Vent!!!!

[sarahsunshine]

Every since Skyler has had surgery we have been having a terrible time trying to stabilize his INR. We have been on a self management program for over 6 years (DH, me and Skyler) and are very used to the particulars of how Skyler and INR react. Pre-surgery, we could pretty much guess exactly what his INR would be based on accidental missed doses, activity and diet. It's been a whole new ball-game post surgery.

We put him back on his pre-surgery dose and his INR has dropped by at least a full point (8/8.5mg alternating daily). We tried upping it to 10mg for 4 days and it rose immediately and drastically. We put it down to 9.5 and his INR read low (2.1). We've tried 10mg again, and are supposed to test again tonight.

Today, my DH got a phone call from Skyler's Bio-mom (she has had us in courts for the past 4 years trying to get full custody), saying that she just realized that she has accidentally been giving Skyler 2mg pills instead of 4mg pills for the past "couple weeks", and this is probably why his INR has been low. Now I am absolutely livid. Yes, people can make mistakes. I can understand that. But to make that mistake for 2 months while she knows that we have been having a terrible time trying to stabilize his INR? Most of that time his INR has been in the 1.6-1.7 area! This really frustrates me!

And what frustrated me more, likely, is that she is doing everything in her power to show that we are terrible parents and thet Skyler should be under her care only (so far from the truth), and then she goes and does something like this? Of course, she refuses to document any of this in writing and will only talk to DH about it over the phone so there is no written record. ARGH!

Sorry. I hope that this helps Skyler stabilize his INR, however. I'm just a little worried now that giving him 10mg for the past week may have been too much since most of our testing after 1 week happens right after he gets back from his mom's house.

 

[markp66]

Sorry to hear this. But you said u changed the dose when he had an INR of 2.1? DOesnt he have a mech aortic valve? 2.1 is in range and the dose shouldn't change based on that result. I apologise in advance if it's in the mitral position. And skyler has an on x valve right? Ats, carbomedics, st Jude's and on x all have guidelines of 2-3 in aortic position. My range is 2-2.5 as I self monitor and it's easier to keep in a narrow range. Also, does skylers bio mum know the consequences of getting the dose wrong. These pills are clearly labelled and there is no excuse for this! Good luck and hope everything sorts itself out.

 

[sarahsunshine]

Skyler has both and aortic and a mitral valve, along with a graft in the ascending aorta. Yes, they are both On-X. Yes, Skyler's mom knows the consequences, but not likely as much as I do - she thinks she's god's gift to homeopathic/supplements and that she can control everything with those, and really hates being told anything by anyone, especially if she is wrong, so it makes it very difficult to deal with. I'm sure it must have killed her to admit that she messed up, but glad she did.

Even though she's had it explained by 4 different people (INR clinic people - twice, DH, and myself), she refuses to believe that anything would decrease anticoagulation that won't show up in an INR test. The INR clinic even did a presentation showing 13 or 14 different places in the clotting process that could decrease coagulation, and that warfarin only affected (I think it was) 3 of them, and that INR measured a particular place on the pathway.

Since that meeting, however, she has skipped any meetings at the thrombosis clinic saying that "she already knows everything they are going to say".

I'm also glad that he's on low dose aspirin and she hasn't forgotten that... it helps a little.

I also had a talk with Skyler, and we discussed how he could be responsible for making sure he knows that he is getting the right dose as well. Now he knows that he can read the number of mg on each pill and can make sure he's getting the right amount too. Hopefully that cuts down on any issues inter-house.

 

[sarahsunshine]

So we tested Skyler's INR yesterday. It was 1.3 . I'm at a loss and absolutely irate that anyone could be so careless. GRRRRR!

 

[Madsometimes]

This must be so frustrating for all of you.

I agree that the best solution is to ensure that Skyler takes responsibility for taking the prescribed dose, under supervision of course. My dd has a friend with diabetes, and she has taken a lead in her treatment since a very young age. When she came to tea, she would do her own blood test, call her mum for dosing instructions, and then inject herself at age 8.

