Congenital Hypothyroidism

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i would like to get in contact with otherparents that have had this condition in their newborn child

[i:023194d0af]This message was automatically imported from the original Patient Experience[/i:023194d0af]

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  • Posted

    My daughter was diagnosed in April 2007, three weeks after being born. She is on 50mg of Levothyroxine a day and although her development seems to be unaffected she does seem to be constantly ill with colds and chest infections and her sleep patterns are irratic. Sometimes she wakes every 15-20min at night and although we stick to the sleep rules, don't pick them up, stick to a bedtime routine, go in to settle them every 10-15min, we are still 11 months on still not getting a good nights sleep. Doctors and health vistors don't seem to know if this is connected with her condition and the consultant at the hospital is more than useless. I am constantly tired and irritably and I think it would be so much easier if we had some answers. I do have another daughter and I did not have any of these problems with her. On the other hand am I just finding excuses for her lack of sleep, is it just easier to believe that it is her condition. I feel so frustrated and feel at a complete loss what to do. It would be so useful to hear other peoples experiences of this as we feel complete on our own with regards to the medical profession. It's like she has been diagnosed, prescribed drugs and now they have washed their hands of us.
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  • Posted

    hello my son was born with ch in 2001. we have never encountered any sleep problems with him and he is generally healthy. like you i do find that if he is poorly i automatically assume its because of his ch i would be inclined to say i think you are just a bit unlucky with your daughters sleep patterns i have another child exactly the same . with regards to your frustration over hospitals i agree that they do wash their hands of you when all you want is lots of answers and encouragement i often worry about prognosis but feel they only want to discuss here and now i also decided not to tell the school about it so that i could get an honest opinion about his abilities so far i think he is doing absolutely fine hope this helps
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  • Posted

    [quote:1e60a18745]i also decided not to tell the school about it so that i could get an honest opinion about his abilities so far i think he is doing absolutely fine hope this helps[/quote:1e60a18745]

    Hi there,

    Although I appreciate and understand your choice of not telling your son's school about his condition it can have a knock on affect.

    Staff wouldn't jump to a conclusion that his condition is to blame if any problems appeared now or in the future. However, let's say he isn't quite hearing clearly some days but on other days he is okay, or he becomes clumsy?

    Other children will soon pick up on any clumsiness and your son could end up being stigmatised as the 'clumsy child'.

    His teachers do need to be made aware that at some point he may have hearing difficulties (hopefully he won't) but if he did and the teachers do not know of his condition they could soon start accsing him of being a poor listener, this could land him in trouble with the teachers which at the end of each school year will follow him on to the next year as teachers pass on their records and reports both written and verbally to his next teacher.

    I'd personally think carefully about letting the school know of his condition. even take in some information about it (though most schools will have some knowledge of most conditions if they have the possibilty of affecting a child's learning in any way, shape or form.

    They won't single him out or use his condition as a reason for him not listening (boys will be boys as they get older and love nothing better than to ignore the teacher and have a laugh with their peers) but they will at least keep it in mind and will report any changes in his progress.

    Please don't think I am lecturing you; It is your son and like all parents we make what we think are the best choices for our own children at the time, but please do re-consider your choices about informing his school or not.

    Melbi x

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  • Posted


    My daugter was diagnosed in January 1992, when she was 2 weeks old. She is now 16 1/2 and a normal teenage girl. As a baby there were no differences between her and her brothers, she is slightlly smaller than some of her friends, but not much. She is a very active member of the scout movement, having just completed her silver Duke of Edinburgh, we are awaiting her GCSE results, and we are expecting great things. in short she is no differnt ot anyone else of her age, you wouldn't know there was any thing wrong. Don't treat them any differently, don't wrap them in cotton wool they are perfect children who need no extra care than any other child. My daughter si a very intelligent and confident young lady, and living proof that you can overcome this set back. she is now on 175mcg a day, but i think this will b e increased to 200mcg soon.

    She has started puberty at the same time as her friends, and i will say again there is no differnce between her and girls of the same age.

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  • Posted

    Hi, my daughter is now 16 and was born with this condition (she does not have a thyroid gland). We have not really had any problems with her, she is just like a normal teenager. She has found it difficult retaining information when revising for her exams but do not know whether that is due to her condition. If you want to ask any questions please feel free to do so.
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