T+335

I know it hasn’t been that long since my last but I though I would do more of a medical update for those who are interested in the medical side of things.

Before I start though, today is a sad day as the President of the Bubble Foundation sadly passed away. Denise Robertson worked tirelessly with the charity for over 20 years helping many children like Seth and parents like Nik and I deal with SCID and a bone marrow transplant.

Here is a word from the Bubble Foundation:

https://www.facebook.com/notes/bubble-foundation-uk/denise-we-will-all-miss-you/10153593400104716

So this week Seth went back to The Great North Children’s hospital for a routine appointment with his consultant, Dr Andy Gennery. Whilst there he had a Synacthen test. This is a test to ascertain whether or not the body is producing a hormone known as Cortisol. Cortisol is important because it helps to regulate blood pressure, the immune system helps the body deal with stress and regulate blood sugar level. The Synacthen test uses a chemical to stimulate the glands into producing Cortisol. It requires three blood tests throughout a day. The results take a bit of time to come back so we don’t know if Seth is producing Cortisol.

The importance of this for Seth is steroids! Seth has been on Prednisolone, a steroid that is a synthetic Cortisol since he was 6 months old, sometimes prolonged use of Predisolone can cause the body to stop pricing Cortisol. At times he has been on a very large amount of this in order to try and control the Graft Versus Host Disease that he had prior to this transplant. As a result Seth is, as you know, very small for his age – he is currently just in 2 to 3 years old clothing, when he is 6 years old. He also has soft bones prone to breaking as a result of prolonged steroid use. So really, we would like for him to never have to use them again – they have been a necessary evil and been a primary medication for Seth’s treatment.

So again we wait – but this time, I am not thinking about it daily/hourly or getting anxious – I might even forget about it……. well maybe not quite!

Also during this appointment Andy made a decision about the immunoglobulin that I give Seth on a weekly basis. This involves two needles being put into his legs just under the skin (subcutaneously), the medication is a thick liquid and stings when it starts infusing into his legs so he gets quite upset. But he has needed it since he was diagnosed on Friday 13th August 2010. But today – 294 weeks later – he had his last dose! This has made Seth a very happy boy! He hates it, he cries when we put the needles in until about 10 minutes after it has started, and then again taking the stickers off and the needles out at the end. This was worse when his skin was bad with the GVHD.

 http://youtu.be/RYAnd5tSZJ8 – But also I think Daddy is grateful for the end – maybe he will grow back some arm hair. Haha.

We have also been able to stop 2 more of Seth’s medicines. This means that I have been able to send more stuff to the shed cleaning out the medicine cupboard!

 

two boxes head for the shed!