and I’m sure if I got her onto the computer I could help her type a few lines to him aswell. By the way, there is a PKU game online for littler kids, mys ister played it and absolutely loved it! She even got my two other sisters (Dani 10, Faith 6 Non-PKU) to play and they liked it too. I think I posted the site somewhere in the Parent Support section.
My mom, doctors, dietitian, genetic counselor and teachers all have noticed a great change in me aswell. Back in September my levels were all around 10-12mg/dl (and they’re supposed to be 2-6mg/dl) and now my last 3 levels were, 2.4mg/dl, 4mg/dl and 2.2mg/dl! At my last appointment my doctor, dietitian and genetic counselor said I seemed alot happy then I did back in September. nBreanna
sorry it took so long to reply but i think it would be great if you or your sister left little messages for Zach, by the way Zach’s last 2 levels have come back extremely low (55 then 16) and they are meant to be between 120 and 380 it has been that long since his levels have been to low that i cant even remmeber what happens. do you know?
No that’s okay, everybody has busy lives sometimes. Did you figure out why they were that low?
Anyway, when levels are too low the body doesn’t have enough Phenylalanine which also means that when Zach’s Phe levels are low he also probably isn’t getting enough protein either. So basically from what I know his body would start to eat away at the protein in his muscles which would make him tired or weaker and he could possible get a headache. His body can only process alittle bit of Phe and the little bit that it can proccess it really needs because if he doesn’t get that little amount then his body will begin to break down his muscles looking for Phe.
I hope this helps and I hope you guys can bring his levels up alittle bit. I’ll talk with my little sister and see if she wants to type alittle (which I’m sure she will), but she’s getting ready for bed so I’ll have to do it tomorrow. nBreanna
Zach’s having a really bad day with being pku he is crying and just really upset so i am helping him write a letter word for word
my life sucks i wish doctor jim said i was high in protein, i am 6 and i hate maximaide
Keisha, I’m sorry to hear that Zach has been having a bad day I hope things do get better for you and I guess the best advice I’ll beable to give you is just support Zach. Erica wanted to write alittle bit to Zach so here is what she has to say (word for word):
Hi my name is Erica I’m 8 and I drink Phenex 2. Maybe you could try a new formula. I have a big sister with PKU, I hope things turn good. What’s your favorite food? Mine is low protein noodles. nErica
nLet Zach know that I hope his levels go up too! And hang in there, things will get better and remember Zach your formula keeps you very healthy! nBreanna
Hi Breanna and Erica
we dont have low protein noodles in australia you girls seem really lucky to live in a contry where there is so much variety it would make it so much easier to stick to your diet.
which company do you get the noodles from? do you knoe if they taste anything like normal noodles?
hi Erica i like low protein bread rolls with advacado on them. mum has also been making me vegan sausages and i really like them to. i had a good day today.but i am a bit sick and i vomited up my maximaide. i tried pku cooler 10 but it wasnt very nice. and mum gave me pku gel and it was yuk. you must be lucky to have a sister who is low in protein i have a sister but she is high in protein.
Hi, I just wanted to let you know what worked for me in 4th grade. My nutritionist came into my school and gave a demonstration about pku, and she brought dixie cups and mixed formula for everyone to try and snacks that are ok for someone with PKU. I think that the kids in class are curious and don’t really understand why someone with PKU can’t eat “normal” foods. The kids in my class were very accepting after the presentation and sometimes I had to explain that “yes, I can eat that! Best Wishes