I'm at the end of my tether....

Hi, I'm really looking for some help and advice. My son who is now 2yrs old has been very poorly since birth and after a colonoscopy and endoscopy last year by Dr Shah at GOSH, he was finally diagnosed with EGID and is on a wheat, milk, egg and soya free diet. He is on Neocate LCP, Ketotifen, azithromycin and ketotifen and intermittently takes prednisolone. He doesn't sleep and wakes between 8pm and midnight and then sobs and is restless for the remainder of the night. He's clingy and will not leave me alone and doesn't even settle for his daddy. I try and be so patient with him as his tummy is constantly very swollen and he tells me he's feeling poorly and that his tummy hurts but his condition is having a major impact on our family life (we have a 3yr old aswell). I'm constantly tired and tearful and am so over protective of him and am so worried about what the future holds for him. I know I'm sounding irrational but I think it's the sleep deprivation. We have minimal support from our family, despite us being very close. They think that when he wakes in the night he's just being naughty and just say I should leave him to cry, but surely if he was being naughty he would stop crying when I gave him a cuddle- which he doesn't do, he continues to be restless and does not go back into a proper sleep. His condition changes with each day that comes and he's very tempremental with his behaviour, often shouting and lashing out at us and other children for no apparent reason - presumably pain, frustration and or tiredness? I've started avoiding certain social situations which I think may make him worse and am starting to avoid certin friends as I'm so nervous of him lashing out or being a handful and them in turn thinking I'm a bad mum.I can't see the light at the end of the tunnel, I just want my little boy to be happy andf healthy. I feel so guilty that he had to have the horrenous endoscopy and can't get the images of what happened to him out of my head. Just wish I could take all of the pain and discomfort away from him. He has night sweats, has periods of lots of virtually dry nappies and then periods where he wee's so much that he leaks onto his clothes, he gets recurrent mouth ulcers and is very very pale and often gets big dark circles under his eyes. I'm so sorry to ramble on, just looking for somebody that understands xx

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