So we had Joshua’s visit to the metabolic unit in Temple Street last week. I’m not going to lie I don’t really look forward to these visits. We are still having trouble with Joshua and blood samples so they don’t get done often enough. Also Joshua doesn’t eat much of the low protein food that can be just ordered from the chemist. I have to bake a lot or order from the UK.
So in we went and Joshua was weighed and measured and he hasn’t gained much weight but his height and weight are on the 50th percentile so they are in line with each other so I was happy with that!
Then onto dietician visit. We do the usual list of what he eats during the day, which at this stage I feel like telling them just to look at the last visit because it hasn’t really changed much. Then the usual 100 questions about all the low protein products that are available and he doesn’t eat. Yes I have tried them multiple times and no he still doesn’t like them!!
Anyway deep breath!!!!!
Then we usually do a check up with the nurses which goes a lot smoother and they will take a blood sample from Joshua as he is much better at doing it there than at home.
A quick trip to the stock press if we need anything that we cant get from the chemist and we are out the door. This time we got some cake mix and the new little cakes which I will do a post on once we have gotten all the products and tested them.
I understand the staff have a job to do but I do feel sometimes they don’t understand the difficulties we face on a day to day basis with the diet and to be told that I am wasting an exchange on a biscuit and should be used for something else just proves my point. Sometimes all Joshua wants is a regular biscuit and if he has an exchange available I will give it to him!
Joshua has been increased to 4 exchanges and he was previously on 3 so he was delighted about that.
We are not back to Temple Street for another 6 months as we have a doctors visit that time so we are going to do everything in one day.
Not every visit is as disheartening, I have been in there and be given great tips about collecting blood and making it easier and trying new needles. I suppose its a bit hit and miss and hopefully we’ll have more good than bad visits in the future.
Will do a new product post soon.
So on a day to day basis I think Joshua handles his PKU very well. He very rarely complains and when he does he gets over it quick enough.
Then there are days like today. We are tidying up and Joshua said to me “Mam how bad is ham for my PKU?” I told him very bad and he admitted that he just ate a tiny piece!!!! my heart sank. I sat him down on the sofa and we had “The PKU Chat” again. We chatted about how he knows that he can’t eat certain foods because they are high protein and how he has his own foods that are low protein. He then started to cry because he thought he was going to get into trouble. Only a pinkie promise would stop the tears!!
This is the part of PKU that I hate. The part that makes my son cry because he ate something that most people wouldn’t even think twice about. The part that causes tears over food, something that normally brings joy to people.
I wish with all my heart there was a cure for this. I wish the government would pay for medication so Joshua could expand his diet. Above all I wish PKU never existed.
Of course I’ll never say this to Joshua. I tell him he is perfect just the way he is and he wouldn’t be Joshua without his PKU. It’s part of him just as much as his blue eyes or his sense of humour.
Onwards and upwards we’ll mark today as a bad day for PKU and will try for better tomorrow.
This is a simple low protein version of regular shepherds pie that I make for the rest of the family. I find it hard sometimes to come up with alternative ways to serve mashed potato and veg to Joshua and this was a winner. He even asked for seconds which is never does!!!
So we just used broccoli and carrots for this one. Chopped into a small dish and pour over gravy – the gravy is quite thick. Put into the oven until veg is soft. Make the mash potato separately. Once the veg is cooked layer over the mash and put back into the oven to brown. At this stage you could add violife cheese I just had none in the fridge this time! The cheese melts nicely on top of the pie.
Has anyone used any other veg for a shepherds pie? Let me know in the comments!
Hope you enjoy.
So back to school has begun for most of us and back again is the challenge of what to put in Joshua’s lunchbox! Most days he has the following:
- Cheese sandwich – we use a bread maker for his bread and violife cheese.
- Yogurt and Jelly – we use the baby fruit pots and jelly pots from aldi for this.
- Mini packet of raisins.
- Fruit salad – I put this in a separate container and usually have strawberries, sliced grapes, melon and orange
I put little baby carrots in today to see would he eat them and he liked them so I’ll probably get a couple of days out of that before he starts with “I don’t like them anymore!”
So if anyone has any ideas for lunchboxes please leave a comment below. The school doesn’t allow cereal bars and they are usually quite high in protein for Joshua as he is only on 3 exchanges at the moment. I sometimes make pancakes and he’ll take one of them in but I feel like he eats the same stuff in his lunchbox all the time. Maybe all kids are the same and I’m just paranoid about it!!
