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Medication

Medication is one way that Barth Syndrome is managed. There are a number of medications that you may be familiar with or need to take but are not sure what they do.

G-CSF

G-CSF is a type of protein that is called a growth factor. It is made in the bone marrow and stimulates the bone marrow to make neutrophils. The bone marrow is the material inside the bones where blood cells are made.  Your body may struggle to make G-CSF due to Barth Syndrome and so you may need to take it as an injection. G-CSF is given by injection just under the skin by your parents or you when you are at home. If you tend to have frequent low neutrophil counts and these are causing frequent mouth ulcers or making you get bacterial infections, these G-CSF injections will usually make you feel much better. Most people need injections three times per week but some people need them only twice a week and others on alternate days. You need to have your blood checked regularly through a finger prick test, to make sure you are on the right dose. We will usually ask you to check your blood count either just before you have a dose of G-CSF (we call this a trough count) or on the day after your injection (we call this a peak count). This is to try to make sure that your neutrophil count isn't going either too low or too high.

Here are a few top tips for taking finger prick tests:

  • Wash your hands in warm water to clean them and warm them up.
  • Give your hands a good shake to get the blood to the end of your finger tips.
  • Avoid pricking the finger's tip, this part of the finger is very sensitive and it can hurt more. Aim for the side of your finger instead.
  • Once you've pricked your finger, rub a tiny amount of Vaseline from a clean cotton bud over the area you pricked. This will help the blood to fall in individual droplets, right into your vial/tube. Wait a couple of seconds before squeezing your finger.
  • Hold your hand down below your waist with the tube positioned to catch the drops as they fall. If you need to, you can gently squeeze your finger at the base (near the hand) and move towards the tip.
  • Shake the tube gently; there is a chemical on the sides of the sample tube that stops the sample from clotting.  The blood needs to mix with this, otherwise it will clot and the sample will be of no use.
  • Try not to use the same place for your injections or blood tests each time. Some individuals choose to give their G-CSF around their tummy button, so that they are using a different place each time.