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FIRST 6 MONTHS
1 month
Blood Spots for Phe Monitoring
DRIED BLOOD SPOTS

Providing dried blood spots for Phenylalanine (phe) monitoring is essential in PKU, as this enables your dietitian to check your child’s phe levels are within a target range and make any amendments needed to their diet.

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Your dietitian will advise you on how often blood spots need to be provided for testing. 

It is important that you, and eventually your child, become used to providing good quality blood spots. If poor quality blood spots are received at the lab, they may not be accepted. 

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WHAT ARE BLOOD SPOT SAMPLES?

Blood spot samples are a drop of blood, about a centimetre in width, that are placed onto a specially made testing card. 

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This testing card takes 4 blood spot samples and is sent back to a lab where the phe level in the blood is tested. 

The results are sent to your dietitian, who will then contact you. These results show your dietitian what your child’s blood phe level is and determine if any changes need to be made to your child’s diet. These changes will always be discussed with you. 

Taking blood spot samples may seem a little daunting or even upsetting at first, but with practice you will soon become an expert and with time your child will be able to do this all by themselves. 

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WHAT EQUIPMENT WILL I NEED?

Your hospital team will have already shown you how to take a blood spot sample and will have provided you with all the supplies you need.

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Contact your metabolic nurse at the hospital if you have any questions about blood spots or if you need any more blood spot sample supplies. 

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WHERE DO I COLLECT BLOOD FROM?

While your child is still a baby, you will use their heel to collect a blood sample.

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As they grow, you will use their finger or their thumb instead. To encourage blood flow, you should always make sure heels, fingers and thumbs are warm. 

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HOW DO I COMPLETE A BLOOD SPOT CARD?

Before taking the blood spot sample, check the date on the testing card to make sure it has not expired and that all sections are completed. 

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These cards may already have a label on them with all your child’s details.  It is best practice to always check if these are correct. 

If not, you will need to add them to the card. 

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PROVIDING A GOOD QUALITY BLOOD SPOT SAMPLE

A step-by-step guide to providing a good quality blood spot sample - 

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  1. Wash your hands and your baby’s heel. As your child gets older and you start to use their fingers and thumbs, you will need to make sure they wash their hands too. 
  2. Prick their heel or finger/thumb. 
  3. Allow a drop of blood to form. 
  4. Place the blood spot card up to the drop and allow it to drip onto a circle on the card, as close to the centre as possible. Do not press the heel, or finger/thumb against the card. 
  5. Repeat step 4 using the other 3 circles on the blood spot card. 
  6. Once you have finished, cover the prick site with a little cotton wool and apply light pressure; the bleeding should stop almost immediately. 
  7. Allow the blood spots to absorb into the card.  Air dry so they lose the initial wet look, then place the card into the envelope provided.  If blood spots remain wet, they can stick to the inside of the envelope and damage the card. 
  8. Send the blood spot sample back to the hospital as soon as possible, so your baby’s blood phe level can be confirmed and reported to you.  

 

Important points to remember  

  • Have all the equipment ready before you start. 
  • Always take the blood spot sample at the same time/occasion each day, this will usually be before the first feed of the day. Your dietitian or metabolic nurse will advise. 
  • Blood spots need to be taken from 1 single drop of blood; measuring 0.7cm; this is just under a centimetre in diameter. 
  • Blood spots should be made from one single drop of blood and the diameter of the spot should be 0.7cm. If blood spots don’t meet this measurement; they are too big or too small,  the phe level result will not be accurate and the test will need to be repeated. 
  • Blood needs to be soaked right through the card so the lab can test it properly. 
  • If you have any questions about this process, contact your metabolic nurse at your hospital. 

 

Top Tips 

  • Be patient and calm; this will help relax your little one. 
  • Practice makes perfect. 
  • Give your baby lots of cuddles for reassurance.  
  • Keep baby’s heel or your child’s finger/thumb below the level of their heart to encourage blood flow. 
  • Make sure there is a collection from your post box on the day you post your results. 
  • Gradually, your child will be able to take the blood spot sample by themselves so try encouraging this progression by making it fun, i.e., let them post the blood sample to the hospital. 

 

For further information speak with your Health Care Professional or refer to the PKU Handbook; prepared by the Australasian Society for Inborn Errors of Metabolism (ASIEM). 

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