PKU GEL AND WEANING

K is now 29 weeks. He has been weaning and getting on with his diet extremely well. He is enjoying his food and has a good appetite.

K started his weaning around 17 weeks old. He is now on stage 2 of his PKU weaning. The first stage of his weaning was just introducing him to PKU substitute -which contains essential vitamins and minerals- and some free food. We were given samples of Anamix First Spoon and Vitaflo PKU Gel sachets for K to try out once a day. We found that he didn't like the First Spoon and got on better with the PKU Gel. PKU Gels come in different flavours, he built up a taste for the raspberry one so we kept to it.

PKU Gel comes in 24g sachets. K is having half portions so we weigh out 12g and mix it with 15ml of boiled and cooled water. He has this mix before his food. We built it up from once a day to three times a day. His phe levels have been pretty good so he is now having 2g of protein (2 exchanges) a day. He also takes 60ml of Anamix and about 3 to 4 times a day breast milk.

He is a very happy baby, gives us lots of smiles. I say very often; he is almost reassuring us  'it's all right mummy and daddy don't worry about me. I am happy'.

List of Free Food that he has been enjoying:

• Sweet Potato Purée
• Butternut Squash Purée
• Peach Purée
• Pear Purée
• Carrot Purée
• Low Protein Hot Breakfast (on prescription) - He loves it mixed in with mango purée

We found that baby food jars (such as Hipp Organic, Ella's Kitchen etc) have been the best way for us to control his protein exchanges. We having been measuring out 1g protein equivalent of food and offering it after he finished his PKU Gel. If he is still hungry we offer him some free food from the above list.

LOW PROTEIN COOKERY LESSON

At the weekend, we went along to an organised Low Protein Diet Cookery Lesson in our local area. It was organised by the NHS dietician and the the company called Nutricia Metabolics which produces the PKU brand Loprofin. A chef came out to show how to cook Low Protein food for the PKU children to the parents, siblings and the PKU children themselves. It was a great event. We met new people in our local area with PKU condition .

We went as a whole family so  we took our 4 year old daughter E with us too. She does not have PKU. We let her take charge of the messy dough making, plaiting bread rolls etc. She really enjoyed it. She also loved the taste of the food. We felt so happy and relieved  that the food was actually very palatable and tasty.

On the day, the chef showed us how to make:
Bread (which was very fluffy and had a very good texture)
Vegetable Pizza
Savoury Pancakes
Muffins
Cookies

This looked all good fun. I then spotted a worktop with some substitute products lined up. This was a wake up call. Don't forget the substitutes! Food making is all fun but it is only one part of it as there is measuring, calculating exchanges and getting the child take their substitutes every meal time. I wanted to find out more so I asked the dieticians about the different types of the substitutes and tried some of them. I tried a substitute pouch flavoured in blueberry. It was strong tasting and it tasted very medicinal like a cough syrup. It was bitter and very sweet at the same time. I only tried a tiny drop less than 2.5 ml but the taste lingered. I understand now why they have the substitutes before their meals. I believe it was an 85g in the pouch which the child will need to finish. It's rather alot but I am hoping K won't mind the taste. Fingers cross. I was talking to one of the PKU kids who was a teenager, she did mention that she doesn't like her substitutes withour really complaining about it. She tried alternating different brands and flavours but it wasn't making any difference. I admired her courage and keeping with her diet even though she didn't like her substitutes.

In summary, the day was good fun. It was a great chance to see the food, taste it, meet other children and their parents (strangely all mums), take away Low Protein recipes and finally involve our daughter in the process so she understands her little brother's special diet.

13 WEEKS NOW

K is now over 13 weeks. He is full of smiles and gives wonderful responses to our voices; it is so lovely! Words cannot express how wonderful it feels to see him full of life. Admittedly, we had a very patchy last 13 weeks. Luckily, K's phe levels consistently have been very good, but we had our frustrating and helpless moments which still made us feel like our world has turned upside down. Without going into too much detail; some health professionals were not at all understanding or helpful and left us sickly worried without the basic care that our son needed. I don't want to go into details but all concluded that all of the difficulties we had was due to being cared by a small centre where the understanding of the condition and the support for families are very limited. We asked to be referred to a major centre after our struggles and now feel like we have turned a new clean page. Since we have been referred, our worries have lifted. We can now enjoy our growing son and no more spend time worrying if we are going to get the basic care for him. It pains to think that all this aggravation and worries could have been avoided if we started off in a major PKU centre. All this time we stay connected to NSPKU which has been absolute god send; they were so helpful and always ready to listen our worries which helped us cope.

