sending well wishes

praying

THAT IS SCARY

Yes its scary I am praying that her baby does not have it because if she does have it she will have all kinds of problems for the rest of her life She keeps losing weight which is not a good thing

Tabby,
Your friends baby is in my prayers. PKU is controllable, it's just getting used to the special diets you're on with PKU. Hopefully, they'll get her feedings right and she'll begin to gain weight.

Sandy

Tabby,

I will pray for the baby sweetheart!! I have faith that they will find the problem and treat the sweet little one so they can quickly start getting better...hugs

Here is some actual information for you:
All states in the US require a PKU screening test for all newborns as part of the newborn screening panel. The test is generally done by taking a few drops of blood from the baby before the baby leaves the hospital.

The outcome is expected to be very good if the diet is closely followed, starting shortly after the child's birth.

If the initial screening test is positive, further blood and urine tests are required to confirm the diagnosis.

PKU is a treatable disease.
Treatment involves a diet that is extremely low in phenylalanine, particularly when the child is growing. The diet must be strictly followed. This requires close supervision by a registered dietitian or doctor, and cooperation of the parent and child. Those who continue the diet into adulthood have better physical and mental health. Diet for life has become the standard recommended by most experts. This is especially important before conception and throughout pregnancy.

Phenylalanine occurs in significant amounts in milk, eggs, and other common foods. The artificial sweetener NutraSweet (aspartame) also contains phenylalanine. Any products containing aspartame should be avoided.

A special infant formula called Lofenalac is made for infants with PKU. It can be used throughout life as a protein source that is extremely low in phenylalanine and balanced for the remaining essential amino acids.

Taking supplements such as fish oil to replace the long chain fatty acids missing from a standard phenylalanine-free diet may help improve neurologic development, including fine motor coordination. Other specific supplements, such as iron or carnitine, may be needed.

I myself have a very serious disease that can cause death unless I follow a very strict diet.
This is very treatable. Millions of people have dietary restrictions and live perfectly fine lives. THere is no reason to automatically assume that this child will have problems all her life.

Thanks sunnybunn for the information I will keep praying for her she's a strong little girl and so is my friend they will be okay.

Tabby your friends baby is in my prayers. Angela

Wanted to just say in conjunction with Sunny: One of my college roommates had PKU and though she had to keep a close eye on her diet, she didn't suffer any major effects from it. So it's just a matter of staying vigalent, definitely not a death sentence.

But I do hope everything turns out well and she doesn't actually have it.

Prayers for your friend, her baby and family. Everyone will need to be supportive.

Please keep us updated. My son was a 10 pound baby and lost 3 pounds, it was very scary. The first 10 years were the hardest emotionally. Now he is a rock at 20 years old. (He has learned how to live within his medical challenges)

Have faith in God and the daily breakthroughs in modern medicine. If this child has PKU, Sunny is right. They know how to treat it. Her mom will need your love and support.

Hugs-RJ

Thanks. Last night My friend posted on her Facebook That she can't stop crying I told her that its going to be okay that Amya needs her to be strong. She wrote me back and said tabby Im scared I told her that we are praying for her little girl she wanted me to tell you all that she appreciates all of the prayers and love.