Will update again soon
Well look at what I found. Can’t believe I used to have this blog about Joshua and his pku.
It’s great to look back and read about what it was like when he was little. He was only 3 and a half when I last updated. Joshua is now 7 and a half!! We have come so far since last posted. We have had ups and downs with PKU and sometimes life can be very difficult for Joshua and ourselves.
I think I’ll restart this pkuandus and sure even if nobody reads it Joshua will be able to read it when he is older and see how much he has grown with his diet and he’ll know that I was always proud of him in the way he handled the diet even when he found it very tough and cried about the unfairness of it and why he had to have pku.
If there is anything anyone wants to see on the page please let me know and please feel free to share especially to new parents who have just received their pku diagnosis. It can feel so overwhelming when you first hear your child has PKU and it would be nice for those parents to be able to hear that although it is hard it is manageable. There will be tough times but there will also be wonderful times where you are super proud of your child because they refused chocolate and stated they can’t eat that because they have PKU!!
That’s about it for now will post again soon
Can’t believe its been March since I updated this blog completely forgot about it. It’s great to look back on it and see how far we have come and the struggles we were having are getting easier and easier every day.
So I’m going to pick this back up and try update it every week (or more often if I get the time). I’m not sure if its helpful at all to anyone but sure it’s nice reading for me to have in years to come ha ha!!!
So Joshua is 3.5 years old now and in playschool. Doing really well. Can’t believe my little boy is growing up so fast 😦
I was very nervous about him attending playschool with regards to his PKU. I had been into the playschool a few times in advance to prepare them and have a chat and they assured me everything would be fine and apart from one slip up everything is going really well. I do find it hard sometimes to pack a lunch for Joshua as surprise surprise he is still a bit fussy. Also doesn’t help when mammy has been lazy and has no bread made!!!
With regards to exchanges Joshua is only on 3.5 exchanges and we do find this a bit hard. The most he ever really goes up to is 5 and for the most part is usually on 4.We had a very high level last week of 960 and it hasn’t been that high since he was born! Thankfully it has gone back down to 450 this week.
I did have concerns about Joshua’s learning ability relating to his PKU and simple things like learning and remembering numbers but after a little extra work he is coming on really well and is at the same level as the other children in his class so I’m happy about that. It gets very scary (as I’m sure it does for every mammy pku or not) when you think your child might be struggling.
Apart from that Joshua is a bundle of fun and his pku doesn’t hold him back at all. His biggest weakness is yogurts so I do try to make sure I have fruit pots that he can have.
We operate the traffic light system with him and he seems to really understand that so after Christmas we will make a food chart with the traffic lights and food pics to remind him what he can and can’t have.
Phew that’s a long post so I’ll leave it at that for now. Feel free to leave any comments and thanks for reading if you got to the end!!
Mammy of J
Well I felt really guilty for not doing any new baking for a while so this morning I had a bit of extra energy and got out the fate cookbook. I was looking for something simple to make with not too many ingredients so I came across the raspberry muffins and the chocolate banana loaf. They both were very simple to make and turned out really well. In case anyone hasn’t got the fate book here are the recipes.
300g Fate low protein all purpose mix
150g soft light brown sugar
1tsp baking powder
120g soft margarine
1 tsp vanilla essence
120g frozen raspberries
Add the all purpose mix, brown sugar and baking powder together. Mix well. Then add the margarine, water and vanilla essence. Mix until smooth. Add frozen raspberries using a metal spoon. Don’t stir the fruit for too long as the juice will start to come out and the muffins will end up pink. This mix is enough to make 12 large muffins (although I did have a bit left over!) Bake in a pre-heated oven at 200c or gas mark 6 for about 30 mins. Can be frozen!
Chocolate and Banana Loaf
1 x 250 g of Fate LP Chocolate Flavour Cake Mix
65g soft margarine
1 large banana
Place the cake mix, margarine, water and banana (roughly mashed) into a bowl. Mix until smooth (you can use an electric mixer). Don’t worry if you have chunks of banana in the mix it will add texture to the loaf. Pour into a greased baking tin and bake in the oven for 35 – 40 mins at 190c or gas mark 5.
I’ve posted a picture of the muffins and will try to take one of the loaf later.
