My daughter was diagnosed with non classic PKU. Her levels at birth were 8.3. Since then, with a modified restricted diet of 3 bottles a day of periflex (and the rest BFing), her levels have been low (in the 1s and 2s).
Around 8 weeks old, she was sleeping on her own at night for 10 1/2 hours. Her metabolic doctors suggested this was too long and had us start waking her for feedings (that perhaps fasting too long would cause her phe levels to spike). Since then, her sleep has become progressively worse. She wakes about every 1-2 hours. There have been many things going on that have potentially played into this: reaching the rolling over milestone, having a cold, cutting 2 teeth, and visiting grandma in Santa Fe (2 hour time difference). All that being said, I am ready to get some sleep at night and think it's important for my daughter as well. Her doctors have given me the okay to let her sleep for 7 hours uninterrupted. The problem now is is it possible to sleep train a baby while also waking her for 1-2 feedings a night? I'm afraid this is confusing for her. Does aynone have advice? Have your child's doctors made the same recommendations for sleep? I've read the SleepEasy Solution and ready to try it out, but want to make sure I'm doing what's best for my daughter.
Any and all comments very much apprecited! Thank you!
I don't know if I can be much of a help, but I ll share my experience, quite different though. My baby is classical PKU, with the diet the levels have always been 1-2 when she was that young as yours. We had the same problem ( if another parent, non PKU listens to this, will laugh!). She was sleeping at 8 pm and wake up at 7, non stop. What I did was to give her a bottle, without waking her at around 11. I put her on a pillow and by instict, she starts to drink, asleep. I do this even now ( she is 3) when she hasn't drunk all her formula during the day. I know that its bad parenting, but let all those specialists give our children what they really have to eat, without breaking any rules. I ve met other PKUparents that feed their children in their sleep….as for the levels, I always take the blood in the morning, after the fasting. They were always low at that period, so it was an indication that no other feeding during the night was needed. I hope this helps.
Thank you so much for your reply. I'm going to plan to do a modified sleep training, but still keep two dream feeds. I've been taught how to do the heel prick at home, but my husband and I have only done it once. I'll plan to eventually drop one of the dream feeds and take her blood to test to make sure her levels are okay.
I m sure the levels will be fine… I don t think all PKU moms feed their child every 3-4 hours during sleep. However check with you doctor first. I think it will be allright. Since the morning is the time with the highest level of phe, I think you ll know what is going and be sure that everything is fine after 1-2 normal levels.