Moving to an Adult Metabolic Clinic and Taking Control of Your Own Diet

It may seem like a daunting prospect to leave the paediatric team you know so well but it will be a gradual process. You will be introduced to the adult team and they will set goals to help you start to take control of your low protein diet. This could include dealing with your own prescriptions, cooking for yourself, asking the home delivery company to call you rather than your parents or booking your next appointment in by yourself. Questions in clinic will be directed at you as opposed to your parents to help you build your own independence. 

When you move to the adult clinic make a list of things to take to your appointments e.g. blood phe results you have recorded, the medical products you take, a copy of your prescription etc. It’s also helpful to take a list of any questions you have, for example: 

• How often will my clinic visits be?  
• Will I receive text reminders? 
• How often do I need to send in my blood spots?  
• Can I check my blood phe results online?  
• What are my target phe levels?  
• What tests will I have at clinic visits?  
• Will I have blood tests at every clinic visit?  
• How will I be kept up to date with any new products, medicines and future developments in the management of my PKU?  
• What could happen if I stop my diet? 
• Can I have a baby if I have PKU? 

When attending the adult clinic for the first time, you, of course, can still take someone with you and if you are unsure of anything, just ask. 

The cost of these protein substitutes is largely covered by the Australian government, under the Pharmaceutical Benefits Scheme (PBS).  Your out of pocket expense will be the dispensing fee for the product, the PBS covers the cost of the protein substitute. 

Setting calendar alerts in your phone to order and collect prescriptions can help to ensure you don’t run out of product.  

To make things easier for you, some of the companies who produce specially manufactured low protein foods and protein substitutes have home delivery services, who will deliver your product to your home and remind you when your stock is low. Speak to your metabolic dietitian about setting up these services.  

If you are planning to live on campus, asking the college/university, before you arrive, for a larger room to accommodate supplies, and a refrigerator, may be helpful. If you require verbal and/or written support in order to explain your additional needs, your metabolic team can support you.  

Think about if you wish to tell your new friends about your PKU and if so, how you will explain this.  

• Practice cooking your favourite recipes from scratch. 
• Have a supply of suitable low protein snacks to hand.  
• Plan out a few weeks of meals, so you know what you need to prepare next.  
• Write out shopping lists before getting to the supermarket.  
• Batch cooking can be a useful tool to keep you on track.  

Speak with your metabolic team as to whether you should change your GP to where your college/university is located. If you need to register at your new location, your metabolic team can send a letter once you have registered in advance to explain your requirements and ensure your new GP is provided with an up-to-date list of your prescriptions. If you use a home delivery company, you will need to inform them of your new address.