FAO KaleighCakes (Re: GOSH)

Just read your bit on the mealtimes thread and thought I'd talk to you separately. You might have read my threads and know my story but if not:



My son Charlie was born 12th Sept and diagnosed very quickly with the very rare condition Hyperinsulinism. He was transferred to GOSH (Rainforest ward) when 10 days old and was eventually discharged last Friday 17th December. He has had a number of scans and surgeries and the orginal condition should now be cured. However his reflux and eating is badly affected so we may need to be referred to the Gastro team.

I know a bit about PKU. Firstly I am a Biology teacher and it is on the A-Level syllabus and secondly through GOSH. In fact Charlie got a lovely star balloon from the PKU Christmas party.



I hope you and your family are managing to deal with the condition and that your son has none/few of some of the associated side effects.



H xx

Posts

  • I'll send her a link to this thread on our FB group chick x
  • Hiya hun, It must have been awful for you to have him in the hospital for so long. We are so lucky that Riley's PKU was picked up when it was and we managed to get it back under control as quickly as we did otherwose it dosnt bare thinking about. He is teething at the moment so his PHE levels are really high (should be between 120 - 360 and his are 818) which is abit worrying as they have been high for quite a while now. Its scary putting his health totally in the hands of the dieticians but we have little choice and they are all really nice and understanding.



    We didnt get to the PKUa christmas party. We didnt get the invitation untill late and couldnt make it, we will definatly be going next year.



    Hope your little man is getting better, xxx
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