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DS with mystery illness

2 replies

Stressheadmumma · 09/09/2024 07:46

DS who is 9 has always had ‘episodes’ probably since a baby now we have looked back. He basically feels internally hot all of a sudden then will either vomit or fall asleep. Sometimes we can get him feeling better without being sick by giving him some breadsticks and lying down. It’s varies slightly. He has a tentative diagnosis of cyclic vomiting syndrome and query Dysautonomia. So they aren’t really sure. He is on preventative medication but isn’t really working and having around two episodes a week at the moment. We are going to change medication this week but I still feel we don’t know what is causing it or what it actually is. He can’t explain anymore other than he feels hot. He never has a temperature just the sensation himself. Had MRI and was all fine and blood sugar prick test and that was fine. I have a history of migraine so they say it is linked to migraine but hasn’t developed the headaches yet. I’m really not sure but life is feeling incredibly difficult with dealing with these episodes. Just curious if anyone has suffered similar so we can try and work out what is going on for him and how to make him better.

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Are your children’s vaccines up to date?
OhLookAStrawberry · 09/09/2024 08:22

Has he been seen by a cardiologist? Vasovagal Syncope springs to mind. I have this, it feels like a warm, slight tingling sensation spread throughout my whole body, usually worse in my head and face. I get very dizzy and nauseous, often extremely tired afterwards.

Stressheadmumma · 09/09/2024 10:43

No. I have a diagnosis of POTS so sort of get light headed and I can get nauseas when low blood sugar. I think that’s what they are thinking but I did wonder why he hasn’t seen a cardiologist. Really need to find something that helps. Switching meds to propanalol as per consultants advice but anxious as makes me feel unwell with low blood pressure so I’m worried he may feel the same on it. They are giving him migraine preventatives though and as he initially responded they thought it was cyclic vomiting but it’s all just guess work.

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