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Transition was good. Everyone was friendly, helpful and caring



The impact of metabolic conditions can be very different and so there are a number of ways that they are treated dependant on what condition you have and its individual impact on you. Your team may talk to you about diet and medication but you may also be supported by a number of other professionals such as physiotherapists, occupational therapists and speech and language therapists.

It is really important that you talk to your team about your specific treatment as metabolic conditions and the way they are managed can be very different depending on your condition.

Many metabolic conditions require dietary management, depending on your condition you will require to restrict or modify your dietary intake. As part of the transition process you will meet with the dietitian to discuss your dietary management. This will include dietary restrictions, prescription management of dietary products and your oral emergency regime (if required).

Here are some examples of dietary management in metabolic conditions:

  • PKU: The PKU diet restricts the intake of phenylalanine in your diet. This is done by using low protein foods and measured amounts of protein containing foods. As your intake of natural food will not provide enough protein for your body, you will need to take a PKU protein substitute.
  • MCADD: When well you should eat regular meals and snacks. The most important part of your daily routine is to follow a strict fasting of 12 hours overnight. As a teenager this may affect your sleeping pattern, therefore we would recommend that you set an alarm, wake up and eat an appropriate breakfast, to ensure you are within your safe fasting limit. The only dietary restriction is to avoid coconut based meals e.g. coconut curry sauces, coconut chocolate bars, coconut yoghurts.

The metabolic team dietitian can talk to you about your specific condition and any impact on your diet. They can help with any questions you may have too.

Emergency management
Some metabolic conditions require immediate management when you are unwell. You should start your emergency management with any signs of illness or reduced oral intake e.g. temperature, vomiting or diarrhoea.

The treatment can be started at home with your oral emergency regime. This is a carbohydrate solution which you have to drink every 2-3 hours day and night to provide your body with a source of energy that it can use safely. The oral emergency regime will cause no harm, therefore if you are unsure start your management and contact your metabolic team for advice.

If you do not tolerate your emergency regime, you will need to attend your local hospital, where the medical team can implement your emergency management plan.

Your metabolic team will advise you on the treatment for when you are unwell. During your transition clinic you will have the option to learn more about this treatment, including the preparation of the oral emergency regime. If your metabolic condition requires emergency management, it is important that you receive the correct care at the right time. There are a number of ways to ensure this happens:

  • Medical Alerts: on your smart phone, set up an alert about your metabolic condition.
  • Friends and family: ensure your close friends and family know about your condition and the treatment you require if you are unwell.
  • Medical alert accessories: there are multiple options available including bracelets, necklaces or cards.

Every person with a metabolic condition maybe managed with different types of medication. As part of the transition process you will learn about your medication and its importance in managing your condition.

As you grow more independent, you will have the opportunity to learn more about your prescriptions and how to manage your medication including its administration, preparation and storage. Some examples of medication include:

  • Emergency regime- Polycal tinned powder or SOS powder sachets
  • Protein supplements - drinks, shakes, pouches
  • Oral tablets
  • Intravenous enzyme replacement therapy
  • Intramuscular injections

If you have any questions about your medication please contact your metabolic team.