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Link between Hypermobility and Heart murmour?(3 Posts)
I touched on this on my original thread about DD not weight bearing.
Since then the paediatrician has assessed Hypermobility in DD who is almost 17 months.
I have to say, since her assessment a week ago, DD has made some remarkable achievements and has pulled herself to sort of stand from sitting on the floor at the base of the stairs. She can't pull herself up using anything higher such as the sofa or coffee table, but this is miles ahead of where she was a few weeks ago. She has also rolled from back to front with the aid of a cushioned base and some sides to push against! She is also trying to crawl but has yet to master that.
Anyway, we will have a full physio assessment in Jan or Feb but we've also been referred for a heart scan as she has had a murmour detected several times in utero and since birth.
We are mildly concerned by this but the paediatrican says it is just a precaution given the hypermobility, but probably not linked.
We are also having her bloods tested for some enzyme (I think) again related to hypermobility.
Does anyone have any suggestions what angle the paediatrican is taking on this other than a cautious one?! What might the link be between all the things she is checking?
I thought Marfan syndrome might be a possibility but then I am a woried parent...
She is probably checking up for Marfan's just as a precaution. They did it with dd when she was first diagnosed with hypermobility syndrome, it's probably standard practice. This doesn't mean they think your dd's heart murmur is a sign of Marfan's- there are all sorts of benign heart murmurs that children can have that don't mean anything- just that they want to cover all possible angles.
Mitral valve floppyness, which can cause murmours are not that uncommon in hypermobility patients. The blood test the doctor is referring to could well be to rule out Ehlers Danlos Vascular type, which causes some joint hypermobility as well as vascular related issues. Don't panic, they are just ruling out other issues, before they can officially decide it is hypermobility. Benign joint Hypermobilty (BJHS) and Ehlers Danlos Syndrome Hypermobile Type can both only be diagnosed by clinical investigation, or differential diagnosis, which means by physically examining the patient, recording the scale of joint hypermobility and ruling out other conditions, including Marfans.
My ds and I have EDS hypermobile type, I have floppy heart valves, neurally mediated hypotenson, asthma, poor wound healing, easy bruising, pericarditis and migraines too, all related to my EDS. I have been scanned many times to check me for more cardiac issues, but have always eventually been cleared. It is just part of a process, they are being thorough. If I can help answer any of your questions, please just ask, there are a few others on the children's special needs eds and hypermobility thread who have a lot of knowledge and are at various stages of dx and management for their dc, to be honest the mums often know more than the drs . Hope that helps.
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