Tuesday, August 21, 2012

Food be the Enemy.

I'm not even sure what to say about this, so please excuse my rambling. Addison has obviously always had eating issues.... from the beginning of her life, whatever we gave her was never enough. She screamed bloody murder at the end of every feeding, furious with us for taking the bottle away. This started as young as 3 months old. It got worse and worse when we started table foods. They immediately were concerned for Prader-Willi Syndrome, but gene testing came back normal.

My heart is hurting for my girl.

Addison said "eat?" over 3 dozen times yesterday while frantically pointing in the kitchen.... and then when food was not given, she erupted into screaming fits. When she did get her food, it was never enough, she finished it in 2 seconds and immediately signed "more" and then when more didn't come, she threw herself down screaming and crying. She tries to hijack food from the kitchen at least 10-20 times a day. She inappriopriately signs 'eat' for everything else. I'll say, "Addison, want to play ball?" and she will sign back, "YES - EAT!"

Even our 3 and 5 year olds can't eat a fruit snack in front of her without feeling guilty because of the fits she throws. Its ongoing from the moment she wakes up, til bedtime. She thinks of nothing else. Its interfering with her playing or doing any other kid stuff... and most of all, it makes us all feel awful because she wants to eat more sooo badly.

So why not just feed her more? Because its NEVER enough. We learned early on Addison would eat until she throws up. There is never a 'full' feeling. Today I'm going to do an experiment again to prove this to our doctors - obviously she can't have normal foods but I'm going to give her food every time she wants it and as much as she wants today. I will tally up the calories at the end of the day.

At 10 months old, there is one night she ate 7 huge dinner rolls at Lonestar and was still crying when we took them away.

By her first birthday, she was eating 1200+ calories a day, enough to sustain a full grown woman.

Now she's growing like crazy on just 900-1000 calories of elemental foods. As in, gaining a pound every couple of weeks. Weve spent her entire life battling failure to thrive but I believe wholeheartedly that left alone she would eat herself to death in a hurry. I wish it was funny as it is ironic, but I am so worried about her.

Audrina has already begun the crying and screaming when feedings are finished. Its so frustrating because as a mommy I just want to make them happy and let them have whatever they want until they feel full, but they throw up before they ever get to that point.

Too many of our doctors keep saying all tube fed or diet restricted kids act like this, and I know its not true - not to this extent anyway. Yes, there are many kids who can't eat normal things who go through a period of time where they act out because it bothers them, but this started by the time she was 3 months old. I've literally never seen Addison act 'full' a day in her life..... so I guess today we will find out. I'm keeping a video diary of what happens and will share it on the blog soon.

Please be in prayer that God will take their hunger away and allow them to be fulfilled and nourished and happy.


  1. Oh Kim.That is so tough as a parent.I am so sorry that the Drs are not helping you and the girls with this.I really pray that the video diary will help them come to their senses and start helping you all out.

  2. Poor girl! She is the same age as my son and I know how mad he can get when he wants food. I can't imagine not being able to give it to her. I'll pray for you all!

  3. We are praying that God take their hunger away and allow them to be fulfilled and nourished and happy =o)

  4. I am praying for you and your sweet girls. My heart aches for them both! I found your blog on the November 2010 group on babycenter. My youngest daughter is the same age as Addison and I just can't imagine going through all this with her. Good luck to you!

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  6. I thought I would pass along this information. I'm not sure if it is of any help to you. Or when the article was published for that matter. But it does say that the specific type of test used is important in detecting Prader-Willi. I can not imagine being in your shoes. I hope you catch the zebra soon.


  7. Just saw this post. You're right, it does sound like PWS. My niece and goddaughter has PWS and although hers has been monitored and controlled since discovered shortly after birth, it sounds like all the same symptoms you're experiencing. Hope you get answers soon. I'm so sorry the road with your girls is so rough. "For I know the plans I have for you, declares the LORD, plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11