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PSD testing for 7 yr old pre surgery?


katybops

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Hey James or anyone else that might know the answer to this :)

My 7 yr old son Harry is about to have a cardiac ablation procedure. It's a 5 hour general anaesthesia and the consultant was explaining that while they treat the left side of the heart small clots form around the 'thing' (sorry, not tech enough here) which will usually disperse without issue but if they treat the right side they'll anti coagulate because the clots are more potentially threatening.

I mentioned that I have Protein S Deficiency and that we don't know if Harry has it, so he's referred us to a Hematologist prior to having this surgery done. It's my limited understanding that PSD testing in a kid his age isn't necessarily going to be reliable so I'm a little nervous.

If they test him he might show negative even though he has it? Is he at more risk of clotting in that case?

And If he does have PSD at 7 does this mean he won't have the same dramatic clotting issues that an adult has?

Yours nervously

Katie x

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Wow is Harry seven already - how time flies! I hope everything goes well for him.

There are two things that I think are relevant... firstly that the main risk age for PSD is late teens and onwards. Secondly there is a difference in the clotting mechanisms for fast moving arterial clots compared to slower moving venous clots. People with PSD should be concerned with venous clots, e.g DVT.

I'm guessing your consultant is referring to small clots that form around the edges of a stent, and because they are 'downstream' they aren't so concerned about the impact this causes. This is obviously a stressful time but I suppose we also have to remember that clotting is normal and desirable for all of us in the right places and right times, and as long as it's not going to block something up then the body will just naturally reabsorb it.

Best wishes to you and the family

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Thank you SO much James... best wishes to you and yours too xx We are seeing the Hematology dept at Childrens Hospital on Tuesday so I guess we'll talk to them more about whether they will bother testing him etc. Scary times X

Wow is Harry seven already - how time flies! I hope everything goes well for him.

There are two things that I think are relevant... firstly that the main risk age for PSD is late teens and onwards. Secondly there is a difference in the clotting mechanisms for fast moving arterial clots compared to slower moving venous clots. People with PSD should be concerned with venous clots, e.g DVT.

I'm guessing your consultant is referring to small clots that form around the edges of a stent, and because they are 'downstream' they aren't so concerned about the impact this causes. This is obviously a stressful time but I suppose we also have to remember that clotting is normal and desirable for all of us in the right places and right times, and as long as it's not going to block something up then the body will just naturally reabsorb it.

Best wishes to you and the family

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Just a quick update in case anyone is interested. The DR (first a fellow and later a consultant) at Seattle Childrens Hospital both wanted him tested for PSD and said that the test should show conclusively whether he has it by now (7). They say if he does have it, given the length of the surgery (5 hours) they will recommend anticoagulating during but not before or after.

*fingers crossed for a negative result*

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  • 2 weeks later...

It may not be this way for ever. I thought all kids had lower than adult protein s anyway? How many kids do they test?

If the end result is more cautious treatment after his operation which will ensure he doesn't get any clots at all then that is a good thing for now but I'd be hoping that as he gets older he's still got a 50/50 of not ending up with it by his 20s.

I hope everything goes smoothly and he recovers well. Sending your child into surgery is never nice and five hours is a long time to wait for news. I'll be thinking of you.

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It may not be this way for ever. I thought all kids had lower than adult protein s anyway? How many kids do they test?

If the end result is more cautious treatment after his operation which will ensure he doesn't get any clots at all then that is a good thing for now but I'd be hoping that as he gets older he's still got a 50/50 of not ending up with it by his 20s.

I hope everything goes smoothly and he recovers well. Sending your child into surgery is never nice and five hours is a long time to wait for news. I'll be thinking of you.

I don't know the answers - I was quite dubious as to whether this was going to be accurate and they were insistent that it was. He is heterozygous for PSD (i.e. just has the gene from me not from his dad), and his levels were about 29 and 29.... mine were 11 and 15 so they are higher than mine were when I got tested... but still below normal range. With the genetic testing done is it likely he'll 'grow out of it' ?

Hopefully the heparin will reduce clot risk.

Thanks for your good wishes xxxxx

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  • 1 month later...

Just thought I'd let you all know that Harry underwent surgery without complications. Unfortunately it wasn't successful as the cause of the SVT he's been suffering was found to be something a little more complicated and they were unable to ablate that area safely. Also since the surgery he's been having more episodes. We see the surgeon again in 3 or 4 weeks to discuss further options.

Re the PSD, he tested for the genetic mutation so I guess that is a definitive answer that he has PSD. He is heterozygous for it - meaning he only inherited it from me, not his dad (who as far as we know does not have it). He was anticoagulated during surgery as a precaution and thankfully it was not a problem.

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Hi Katy

It's good that they took care of his clotting risk during surgery but it's bad that it didn't fix the problem. I hope you find a surgeon with a plan B and things get better for Harry soon. My sister is now 35 and still hasn't had a clot despite being hetero for PSD just like me. Harry has the same chance of never having any problems as she does so here's hoping that he is lucky too.

Rachel

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