Community Discussion Forum Parent support Does this describe you or your pku child?

Viewing 7 posts - 1 through 7 (of 7 total)
  • Author
  • #9155
    Avatar of carrie

    It is a slide show that is a compilation of research that talks about how pku compares with non pku population. 

    Avatar of Timothy

    Actually, as an individual with PKU, it doesn't describe me.  I have a high IQ and reasonably well academic performance.  Verbal is my strongest category, although in standardized testing I scored in the 95th percentile in math.   I also enjoy sports and… anything health/wellnessy.  Also, I haven't had a day where I was depressed since I was 14/15ish  and that I would just chalk up to those rough early puberty years.  I'm not trying to brag or anything, only point out that a tendency toward certain problems doesn't necessitate or destine a person to end up any particular way.  

    Avatar of Breanna

    I could be wrong, and someone correct me if I am, but I think this power point is focusing more on the issues that people with non compliantPKU have.

    The sixth slide even shows the shocking percent of people with PKU in different age groups that are on diet, but still have higher than ideal phe levels. On the twelfth slide it does say that people with PKU have slightly lower IQ's than their siblings and peers, BUT take a look at the thirteenth slide. Of the children involved in this study from 0-12 years of age some of them had average phe levels up to 750 ummol/L or 12.5 mg/dl. The recommended phe level for PKU patients is 120-360 ummol/L or 2-6 mg/dl. The average phe level of someone who does not have PKU is less than 60 ummol/L or 1.0 mg/dl, so it makes sense that with high phe levels that are over ten times greater than the general population that more problems would be seen.

    You kind of have to take this power point with a grain of salt. It definitely has plenty of great information and kudos to whoever put it together, but sometimes power points, graphs, studies, etc can be misinterpreted without a presenter to talk us through it. For all I know I could even be misreading this power point LOL ;). Regardless of whether or not I’m reading this power point wrong though I do know that most of these issues do not apply to me.

    Avatar of carrie

     Great to hear!

    I also noticed the discrepency in the numbers while looking at the slides- i was very surprised that such a large % of kiddos (even those ages 0-4) were out of range- and it made me feel a bit better about the fact that while teething or something my child also is out of range for a week  or two. 

    It is very hard as mamma to a pku baby to know what the future will hold and how much of an impact pku will have on their life and what i can do now. Today we had her evaluated from an early intervention standpoint and things like gross motor skills and fine motor skills are fine. But then I wonder will there be other emotional issues later- is there any way to prevent these things from happening? Is there therapy we can start? Something we can DO as parents to help give our child the best start possible. 

    Avatar of Jennifer

     I agree with Brea.. a lot of the numbers are showing for off diet PKU people. As a mother to a PKU baby I completely understand where you are coming from. My son is going to be a year old and has ALWAYS been ahead of his milestones… he even started walking at 9 months old. He is very bright and very observant. I think its just important to remember to keep them on diet and watch their levels. I notice when Ian's get higher he does get grumpy… so I keep him on lower phe foods til his levels come back down.

    Avatar of Breanna

    I think the best support a child can get is not from a counselor or a therapist, but from their parents. I honestly believe that I cope so well with my PKU, because of my parents neverending positive attitudes. They raised me to believe that I was no different then any other child, because I wasn't, and that is what I grew up believing. I treat PKU as nothing more than another part of my life, because that is how my parents always viewed PKU. I can tell you from a personal perspective that PKU has never hindered me. In fact it's probably given me more strength, self discipline, and a positive outlook in life.

    Keep doing what you guys are doing. I'm sure your little ones will be just fine. They're in great hands :).

    Avatar of medina

    I also have a 14 month old boy , that he is a head of his coevals . he is more clever . he very soon could crawl and walk.  he has a very intrest to know about everything . and he is very curious to discover every thing .

Viewing 7 posts - 1 through 7 (of 7 total)
Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional