So Amelia's Diary has been going for a year now, and I'm still amazed with how well received it's all been, the support we have received and hopefully given to other families has been a wonderful part of our PKU journey.
Now as today (28th February) is not only the end of another month but its two other things... pancake day! Which hopefully with our posts has been less daunting and more fun for all our PKU families but most importantly it is International Rare Disease Day!
So please tonight join us in the massive campaign and follow these simple steps!
My message is to always shine brighter, smile bigger, aim higher and believe because you are amazing!
1. Write a message of care & support for people with a rare condition.
2. Hug a family member, friend, partner, colleague (or even a stranger!)
3. Take a picture of you hugging and holding the message of support in your hands.
4. Upload your picture on www.hugforrare.com or https://www.facebook.com/hugforrare/ between the 20th-28th February.
#PKUStrong #PKUtogether
Monday, 27 February 2017
Wednesday, 29 June 2016
Sleepy?
Recently my little monkey has struggled with her sleep, fighting it and getting so worked up that it take awhile to get her to nap... Once she sleeps she's a very light sleeper and until fully settled she's very jumpy.
After a bit of a nap she wakes up still seeming tired and not fully with it. At night she then becomes very hard to get to sleep properly until about 1am... Crying and getting really worked up, she never had much energy at all...
This is a very recent thing... Does this sound like your little one? Fear not!
PKU'ers struggle with energy levels due to the small amounts of protein, throw weaning and teething into the mix and you have a very energy deprived little one...
But things won't always be this tricky I noticed something on our prescription letter I had come across so looked it out, found out it's an energy supplier to be introduced into our PKU'ers routine. This will help make a difference as they grow as they will be getting less from the small amounts of protein...
So all I will say is if a sleep pattern changes and your PKU'er acts out of character don't worry this is to be expected... But let's not pin PKU on everything 😂😂 we don't want to excuse any naughty behaviour on PKU... But don't panic if sleeping patterns change, I've been told that this is pretty common in PKU so do not worry
I hope this helps you all in the future when tired and worried that you'll never get those lovely 8 hour sleeps back they will soon enough!
After a bit of a nap she wakes up still seeming tired and not fully with it. At night she then becomes very hard to get to sleep properly until about 1am... Crying and getting really worked up, she never had much energy at all...
This is a very recent thing... Does this sound like your little one? Fear not!
PKU'ers struggle with energy levels due to the small amounts of protein, throw weaning and teething into the mix and you have a very energy deprived little one...
But things won't always be this tricky I noticed something on our prescription letter I had come across so looked it out, found out it's an energy supplier to be introduced into our PKU'ers routine. This will help make a difference as they grow as they will be getting less from the small amounts of protein...
So all I will say is if a sleep pattern changes and your PKU'er acts out of character don't worry this is to be expected... But let's not pin PKU on everything 😂😂 we don't want to excuse any naughty behaviour on PKU... But don't panic if sleeping patterns change, I've been told that this is pretty common in PKU so do not worry
I hope this helps you all in the future when tired and worried that you'll never get those lovely 8 hour sleeps back they will soon enough!
Wednesday, 25 May 2016
Weaning - Food Diary
Breakfast
At 8am I have my first bottle of cow & gate and chill
At 10am I sit in my highchair for some yummy fruit sometimes strawberries, sometimes peach... However when my rusks arrive I will have rusks and milk yummy!
Lunch
At 12pm I get another bottle of cow & gate, when I have established three meals I will no longer get cow & gate but measured amounts of protein foods like peas at dinner time... Ummm not sure I'm gonna like peas otherwise I'm making this whole weaning thing to easy for mummy and dada
At 2pm I get put back in my highchair (I like it I'm like the queen demanding my food) I normally don't have lunch but it's new and interesting and this is where I get fruit yummy! I'm just waiting on those rusk thingys then it will all change.
Dinner
At 4pm I have another bottle of cow & gate yum yum, I will of course be loosing this privilege soon once my mummy and dada change it to something else... I heard them say mash potatoes, whatever that is...
6pm we're finally at dinner time. At the moment I have vegetables like sweet potato, califlower, carrot... But when my pasta arrives I will have pasta with vegetables mixed in, this sounds interesting I must say...
8pm I get a bottle of milk or sno-pro and then I fall asleep and dream. Of course things will change soon, I won't have that Anamix milk I'll have gel, squeezies or first spoon starting off once a day (breakfast) moving on to three times a day (before each meal) then of course I will have my measured protein instead of cow & gate and drink water and juice instead of milk... Mummy and dada promise I'll get my bottle of milk before bed every night... I'll hold them to that!
Of course being a baby human my times do change a but for my cow & gate but mummy and dada still make sure my food is the same time everyday, they did say something about that changing when I'm not on cow & gate to 9am, 1pm and 5pm so that I get bathed and in bed by 8pm after my bottle of milk of course.
Well that's my diary for now... When I'm even older it will completely change again!
Thanks for reading
Amelia Xx
At 8am I have my first bottle of cow & gate and chill
At 10am I sit in my highchair for some yummy fruit sometimes strawberries, sometimes peach... However when my rusks arrive I will have rusks and milk yummy!
Lunch
At 12pm I get another bottle of cow & gate, when I have established three meals I will no longer get cow & gate but measured amounts of protein foods like peas at dinner time... Ummm not sure I'm gonna like peas otherwise I'm making this whole weaning thing to easy for mummy and dada
At 2pm I get put back in my highchair (I like it I'm like the queen demanding my food) I normally don't have lunch but it's new and interesting and this is where I get fruit yummy! I'm just waiting on those rusk thingys then it will all change.
Dinner
At 4pm I have another bottle of cow & gate yum yum, I will of course be loosing this privilege soon once my mummy and dada change it to something else... I heard them say mash potatoes, whatever that is...
6pm we're finally at dinner time. At the moment I have vegetables like sweet potato, califlower, carrot... But when my pasta arrives I will have pasta with vegetables mixed in, this sounds interesting I must say...
8pm I get a bottle of milk or sno-pro and then I fall asleep and dream. Of course things will change soon, I won't have that Anamix milk I'll have gel, squeezies or first spoon starting off once a day (breakfast) moving on to three times a day (before each meal) then of course I will have my measured protein instead of cow & gate and drink water and juice instead of milk... Mummy and dada promise I'll get my bottle of milk before bed every night... I'll hold them to that!
Of course being a baby human my times do change a but for my cow & gate but mummy and dada still make sure my food is the same time everyday, they did say something about that changing when I'm not on cow & gate to 9am, 1pm and 5pm so that I get bathed and in bed by 8pm after my bottle of milk of course.
Well that's my diary for now... When I'm even older it will completely change again!
Thanks for reading
Amelia Xx
Wednesday, 18 May 2016
When It All Changed
To tell the true story of Amelia's journey we have to start at the very beginning...
January 5th 2016 Amelia just 5 days old had her heel prick, all children have this check done at this age. However this became a crucial check for Amelia. Like most people I didn't fully know much about the 5 day check, all I knew is you don't hear anything unless something is wrong.
On January 7th I got a phone call while out at the range shopping with my new beautiful baby and my husband. I felt amazing I enjoyed my new purpose as a mummy to this little baby. However when I got the call my heart sank a little, all they told me was that Amelia had Phenylketonuria and that we needed to get to Bristol hospital the following day as it was urgent.
On the 8th January we learnt all we could about PKU we embraced it and have since found it easy to come to terms with. I still get a pain in my heart every now and then but I know that my little girl will flourish and become a gorgeous healthily girl full of fun and loving memories. We couldn't however have become so relaxed about this without the awesome support we have received from Bristol and Truro hospital and Amelia has an amazing team ready to help whenever we need it.
All I think about is if Amelua was born when this early screening wasn't done she wouldn't have the chance she has today, I take that as a blessing and remind myself that it could have been so much worse. I'm very lucky that I have Amelia in my life, I wouldn't change a thing. We are on this journey together.
When I have my next baby, the screening will be even earlier after 48hours of being in the new world the heel prick will be done to find out even earlier is they also have PKU... And between you and me as bad as it may sound to other people, I would hope that they also have PKU... I know for people reading this not in this situation will find it very hard to understand, it sounds like I'm wishing an illness on my not even here child but it would hurt even more to see them both being brought up differently... But who knows what will happen...
All I know right now is I have a daughter with PKU, she was screened early enough for us to come to terms with her condition, early enough to start the monitoring and do something to stop any damage happening.
I also know that Amelia Rose Meaney may have PKU but she has no limits, she will achieve whatever she wants most most of all she is awesome and so much braver than anyone I have ever met.
I love my daughter no matter what!
January 5th 2016 Amelia just 5 days old had her heel prick, all children have this check done at this age. However this became a crucial check for Amelia. Like most people I didn't fully know much about the 5 day check, all I knew is you don't hear anything unless something is wrong.
On January 7th I got a phone call while out at the range shopping with my new beautiful baby and my husband. I felt amazing I enjoyed my new purpose as a mummy to this little baby. However when I got the call my heart sank a little, all they told me was that Amelia had Phenylketonuria and that we needed to get to Bristol hospital the following day as it was urgent.
On the 8th January we learnt all we could about PKU we embraced it and have since found it easy to come to terms with. I still get a pain in my heart every now and then but I know that my little girl will flourish and become a gorgeous healthily girl full of fun and loving memories. We couldn't however have become so relaxed about this without the awesome support we have received from Bristol and Truro hospital and Amelia has an amazing team ready to help whenever we need it.
All I think about is if Amelua was born when this early screening wasn't done she wouldn't have the chance she has today, I take that as a blessing and remind myself that it could have been so much worse. I'm very lucky that I have Amelia in my life, I wouldn't change a thing. We are on this journey together.
When I have my next baby, the screening will be even earlier after 48hours of being in the new world the heel prick will be done to find out even earlier is they also have PKU... And between you and me as bad as it may sound to other people, I would hope that they also have PKU... I know for people reading this not in this situation will find it very hard to understand, it sounds like I'm wishing an illness on my not even here child but it would hurt even more to see them both being brought up differently... But who knows what will happen...
All I know right now is I have a daughter with PKU, she was screened early enough for us to come to terms with her condition, early enough to start the monitoring and do something to stop any damage happening.
I also know that Amelia Rose Meaney may have PKU but she has no limits, she will achieve whatever she wants most most of all she is awesome and so much braver than anyone I have ever met.
I love my daughter no matter what!
Thursday, 12 May 2016
Fruit & Vegetables
Fruit allowed freely in the diet
- Apples
- Apricots (fresh & dried)
- Bilberries
- Blackberries
- Cherries
- Clementines
- Cranberries
- Currants
- Damsons
- Figs
- Ginger
- Gooseberries
- Grapes
- Grapefruit
- Guava
- Kiwi
- Kumquat
- Lemon
- Lime
- Loganberries
- Lychee
- Mandarin
- Mango
- Melon
- Mixed peel mulberries
- Nectarine
- Olives
- Orange
- Papaya
- Peach (not dried)
- Pear
- Pineapple
- Plum
- Pomegranate
- Prunes
- Quince
- Rasins
- Raspberries
- Rhubarb
- Satsuma
- Strawberries
- Sultanas
- Sharon fruit
- Star fruit
- Tangerine
Vegetables allowed freely in the diet
- Artichoke (globe and Jerusalem)
- Aubergine
- Beetroot
- Cabbage
- Carrots
- Cassava
- Cauliflower
- Celeriac
- Chicory
- Courgettes
- Cucumber
- Endive
- Fennel
- French Beans
- Gerkin
- Herbs - all free
- Lady Fingers (okra)
- Leek
- Lettuce
- Marrow
- Mushrooms
- Mustard & Cress
- Onion
- Parsnip
- Pepper (green/red)
- Pumpkin
- Pickled Vegetables
- Radish
- Squash (butternut, acorn, spaghetti)
- Swede
- Sweet Potato
- Tomato
- Turnip
- Watercress
- Water Chestnuts
Fruits & Vegetables that need to be limited to 1 serving per day
Fruit
- Bananas
- Banana Chips
- Dates
- Figs (dried only)
- Peaches (dried only)
- Physalis
- Mixed dry fruit (1 small packet a day)
Vegetables
- Asparagus
- Beansprouts
- Broccoli
- Plantain
- Runner Beans
- Seakale
- Apples
- Apricots (fresh & dried)
- Bilberries
- Blackberries
- Cherries
- Clementines
- Cranberries
- Currants
- Damsons
- Figs
- Ginger
- Gooseberries
- Grapes
- Grapefruit
- Guava
- Kiwi
- Kumquat
- Lemon
- Lime
- Loganberries
- Lychee
- Mandarin
- Mango
- Melon
- Mixed peel mulberries
- Nectarine
- Olives
- Orange
- Papaya
- Peach (not dried)
- Pear
- Pineapple
- Plum
- Pomegranate
- Prunes
- Quince
- Rasins
- Raspberries
- Rhubarb
- Satsuma
- Strawberries
- Sultanas
- Sharon fruit
- Star fruit
- Tangerine
Vegetables allowed freely in the diet
- Artichoke (globe and Jerusalem)
- Aubergine
- Beetroot
- Cabbage
- Carrots
- Cassava
- Cauliflower
- Celeriac
- Chicory
- Courgettes
- Cucumber
- Endive
- Fennel
- French Beans
- Gerkin
- Herbs - all free
- Lady Fingers (okra)
- Leek
- Lettuce
- Marrow
- Mushrooms
- Mustard & Cress
- Onion
- Parsnip
- Pepper (green/red)
- Pumpkin
- Pickled Vegetables
- Radish
- Squash (butternut, acorn, spaghetti)
- Swede
- Sweet Potato
- Tomato
- Turnip
- Watercress
- Water Chestnuts
Fruits & Vegetables that need to be limited to 1 serving per day
Fruit
- Bananas
- Banana Chips
- Dates
- Figs (dried only)
- Peaches (dried only)
- Physalis
- Mixed dry fruit (1 small packet a day)
Vegetables
- Asparagus
- Beansprouts
- Broccoli
- Plantain
- Runner Beans
- Seakale
Weaning - Stage Three
Low protein finger foods
By the age of 7 months your baby might want to start feeding themselves. This should be encouraged with the use of low protein finger foods.
Low protein finger foods:
- Lightly cooked free vegetables i.e soft carrot sticks
- Soft pieces of free fruit i.e pear, peach, banana
- Low protein rusks
- Toasted fingers of low protein bread
- Low protein pasta
- Low protein cereal
- Low protein biscuits
Remember never leave children unattended when eating
Low protein milk
At this stage you might want to start introducing a low protein milk. Currently there are 4 on the market: Prozero, Sno-pro, Loprofin and Taranus Dalia PKU drink. These can be used in recipes to replace milk and from the age of 9 months they can be introduced as a milk replacement drink.
By the age of 7 months your baby might want to start feeding themselves. This should be encouraged with the use of low protein finger foods.
Low protein finger foods:
- Lightly cooked free vegetables i.e soft carrot sticks
- Soft pieces of free fruit i.e pear, peach, banana
- Low protein rusks
- Toasted fingers of low protein bread
- Low protein pasta
- Low protein cereal
- Low protein biscuits
Remember never leave children unattended when eating
Low protein milk
At this stage you might want to start introducing a low protein milk. Currently there are 4 on the market: Prozero, Sno-pro, Loprofin and Taranus Dalia PKU drink. These can be used in recipes to replace milk and from the age of 9 months they can be introduced as a milk replacement drink.
Weaning - Stage Two Continued
Introduction of Exchanges
If we fed a measured amount of 1 protein exchange of food we will have to decrease the infant formula or breastmilk by 1 protein exchange. The aim will be to swap out 1 protein exchange at a time. This can be done every 1 to 2 weeks or slower depending on your baby.
Please see the list below for some first home cooked protein exchanges
List of protein exchanges (1g of protein)
- 80g of boiled/mashed potato
- 45g of boiled rice
- 25g of peas (fresh/frozen)
- 25g of boiled spinach
- 20g of baked beans
- 10g of weetabix (not before 6 months)
Using exchange free foods
It is important to keep using exchange free foods and low protein prescribed foods to complement the exchanges and to provide energy for your baby to grow.
Second stage protein substitute
At this stage your baby's intake of PKU Anamix Infant may start to decrease as they are eating more solids. It is very important that they receive a set amount of phenylalanine free protein so it will be time to start them on the second stage protein substitutes. There are a few different products available: PKU Anamix First Spoon, PKU Gel and PKU Squeezie.
If we fed a measured amount of 1 protein exchange of food we will have to decrease the infant formula or breastmilk by 1 protein exchange. The aim will be to swap out 1 protein exchange at a time. This can be done every 1 to 2 weeks or slower depending on your baby.
Please see the list below for some first home cooked protein exchanges
List of protein exchanges (1g of protein)
- 80g of boiled/mashed potato
- 45g of boiled rice
- 25g of peas (fresh/frozen)
- 25g of boiled spinach
- 20g of baked beans
- 10g of weetabix (not before 6 months)
Using exchange free foods
It is important to keep using exchange free foods and low protein prescribed foods to complement the exchanges and to provide energy for your baby to grow.
Second stage protein substitute
At this stage your baby's intake of PKU Anamix Infant may start to decrease as they are eating more solids. It is very important that they receive a set amount of phenylalanine free protein so it will be time to start them on the second stage protein substitutes. There are a few different products available: PKU Anamix First Spoon, PKU Gel and PKU Squeezie.
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