Hi, my name is Alisha. I’m a 33 year old carrier of ALD. My family found out about this disease when my brother Gary(Pine_Knot on here) started having major symptoms! Unfortunately he passed away from this horrible disease in May of this year at the young age of 35! I also have a 4 year old boy who my brother always said was his special little buddy! They had a lot in common being as they had the same disease and both had addisons too. At 4 Barrett has a MRI every 6 months and all have been good so far! Thank God!! For myself I’m not really showing any major symptoms just a little numbness in my toes.
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Leukodystrophy Support
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Leelee85
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Hi Alisha, I am so sorry to hear the devastating news of your brother and my thoughts are with you and your family. I am glad to hear that your younger brother is doing well and is having his regular MRI scans. Are you in the UK? I am the Support Services manager at ALD Life so please get in touch my email address is karen@aldlife.org
Leelee85 in reply to
The little boy ( Barrett) is actually my son. ☺️ No we are in the US.
Hello Alisha, I’m terribly sorry about your brother and hope your son is doing well. You mention he has Addison’s so I suppose he is taking cortisol replacement/supplement?
My son’s adrenal levels came back abnormal and may be taking hydrocortisone soon, we have an upcoming stim test. I was just curious how your son has fared with Addison’s, does he get sick often, is he lethargic. I just worry about quality of life after reading all the side effect of hydrocortisone and would love to know how it’s been.
Hope to hear back from you.❤️
He is really doing great! Before he started taking hydrocortisone and fludrocortison he was always sick and like most normal kids a 24 hour sickness would be more like a 72 hour sickness for him. He just could not get over little stuff and would run high fevers the whole time. He was 11/2 and I would always find him laying around. We started taking the meds and everything changed. When he gets sick it’s is just normal and he don’t get sick a lot like he used to! He NEVER stops, probably one of the most hyper children I have EVER seen and I have been around lots of children! Lol I am really faithful with making sure he gets his meds and giving stress doses when needed! Once he does go to sleep he sleeps for at LEAST 12 hours and I have to wake him up. I think he has a hard time getting awake. My brother always told me he had a really hard time getting awake. How old is your son?
It sounds like being on the medication is really a blessing and I’m so glad he is doing well.
My son just turned 1 in October.
I hope everything goes ok with him! I will tell you the hydrocortisone is really horrible tasting. It’s extremely bitter. They don’t offer in a liquid so when he was little I would have to crush it up. I tried mixing with several things and chocolate syrup worked the best! I would mix in a spoon and suck it up in a syringe! The spoon worked best cause if I used anything else I would seem to mix to much. He always took medicine really good so I was lucky I didn’t have to fight him every time(3 times a day)! I started working on him really young trying to teach him how to swallow the pill and he finally got. He’s a pro at it now!
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