Well we had our appointment in Temple Street and everything is going great thank god!! Joshua’s weight is back up in the 95th percentile which was great news as his weight had dropped at the last appointment due to not eating much. Height is fine and we are now doing bloods every 2 weeks as long as they are stable so good news all round!!
Joshua is back eating much better now. He eats a bowl of frosties for breakfast (about half an exchange measured out with the blue scoop) with a small bit of apple juice. We use the pro zero milk which he is finally taking for me and drinks it out of the end of the bowl!! He’ll sometimes have a bowl of hot breakfast cereal at 10am before naptime. Lunchtime is still a bit hit and miss. Some days he may only eat a rice cracker or two and sometimes he’ll have a waffle and fruit or else nothing!!!
Dinner is usually just an lp version of whatever the family is having and spuds and veg is still the favourite!!!
Temple street have the moulds in for the easter eggs so we got a few different ones and will be giving that a go this year as I cheated and bought the egg last year. I think i’ll probably make a few of the regular egg shapes and wrap them to give to our family so they can give them to Joshua.
We also took a loaf of the juvela bread home from temple street to see if Joshua would try it again as with the new baby coming (10.5 weeks yay!!!) i dont want to be stressing about baking a loaf of bread. So we gave it a go this morning and not only did he eat one slice toasted with butter and jam but he asked for a second slice so success 🙂
That’s about everything for now. I did explain to Temple Street that Joshua is very fussy about trying new things and they said that children need to experience new foods numerous times (something silly like 10 times!!) before they decide whether they like it or not so I’ll keep offering the new lp foods that we bake and hopefully he’ll take to it eventually.
Will update again soon
Recipe for Spanish Omelette
For the Vegetable Filling:
1 tbsp oil
Veg of your choice (I used 1 onion, 1 tomato, some broccoli and mushrooms)
1 tbsp mixed herbs
Salt and pepper to season
For the Omelette:
75g Fate Low Protein All Purpose Mix
1 tsp baking powder
Salt and pepper to season
A little yellow colouring (optional – I didn’t have this so used a tiny bit of gravy browning!)
A little oil for cook
Prepare the Filling
Heat a frying pan over a medium heat and add the oil. When hot add the butter and add the veg until they are soft. Season with the salt and pepper. Place on a plate to cool.
Recipe for Spanish Omelette
Prepare the Omelette:
In a separate bowl, plate the Fate all purpose mix, baking powder, salt and pepper. Mix well. Measure the oil and water and add a few drops of colouring. Pour the water and oil onto the dry ingredients and using an electric hand mixer mix on high speed for about 1 ½ minutes. It should then be a smooth and light mixture which looks like a light and creamy mayonnaise. Using a spoon gently stir in the veg filling. (It doesn’t have to be completely cold.) Heat your frying pan until quite hot then add a little oil. Add the omelette mixeture to the pan and quickly spread it over the base of the pan. Leave to cook over a gently heat for about 2 – 3 minutes until the underside is browned and the top of the omelette looks dry. Turn the omelette over using a wide spatula, or you might find it easier to tip the omelette right over onto a large plate so that the cooked side is on the top. Then gently slide the omelette back into the pan (uncooked side down) into the pan. Leave to cook for another minute or so.
It freezes well and can be served hot or cold.
Haven’t been able to post anything all last week as I was sick with the flu but I made Joshua the Spanish Omelette from the Fate cookbook. Unfortunately he didn’t eat it but it turned out really well so I reckon I’ll just have to offer it a couple of times as he is really fussy about trying new things. I’ll add the receipe to the side of the page for anyone that doesn’t have the fate book.
Last night I made a fruit crumble for all the family and just spooned Joshua’s portion into a small ramikan dish and topped his with a low protein version of crumble. To do this I just added some fate all purpose mix, butter and brown sugar and it browned lovely in the oven. Joshua ate some of it which was good for him!!!
Going to make some veggie rosti’s from the Annabel Karmel website and if they turn out I’ll put up the receipe. Again I’ll just substitute any regular flour for the fate all purpose mix and see if it works out.
That’s about it for now. Still trying to get Joshua to eat new things. Oh I made more fate sausages too but again he was very cautious about eating them. However I did read in Jo Frost’s Confident Toddler Care but that it can take up to 10 times of offering a new food before a fussy eater will actually eat it so I’m not getting too stressed out about it and will just keep offering the new stuff.
On a positive note Joshua did wolf down 2 veggie fingers with his dinner last night and he had gone off these for a while!!!
Will post again soon with more receipes.