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!

 

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17 thoughts on “T+335

  1. Amy says:

    Sounds like things are going better for Seth and I am very glad that you are starting to get rid of medications. You are an absolute rock star in a warrior and I am so proud of you and so grateful that your mom and dad are able to get rid of things that hurt you or that make things worse…. Keep up and I’ll keep praying.

    Like

    • Paul Moss says:

      Hi my name is Paul Moss. I’m starting a monthly fundraising project and I wanted to know if you would be interested in me doing a piece on Seth’s journey to raise awareness and money for SCID.

      Like

  2. Victoria says:

    Seeing Seth doing so well,looking healthier and having a better life really does make my day. Thank you for introducing us to this beautiful little boy xx

    Like

  3. angelkhandra says:

    I am so in awe of you my hero, Seth! I am so glad you are doing better and better!

    Love to you now and always and keep getting better and better!

    Love from Kari And Kimo the dog in Minnesota! 💛💛💛

    Like

  4. southern3wheelingsa says:

    Great to hear how things are going for Seth and you guys. Keep strong. Thanks for keeping us informed, sending hugs and prayers for you all. Xoxo Bev

    Like

  5. Sandy Pityk says:

    So sorry to hear of the loss of such a dear person who has made a difference in the lives of so many children and their families. Thanks for the medical update. We can pray specifically about little Seth producing the cortisol, and about his growth. Be encouraged… our little 10 year old Gracie has grown about 7 inches since 2012 and she’s filled out so nicely. Many blessings to all of you.

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  6. Jane and Simon says:

    Thank you for sharing this good news. We think of the four of you often, and hope that you are all doing well. It’s great to hear that Seth is thriving. Good luck for the next step in your journey 💕

    Like

  7. J Arjun S says:

    I am extremely glad that you keep posting updates about SETH, and even more glad that they story is now almost done and over. Seth is at the boundary of an extremely joyous life and bright future. He has been a very strong inspiration for me in may life, since I started following him. I cannot acknowledge enough how much he has helped me. Deep down I fear and dread the days when I stop hearing about him, my hero. I bow down to all of you in humility and gratitude.
    Thanks!!!

    Like

  8. Nay says:

    My condolences for the passing of Denise Robertson, however I’m thrilled of the wonderful news that Seth has been taken off some of his medications 🙂
    Now praying his tests come back to show his body is producing Cortisol and he can be taken off the steroids as well.
    Hugs and prayers
    NC/US

    Like

  9. Paul Moss says:

    Hi my name is Paul Moss. I’m starting a monthly fundraising project and I wanted to know if you would be interested in me doing a piece on Seth’s journey to raise awareness and money for SCID.

    Like

  10. Barbara says:

    Thanks for the update. I am a fellow SCID Mom. My 3 year old son is now considered cured of SCID. I look forward to that day for Seth.

    Like

  11. Paula Malone says:

    Hello seth. Miss hearing how ur doing.
    My kids are out of school now they are so happy
    I hope u and ur family have a very good summer. Love ya seth and family

    Like

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