My daughter has had a series of blood tests done recently which stated her ACE was high at 90.3 (normal range is 20-70) I’ve read a lot of information that states it could be sarcoidosis however I’m not sure I agree. My daughter is 6 years old, has a history of turning blue, periodic breathing, episodes of a low heart rate. She has also previous suffered with an immature respiratory system, hypo ventilation, central apnea and GORD (reflux).
Any advice on why her blood test was raised would be greatly appreciated.
Written by
MishC
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I wasn't looking for looking for a qualified answer just if anyone could relate or had experience of anything similar.
She really needs the care of a paediatric respiratory expert. Raised ACE results can be caused by many things including childhood asthma it seems. It is wrong that you have been left to speculate and worry so much. Please insist that she is seen by someone who knows what they are looking at and which other tests need to be done to discover how to help her.
She has a paediatrician and he ordered a repeat blood test which i hope to get the results of ASAP. He didn't give anything away when he told me i had come back high he just said because of what test it is he couldn't ignore it nd would have to retest.
Very wise of him. I.hope that he comes back with some conclusions soon.
As per other replies, my understanding is that ACE can be elevated in many, many conditions, not just sarcoidosis, but that levels in children can also be significantly higher than in adults generally. Clearly, it sounds like your daughter could potentially have some kind of underlying condition, but ACE levels aren’t considered diagnostic for anything in their own right, so even if a repeat test comes back with similar levels of elevation, you still won’t be in a position to say what it is you’re dealing with. It’s always possible that it’s an erroneous reading and further tests will come back within normal, hence why the paediatrician is repeating the test to make sure the levels are persistently abnormal. Further to that, the other caveat I’ve found is that a general paediatrician may interpret and weight specific blood results differently to a paeds specialty. What a generalist considers worrying doesn’t necessarily match up to what a paediatric respiratory consultant finds worrying, for example. On the positive side, though, a further abnormal test would at least give you a pointer towards diagnostic possibilities to explore: I have a 13yo with complex medical needs including a respiratory disease, and know how frustrating it can be to know something’s not right, but struggle to find and get a diagnosis as to what.
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