Obviously Skyler is too young to do his own dosing, but if he is given clear instructions on what dose to take on what day, then perhaps he would have the confidence to challenge his bio mum if she gets it wrong.

 

[AgilityDog]

Oh, sweetie, you may have to go to twice weekly testing on Skylar just because of his mom. And keep a supply of Lovenox on hand, at least until he's a tad bit older. Bless that little boy's heart, literally and figurativley.

 

[Sarah_Louise]

OMG!!!
Hope now the problems been recognised his INR starts to stablize,
Thinking of you all,
Love Sarah xxx

 

[sarahsunshine]

Obviously Skyler is too young to do his own dosing, but if he is given clear instructions on what dose to take on what day, then perhaps he would have the confidence to challenge his bio mum if she gets it wrong.

Yes, Skyler is too young to self-dose with no supervision. Unfortunately, sometimes we are forced to do things that we are really too young for, and I fear that this is one of those for Skyler. Skyler, although he is almost 13, is very emotionally and logically immature. I believe it will come with age and experience, but he has been so sheltered from all experiences (and even his own INR management) that even though through the years I've explained many times that taking wrafarin prevents clotting, it's only in the past 6 months that he has "gotten it". He has also had such complete trust in his mom to "know everything about health" that he will do anything she says. Fortunately for his health, but unfortunately for his relationship with his mother, he has recently started to realize that his mother, shall we put it gently, is trying to sabotage his relationship with his dad and I, and has lied to him frequently and very seriously. This means that he has an increased trust in our parenting in the past several months, and an increase in independent thought and ideas (thank heavens!).

Unfortunately, his mom's history (I'm not getting into detail) is one that does not promote any challenging of any sort or there would be dire emotional consequences (can't say any more but hope you get it). Tough place for a kid to be. He needs to love his mom, every kid does, but he's starting to realize there are many things he can't trust her for, and some of these are things he is realizing that he wrongfully has trusted her for in the past. Poor kid had the rug pulled out from under him, as well as his heart remodellesd in more ways than one these past few months. That - and a whole new school this year, and he's almost 13. That's a rough year for anyone, let alone with all this crud added.

I would not wish this situation on anyone. Good news is, he is holding up spectacularly.

All we can do is be there for him, help him emotionally, help him figure out how to figure things out on his own (so he can do it at his mom's too), and all in all be consistent and NORMAL. I just worry about him cracking under all the pressure. He's not emotionally strong enough for this, but that may be what is saving him. He is partially oblivious.

But I digress....


So last night after giving him his INR test, we gave him another 4mg immediately (he usually takes his dose in the morning). This morning he got 10mg. Tomorrow, I think we are going to go back to 8.5mg, and keep that steady for the week. Then test again on Thursday. I hope that now that his mom realized the mistake, that it should be stable where it should be. On the other hand, it's entirely possible that his INR has been fluctuating as well as getting the wrong dose, that just makes things that much harder.

And yes, I agree, it looks like we need to start testing both when he gets home from his mom's, and before he leaves. That gives us a week, at least, to detrmine whether the dose we're giving him works while he's at our house.

 

[markp66]

1.3! That is probably what normal people's INR is! Until his INR is in range he needs heparin (maybe this is called something else in America). I say this because then u can gradually get his INR in range which is much safer. Sounds like his mum hasnt been giving him any warfarin! Can't something like this be reported!?? This is his life we are talking about. Good luck and hope his INR gets back to normal soon. It's Also v important it doesn't go too high which can happen if you are trying to increase INR quickly. And you say he is emotionally immature. For a 13 year old to have a double valve replacement and be dealing with everything is pretty amazing and mature in itself. U must b very proud of skyler.

 

[sarahsunshine]

Yes, we are very proud of Skyler. He's a great kid in a situation he should never have to deal with. But then, everyone has things they shouldn't have to deal with, he just got some stuck on him earlier than most.

As for reporting it... I have no idea where to start other than the INR clinic.