Very confused mum of 5 year old has he got addisons?

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Hi, I have been told that my son has very low cortosol levels and needs one 5mg tablet of hydracortasol for 2 day for times when he is unwell and if he is in a accident or is extremly unwell to give him emergency hydrocortasole injection asap. I have been shown how to use the injection and thank god I have never had to use it (touch wood)

When my son gets a common cold or a minor infection all hell breack lose we were being given hydrocortasol liquid that take 3 days to be made up by the chemist and the self life is only a month this means that i have to predict when my son was going to be unwell or it would be a trip to the a&e departemnt for a emergency prescription I have now been give hydrocortasol pellets that can be put in food or drink but if he is unwell he will not eat or drink. The consultant at the hospital has not given me much information she is either on leave or they can not find his

hospital notes. has he got addison diease? is this forever and does it get worse. i need some striaght forward information and does anyone else have a younge child in the same circumstance?

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  • Posted

    hi i have a forteen year old son who has marfans syndrome he has been unwell for over two years now and keeps having episodes that we thought where down to his heart but we have now found out that he may have addisons he has all off the symptons and we can not believe it has taken the docs this long to find this out he has the main test in a week i would love to know more and how to cope i wish you luck
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    Hi Sara

    My Grandson had all the symptoms of Addissons Disease and he was never diagnosed with it and he passed away suddenly in his sleep he was 4 years of age. No one in Australia had ever heard of a child his age even getting this illness, so all my daughter wants to get across to people please please make sure you get the Doctors to do the tests as Addissons is treatable.

    Debbie

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  • Posted

    Hi Sara,

    My mum died suddenly nearly 3 years ago aged 49. She had been generally ill for a couple of years and doctors put it down to various things including her thyroid. Her death certificate (after PM) however stated she had died of addisons. This was the first time we had ever heard of it and makes us so mad that this it is treatable. Please keep pushing doctors to get the answers you require. Best of luck!!!

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  • Posted

    Hi

    My brother collapsed and died sadly in 1986 at the age 22. We couldn't have his funeral for over two weeks because they couldn't ascertain what had caused his sudden death.

    It turns out he had Addisons and at the time we were told that it was a disease that you didn't know you had until you died of it! Having read about it over the years we have found out that this is clearly not the case and we are sickened and greatly saddened to discover that it is a treatable condition and our brother need not have died.

    He had been under the doctor for delayed puberty and was on hormone injections, so our GP was fully aware of his symptoms and problems. He even spent a week in hospital having loads of tests. All they found out at the time was that he was deficient in Vitamin B12. We still cannot understand why this week spent in hospital did not uncover the problem.

    It may be over 20 years ago since his death but the knowledge that he could have been treated and lived is difficult to deal with.

    Having found this forum I just wanted to encourage anyone to push their doctors to check all avenues so that no-one needs to die needlessly of this condition.

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