sleep problems follow up

i asked for some advice earlier in the month, and was given lots of great advice, thank you all. i wanted to post to let you know how we've been getting on. My son is still waking and screaming in pain through out the night, even though no constipation now thankfully, his behaviour is identical to that previous to diagnosis, he's angry and miserable through out the day and life is hard. I went back to gp, who advised me to get in touch with the health visitor for sleep training tips, i know ths isn't the problem as he goes to sleep no problem, do you think i should circumvent the gp, and phone his dietitian directly, or is that against protocol? xx

10 Replies

  • Hi Danielle ... just a little thought. I can remember reading a book years ago that suggested that people who had reduced levels of calcium became angry were less placid and suffered pains. I wonder if they have checked your son for his calcium levels to see whether they are normal and whether this might be of help?

    Also, has his diet been thoroughly checked for any shortfalls in minerals and vitamins?

    Are you able to apply pressure onto his tummy when he has the pains? If you cannot then it is worth perhaps getting a second opinion.

  • hi, he had his last blood test in december, they did a full blood count, anemia, thyroid function, and a test to see if any gluten has accidently been absorbed, all results came back clear, but as for the vitamins and minerals he hasn't been checked, the dietitian did say that his diet was excellent, but he's been really recently, so he could be difficient in certain vitamins, xx

  • Has his electrolites been checked.

  • no i don't think so,xx

  • Its up to you but you could ask for copies of blood tests and electrolites, then put them on here and perhaps someone will explain the results to you. Not if you are going to get over concerned. Hope your little one improves.

  • thank you i may just do that, it would be good, just to be able to communicate with ppl who talk to me like a normal person, i am not stupid, but feel it when i come out of gp, consultant appointment,i'm just trying to get my little boy happy and healthy again, xx

  • If I was you I would call the dietitian. You know your son better than the Drs. Call her and ask what she recommends. You can always say you're ringing to bring an appt forward and then briefly discuss why. Hope you get some progress soon.

  • thank you, i'm going to call this afternoon, xx

  • Hi Danielle - I have 4 children, all have various health issues (2 coeliac, 1 gluten intolerant, & 1 has autism - plus a sprinkling of other things too). I am currently dealing with 7 NHS consultants, for the children and myself.

    For what it's worth, if it was my child screaming in pain at night, I wouldn't worry about protocol - but just go ahead & phone whoever I thought could help. In my experience, my GP is grateful when I do this, rather than annoyed (as it saves her time, which she can spend with other patients - some of whom she IS able to help).

    I would also consider paying for a private consultation/diagnosis. Financially I can't afford to go private all the time - but I find that the NHS is poor at diagnosis, so if I can then I get that part done privately & then take the report/letter back to the NHS for treatment. It also means that the NHS consultants know that I'm not going to be fobbed off - and they respect me more for doing this. They no longer treat me as if I am stupid, or a neurotic mother.

    Of course if the treatment is dietary then I can do it myself/talk to dietician etc.

    Whatever the "professionals" say, you know your child best xxx

  • thank you for replying,i have 5 children, my eldest is also on the autism spectrum, i did indeed have a huge fight to get him diagnosed, same with my youngest son, and his coeliac diagnosis, i was fobbed off by various gps saying anything ranging from constipation, to over use of fibre in his diet, eventually a locum refered him, and within weeks he had blood test, followed quickly by endoscopy/ biopsy,which ended with diagnosis. i am not in a financial position to go private unfortunatly, but will go ahead and phone dietitian on monday, tried yesterday but they were all busy, xx

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