Heparin

My 22 month old son is having his leads and generator replaced next week. The atrial lead is fractured and the ventrical lead is getting perilously short due to growth. We recently received notice that the CT surgeon is participating in a study evaluating the use of the blood thinning drug Heparin. I am reluctant to allow my son to be part of the study and receive this drug - largely due to the rash of deaths from complications induced by this drug (now known to be from a contaminated batch), and other problems that I read about when I google it. Does anyone here know more about it? Thank you so much!

8 Comments

My son too

by clichtenberg - 2008-05-29 11:05:22

I've spoken with you before. I'm sorry I don't know much about the medication. Except that I know that it is used a lot.

My son's last ep appointment showed that there is probably scaring on the lead. But she thinks he is only being paced when he is sleeping so she lowered his rate. We go back at the end of July. If she is right he won't have been paced as much. The next step will be to turn it down even lower to 60bpm. And send us home with a monitor. Or, I guess they would schedule surgery to replace the wires and generator. He is almost 21 months. He got his at 10weeks. Our kids are close in age, they never even suggested that his wires would be out grown by now. I thought it would be until they are older like 3-4.

Please let us know how things go with the surgery.

Cindy

Heparin

by SMITTY - 2008-05-29 11:05:56

Hello,

I've had heparin several times, the last about but 3 months ago when I had a couple of stents implanted. It is a potent blood thinner and is used to prevent blood clots from forming. It is a such potent blood thinner that so far as I know it used only while the patient is confined to hospital at least in a tightly controlled environment.

But be all that as it may, there is no comparison between me and your 22 month old son. Frankly if it were me there is no way my 22 month old child would participate[ate in such study, even if he was totally healthy. In the case of your son, what happens if he is say half way through the study and one or both leads have to be replaced as an emergency. Doctors do not like to do surgery on grownups when thet are on any kind of blood thinner, and I would imagine one would go to great lengths to avoid doing surgery on a small child that was on heparin.

Normally I will only make suggestions to people that ask questions here, but your situation is the exception. I recommend that you tell the good doctor thanks but no thanks unless he can prove to you the risk from not participating is greater than being a participant.

I wish your son the best,

Smitty

Avoid it if possible

by ElectricFrank - 2008-05-30 01:05:37

Unless your son has a very urgent reason for a blood thinner I would avoid the heparin. It seems to be routinely used even when there is not real reason for it.

I had a battle with them after my implant. They wanted to leave an IV attachment in my arm in case they needed it and were going to inject heparin to keep it from clotting over. I said no and requested the attachment be removed. After I threatened to remove it myself they took it out. The bottom line is I wasn't going to subject my body to heparin and it's possible side effects if it wasn't urgently needed.

frank

SAY NO

by peter - 2008-05-30 03:05:50

Whatever next, experimenting on a helpless baby. Heparin is not without risks, I had over 100 heparin injections in hospital and I am now left with the additional complication of thrombocytopenia. Type in heparin and thrombocytopenia in google. I have had this for over 500 days now. They should play safe with a baby and give no more than aspirin. Give him a big cuddle. Cheers Peter

blood thinners & children

by aldeer - 2008-05-30 06:05:36

As a mother on ten children and as someone who came very, very close to dying (while on Coumadin a blood thinner) because of a bad fall, these are my thoughts. Little children, especially little boys, are always playing hard and falling lots. Unless it is absolutely essential to save his life, I would not even consider putting him in a study of this sort. I am not trying to frighten you but just want to be certain you realize the danger of the blood thinners. Because I may possibly have ventricle tachycardia, I have been taken off the blood thinner even tho I am in afib all the time and at high risk of stroke. As a mother, I am sure you will make the right decision.
Wishing you the best of luck. With prayers, aldeer

Heparin

by maryanne - 2008-05-30 12:05:14

Heparin is a very widely used drug, both in the prevention of post operative clots and prevention of clots in cardiac patients.

I have seen heparin used IV and subcutaneously. The IV route is generally used for someone who has a DVT(deep vein thrombosis). Subcutaneous route is used as provention when someone is immobilized for a period of time or as I said it is being used prophylacticly for cardiac patients to prevent clots.

Not knowing what the purpose of the study is all about I would be hesitant to enroll my child unless I knew exactly what the purpose is and what are the risks. Of course you must have read that with heparin you run the risk of bleeding and thrombocytopenia as the doctor about these risks...only then make your decision.

Good luck to you and your child....please keep us posted...

Heparin

by Blueaustralia - 2008-05-30 12:05:42

Take care of that precious Bubby. There is no way I would let my bub be part of a study. Sounds like you both have enough to cope with. Take care and all the best to both of you.

Thanks!

by slarnerd - 2008-06-01 12:06:10

Thank you so much for your replies! I believe, barring something totally unforeseen, we will decline to participate. Like some of you suggested, we just don;t have sufficient info to make an advance decision and there certainly seem to be too many risks with no persuasive known benefits. You are all so knowledgable and are always able to give me level perspective and personal experience. I appreciate that.

Cindy - my son got his pacer at 1 day old and he was also premature, so was only 4 1/2 lbs at the time, 17 inches long. They are able to leave more slack in an older infant/newborn - even at 10 weeks. This is b/c the growth rate during the first year is so tremendous. Also, there would still be slack in my son's leads except that slack is trapped or caught in scar tissue - maybe created from another operation he had at 6 weeks of age for an incisional hernia (where his abdominal muscle didn't close with stitches after his pacer operation and began to strangle his intestines). We thought we would get my son to at least age 2.5 before we'd have to replace the battery and leads too. he is 100% dependant on the pacer with an average hr of 47. I hope your son continues to do very well!!!

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