I hope this is the right forum for this question. If not, I’m truly sorry. Feel free to move me to where I belong.
My pediatrician just called. He has some concerns about my three-month-old’s PKU test, but he didn’t say what. I know that this tests for a number of things: PKU, Galaticemia, and hyperthyroid and a couple of others. Being half scandinavian, I know the kid’s in the high risk group for PKU. So my question is this, what kind of life changes are we looking at? I know that for now he’ll have to have special formula that doesn’t have phenolalinene, but what about when he starts to eat food? How hard is it going to be to feed him?
Here is a single page article giving the bare bones of the medical facts.
Like all metabolic diseases the effects are highly variable, and in this case almost entirely avoidable, or at least mitigatable. By following the dietary guidelines closely most of the effects on growth and development can be entirely prevented.
Three months seems a bit long for the results to be coming back for PKU, though. Was there some delay in the postnatal report? It is unfortunately frequent that the test is given to infants before they have had any exposure to milk, such as breast fed babies during the first day or two of nursing. Lawyers rather than doctors wrote the laws in many jurisdictions and the mandatory test must be given on the day of birth, rather than later, when it would be effective.
I am not familiar with the cost of Phenylalanine free formulas, I am afraid. The dietary needs after solid foods are taken are more complex than expensive.
I shall put your son in my prayers, although I am certain he can live a fine, and normal, or perhaps even exceptional life, given that this potential source of harm has been identified and can be overcome.
Tris
“Being deeply loved by someone gives you strength; loving someone deeply gives you courage.” ~ Lao-Tzu ~
We were supposed to get the results back at his two month visit. However, I was unable to afford the visit then and just got his two months shots at the health department as they’ll do them for free. I guess that the doctor was just waiting for us to come in.
Thank you for the link and the prayer.