Our son has Congenital Hypothyroidism – UPDATED

On the 15th September 2014 our beautiful second son was born, 5 days later our world was shattered when we found out he was born with congenital hypothyroidism. I posted 2 years ago about the day we found out our son had congenital hypothyroidism If you are at the start of your journey and have just ended up here, go back and read that post first. We are here now march 2018 3 years on and I am going to update you on our journey and where we are currently and how everything is now.

Bubs is now 3 and a half years old and he is doing so well. I can still remember the day we were told about the CH and I never ever as long as I live will forget that BUT things get easier and to the point where you don’t realise anything is different.

Bubs last blood test was Feb 2018 and there was a slight dose increase from 3 mcg up to 3.5 mcg liquid thyroxine. He was actually supposed to have an appointment with the pediatrician but we couldn’t make it due to the really heavy snow, this has now been booked for May 2018. At the last appointment though the pediatrician was very happy with how he is doing. Bubs is growing as normal and he is just like any other child.

He is much more aware now that he takes medication but I don’t think he understands why he takes it, nor does he realise he is any different to his brother. He asks to do his own medication each morning and likes to get involved getting it ready in the oral syringe. Although he likes to sort the thyroxine out himself he sometimes. he can be a little monkey trying to get him to take it. He will open his mouth then run off but is always laughing so it is like a game to him. I never force him to take it because in the end he will come over to me and take it fine, he just likes to be a cheeky boy.

The fact he has no thyroid has no effect on him what so ever. He runs around with his older brother, they play fight, they love each other, they fall out and make up just like any other siblings. I know things won’t always be a breeze because his levels will change as he grows up, however as long as we keep his levels correct he will be fine.

The things I look out for which are signs his levels may-be out are…. dry skin, constipation and tiredness. If I notice anything like these I can call up the hospital and get an appointment straight away for a blood test. We have been going every 6 months but due to the recent change we have to go back again in 6 weeks just to make sure it is enough of an increase/not too much.

All in all I am totally at peace with it all now. I have struggled for a very long time to come to terms with his diagnosis but as he has grown up it has become easier. The older he grows I can see he is developing well and is well ahead in mental terms. He can count to 50, knows his ABC and can recognise his letters and numbers. He knows that certain numbers put together make another number such as 1 and 1 together make 11 and 1 and 5 together make 15. He is really very intelligent and this makes me so proud of him. The more and more he grows the more and more at peace I feel with it all.

As ever feel free to message me anytime whatever stage of the journey you are at.

 

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1 Comment

  1. Doug (Bubs daddy) 6th April 2018 / 23:07

    He’s a beautiful, loving, intelligent and happy child. He makes us so proud each and every day. The toughest days are the early ones. For those reading this who have just found out their child has this condition, please rest assured your journey will be fine. But also, please remember, your child already has a unique(ish) story that will make them so popular. Every cloud really does have a silver lining.

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