On the other hand, our look on PKU has changed so much in this short time. At the beginning, we couldn't see ourselves getting over it or living a normal life again. We no longer afraid or intimated by it. We feel very lucky that K has a condition that can be monitored from birth and he is going to grow up healthy and normal as long as we ensure he sticks to his diet and send his blood tests to the lab. We feel have no reason to complain or feel bad for him as there are more serious conditions out there.

We have met other parents with PKU children, their knowledge and relaxed attitude did help us alot as well. I don't know why but seeing other children who has grown up with PKU did reassure me. They were absolutely gorgeous, happy children like we were told by the dietician. Seeing the results with my own eyes reassured me.

The other thing that changed for me, I actually look forward to making and preparing PKU food for K. I love cooking so it makes me pleased to know that I will be making lots of home-made food for our son. I had thought that all his food came pre-packaged from pharmacy but actually there are recipes out there where you can try to make their food look more like a normal diet. We are going to a attend a PKU cooking class in couple of weeks' time which I cannot wait!

We were told yesterday that our son is likely to have a mild PKU. I felt so happy. I don't even know what it means entirely, but I know it is another step in the right direction. I was so excited, I couldn't sleep.

FIRST MILESTONE: LEARN TO DO THE HEEL PRICK TEST

It's Sunday night. K will be having another heel prick test tomorrow morning. I still feel the knot in my stomach when I think about it. The next challenge for us this week is to learn how to do the heel prick test ourselves at home. I am dreading it but it needs to be done. I also can't help but worry about his phenylalanine levels. I hate waiting for the results. Will we ever get used to it and be relaxed about it?

K has been sleeping pretty much all the time for the last few days. He only wakes up for feeds and goes back to sleep.Sometimes we even had to wake him up for feeds because he will just sleep through. He doesn't have jaundice, we checked. I hope this is just a normal 3 week old baby behaviour. I will be checking with the Health Visitor when she visits us in couple of days.

I am feeling little bit more normal today. I managed to pick myself up and play with our daughter like we used to. Her mood lifted immediately. It must be so difficult for her. We all made a trip to supermarket in the afternoon, it was not enjoyable. Every aisle we turned into, I was telling myself ; K would not be able to eat this. No meat, no dairy, no chocolate or cakes, no rice and the list goes on... I have to find out what he will be able to eat otherwise I feel like not eating or buying food. I feel guilty eating the food he won't be allowed to. I don't know if this is normal at this stage but I hope it will pass. I have to be strong for my family...

I have just watched a very inspiring video of a young woman who has PKU talking about her experience and her mum. Watch this...

https://www.youtube.com/watch?v=dhNjfcHFEjQ

Finding out about PKU

I am an average mum with a 4 year old daughter and 20 day old son. I have decided to start this blog to record our journey with PKU as I feel this is going to be a bit of a challenging journey for our son and all of us and the family.
We found out about his condition 10 days ago. I delivered our son by C-section and had come out of hospital with great happiness and pride. We were making the most of our new addition to our little family as much as we can. The news about him having PKU had arrived on Monday morning on my mobile phone. I was having a lie down when my husband answered the phone. I didn't think anything of it until I noticed that my husband was on the phone for sometime sounding very concerned. I knew he was talking to a health professional about our son. He was asked to take K to hospital for further blood tests and that they will explain. We hadn't heard about PKU before and hadn't realised the extent of its condition until we were sat down and explained by the Dietician and the Paediatrician. When the news finally sank in and when I blinked for the first time since I entered the room, tears came rolling. I was hugging my daughter and crying on her shoulders. I felt so guilty for looking like that in front of our daughter; the last thing I wanted to do to her was to add more complications to her life and have her worried. I just couldn't hold back the tears and felt a meltdown inside me. Both my husband and I have been full of tears, lost appetite and felt a huge knot in our stomach. We feel lost, helpless and very sad. Still in shock. We still don't fully understand the meaning of a life with PKU condition and can't help but feel very sorry for our little son as he has to live with it all his life. We are so grateful that it was caught early and it can be managed to avoid permanent brain damage.

Our journey has begun...

In the last 10 days

• We have contacted the NSPKU for information and received various leaflets
• K had to have many more heel prick tests done (every other day) and the blood cards were delivered by my husband into the lab at the hospital so we could get the results on the same day
• Our son started his special PKU formula milk, topped up with breast milk

Since the initial tests, his phenylalanine levels came down from 640 to 280. As expected it is fluctuating so we are always little bit on the edge whilst waiting for his blood test results.