Barry and Barbara Duff would like your advice

Barry and Barbara Duff are having problems coping with some recent symptoms their son, Craig, is currently having.

He has symptomatic ALD and adrenal insufficiency and has recently been experiencing more seizures than normal, sudden temperature changes from very cold to very hot and sleeping excessively. Infection is unlikely and his adrenal levels are thought to be fine.

If anyone has had similar experiences, please feel free to share them below.

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3 Replies

  • Seizures: Have your neurologist check the boy for that. Eoryh undergoes Phenobarbital assay and Serum electrolytes for the doctors to know if he is likely to have seizures. It's a test to find out if his anti-seizure meds need to be adjusted to prevent his seizures.

    Sleeping excessively: Eoryh has this habit too. In this case, neuro asks us to have EEG to check on him. But when he had enough sleep, he can't be forced to sleep on the the other hand. He will remain awake whenever he wants to. His sleeping patterns are like of a baby-- graveyard shift, awake during the day or when he wants to.

    Sudden temperature changes: Eoryh's worst dilemma nowadays is when his head perspires a lot while his body from neck to feet is dry. It just happens, I don't know why. But maybe because he has too much pain somewhere within his body which I'm not sure of since he cannot talk < :( > ... I'm planning to buy him a magic towel though, I hope it can lessen his dilemma.

  • Thanks for sharing your experience with us Hanika. I am really sorry to read about Hanika's health problems.

  • It's ok. I'm always trying my best to help Eoryh manage. Eoryh has been a lot calmer than ever after PEG Insertion. Thank you so much. You're heaven sent.

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