Community Discussion Forum New to Another newbie here Reply To: Another newbie here

Avatar of carrie


First of all- take a deep breath- it will be ok. I spent the first 3 months of my pku child's life reading online every stitch i could find and there is a LOT of information out there. Some of it was awesome and some was depressing. When i felt that there wasn;t anything else I needed to learn I turned to my child to see that they were growing up just fine. 

My pku child will be 2 next month, they are sleeping in their own bed (out of their crib) are totally day/night potty trained, have an amazing vocabulary and can already count to 10 (not perfectly but pretty close!). We had asked to have special education training where we had a therapist come and play with her when she was small and teach us educational games (the fact we had two other children didn't seem to matter- we felt like newbies again!) and they kicked us out of the early intervention programs because she was so advanced. In fact in a recent evaluation she is rated at 3 months above her actual age. 

When she was itty bitty she didn't like anyone- she wouldn't be passed around in church and no one  could even hold her. I assumed that was because she had PKU (as i'd read about social anxieties) and so i encouraged social activities but didn't push them. Just last week she pushed her way around a random janitor (whom i was a bit frightened of) to help him vaccume the hallways.

She is charming and funny and a real joy. 

However- pku is a pain in the butt. Although it is hard when they are a baby (especially for mom whose hormones are still in overdrive) it is not impossible and it does get easier- or you get better at it anyways. I wanted to continue to nurse- at first i had to pump and we had to figure out how much milk she could have and then we timed our nursing sessions and weighed her before and after to figure out how much she had gotten. It was a lot of work but that is one area i'm passionate about and thankfully had a supportive clinic. Which is probably one of the best things about pku- you have professionals watching over your child's diet- if they get sick or refuse to eat – you're not feeling alone in trying to figure it out!  And the pku community is awesome. 

Are you on the listserv yet? It is overwhelming at first but a collection of 1500 pku people around the world. 

How expensive is it- well that depends on where you are. I'm in alberta canada so my child gets formula paid for -for life- and gets a selection of baking ingredients (including pku hamburger and pku hotdog mixes), pasta, cereals, bread products and a small selection of cookies – free for life. Everything else is very very expensive . We order some treats , some meat look alikes, and when in germany we order german pku bread which is better than regular bread! 

All in all it has its' ups and down. I read an article about how pku ers are better spouces- they learn things like self control at an early age. 

Our clinic asked us to put her on a Kuvan trial for 7 years. We debated it- and in the end decided to stick with diet. I know some people have had great success with Kuvan but i'm waiting until she is older to see. That is a drug that can increase their phe allowance and apparently helps with some brain development although in my country they are still just doing trials right now. Good luck. 

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