Update on Bubs and Congenital Hypothyroidism

Our youngest son is going to be 3 in September and when he was born he was found to have no thyroid. If you are new to my blog and want to read more about this you can do so here.

Today I am going to do a little update on how things are going. When We found out Bubs had CH there was very little on the internet to read up on. I could find plenty of information from the British Thyroid Foundation, but actually stories from real people were really limited. I think in a time like this of finding out your child has something not quite right, reading real life stories really helps.

Way back in September 2014 at the start of our journey, Bubs has a cannula in before his nuclear scan to see if he had a thyroid or not.

So here we are at almost 3 years old and let me start off by saying Bubs is doing so well. I am going to list a few things about his current situation

  • counts to 10
  • recognises all numbers 1 to 10 when written down
  • counts from 10-20 with a tiny bit of help
  • is potty trained day and night
  • never stops talking
  • loves to lay with little toy figures and trains
  • as of 8th August he weighs 2 stone 9lbs
  • as of 8th August his TSH levels are bang on and we don’t need another blood test for 6 months.
  • is very caring and thoughtful
  • still sleeps in his cot but with the side off
  • wears age 2-3 clothing
  • take 3.3ml of liquid thyroxine each day (100mcg in 5ml)

We had a blood test and found out the results on the 8th August and all of his levels were bang on so now we go another 6 months before we need to go back. When we first found out we were having bloods done every week, the more stable he gets each time the more time between bloods. Bubs levels have been pretty stable for the last 2 years and so we can go every 6 months with a good test. I do however have our consultants phone number so if ¬†think his levels are out I can call straight up and request a blood test. I know the signs to look out for now and just know if his levels are not correct. So things to look out for which can appear and happen if your levels are not correct…

  • dry skin
  • more tired than normal
  • grey colour around the eyes
  • constipation

In the past I have had to call up and request a blood test before one is due because I thought Bubs levels were out, each time I have been correct and he has needed a slight dose change.

Our son has no thyroid at all so he has always needed a slightly higher dose than other people his age.

Overall for anyone who may have found this post that is way back at the start of your journey, please don’t worry (hard I know) but as long as you make sure your child’s levels are monitored and you give them their medication every day without fail all will be fine.

I am over the moon with Bubs and how amazing he is doing. He is no different to anyone else, not having a thyroid has no impact on him at all and no one would ever know he was any different unless we tell them.

Here we are at now almost 3 years old… He loves bubbles

 

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