Was just thinking of this forum recently and how helpful this was 2 years ago when I was in the depth of despair trying to help by DS. He is now 2.5 years and doing fantastic. I really believe that the hardship we went through in the first year has made these toddler years so much easier. Hugh is a great sleeper now, pain doesn’t bother him, he is incredibly affectionate and will only get excited about things that really bother him (unlike his big brother who as a toddler and frequently still treated everything as an issue).
And loathe as I was to accept it he really did just have to grow his own way out of this. However, I am a firm believer in drugs – the combination of Losec and Gaviscon did ease the symptoms. Zantac was useless. I also found a slight breakthrough for me – when I stopped feeling like I personally had to hold and comfort HUgh through all the pain. I realised that he was better off going down to bed and crying for 40 minutes and then sleeping for a few hours than me holding him and comforting his on and off but him not really falling into any proper sleep pattern. I also realised that I knew a lot more about this illness (thanks to this forum) than many people I met in the healthcare system here.
HUgh’s speech is still a little slow but is getting there. He is also tiny 0.4% by weight. Some people in health system here still try to worry me but just had great paediatrician confirm what I know that he is doing great.
I feel so much for all of you going through this right now. Good luck.
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