Skip to main content

A visit to the Dietician

The Lodger is small. He's 22 months old but is still fitting perfectly into his 12 month clothes. When I see him next to other kids his age, he's tiny! 

We meet with the Dietician a few times in the year. 

Yesterday was that day. I'm always nervous before a visit to the Dietician.
Has The Lodger grown? Has he put on enough weight? Has he put on any weight? Too much weight? Are we giving him enough food? Too much food? The right type of food? Is he on the right type of diet? Is he getting everything he needs nutritionally? Are we too strict? Are we doing the right thing?

The Lodger gained in weight and height! We rejoiced! He's still on a low percentile but his Dietician is happy with his growth! Children with PWS often struggle at the start to put on weight and then around 2 years old they can rapidly gain weight. Research has recently shown that the rapid weight gain can start before the insatiable appetite begins. 

It was five months since our last visit. The changes were big. The Lodger wriggled until we put him on the ground to play with the toys in the room. WRIGGLED!! This was such a 'High Five' moment for us as parents. His strength has really increased over the last few months. He's getting stronger all the time. He happily entertained himself as we spoke with the Dietician. 

The Dietician was delighted with his diet. It was such a relief. He's getting everything he needs. The best bit was she described his diet as 'not a special diet', it's just a diet.. and a diet that everyone should be following. 

The Lodger only eats and drinks healthy options. He's never had anything unhealthy, ever! We control exactly what he eats and when. 

I've found myself getting much stricter around food. The Lodger's interest is increasing around food. He'll notice people eating, he'll sometimes get cross when a meal is over and he often gets very happy when it's mealtime! The Dietician was very happy to hear we've made our home PWS friendly!

No means No in our house. We eat breakfast, lunch, dinner and two snacks. There are no exceptions. If you visit us and it's not snack time, there's none offered. We eat in the kitchen. Food is not a treat. 

We hope that these house rules will make our home a safe place for our son.









Comments

Popular posts from this blog

Prader Willi Syndome - The Liam Neeson Effect

Firstly I can't say I am in any way qualified to discuss this subject. There are no letters before or in fact after my name. I went to college but didn't learn anything about stress, anxiety or Prader Willi Syndrome. And I don't get paid large quantities of money to discuss these topics.
But what I do have are a very particular set of skills, skills I have acquired over a 4 year period. Skills that make me a nightmare for people like you.  The last part is factually not correct but if it's good enough for Liam Neeson it's good enough for me.

My skills are a little different and totally self taught through nothing other that necessity. The necessity to deal with the wonderful symptom of anxiety in a 4 year old with Prader Willi Syndrome.  Again I'm only 4 years and 7 months into my journey of involvement with Prader Willi Syndrome so my experiences and thoughts are just mine and not the silver bullet of PWS. If it was, maybe more people would read this blog.
The Lodg…

The Shuffle Monster

Sometimes you enjoy spending time with your child. I'd even go as far as saying most of the time it's enjoyable.
But then there are those other times...
It's 5am. I know because I've checked the phone, undetected, hopefully, as The Silent Shuffle Monster makes his way through the darkness. The Lodger is awake.  I always check the time in trying to understand this next crazy symptom of Prader-Willi Syndrome.  The dreaded early waking.  I not sure on the specific reasons or causes for this. Possibly hunger or a low blood sugar level or possibly anxiety relating to the 'Will they remember to give me breakfast?' A consistent worry in the world of PWS.

Ive captured this moment before, the waking and slow approach, It happens like this. The Lodger wakes, reaches out turns off his sleep apnoea machine and carefully removes his mask. He then slips carefully from the bed making sure not to wake Walter and pulling the covers back up on him. Important not to wake wake Walter. Th…

Prader Willi Syndrome, it's not always fun!

It's been quiet in the world of The Lodger of late and by quiet I mean so freaking busy there's no time to write about the trials and tribulations of Prader-Willi Syndrome. 
I guess it's also easier to write when times are good and when there's time for celebration but I guess if we're to be honest about Prader-Willi Syndrome recently there’s been a few more bad days. 
If it's not another disappointing hospital trip where your answers still can't be answered because let's face it they don't know all the answers, it's another hoop to jump through trying to get The Lodger better services in pre school and trying to plan for primary school next year. 
And then there's The Lodgers ongoing development and attempts to understand the world around him. 
The Lodger is four and the behavioural challenges of PWS are showing through. Possibly due to lack of understanding and still some difficulty  with communication the Lodger is testing his surroundings la…