Younger kids/babies harder to manage INR?

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A

Amelia_mom

My daughter Amelia has a St Jude mitral valve and she is just 3 months old weighing 3.8kg. Her surgery was done on 17 Dec 05. The doctor are still figuring out what is her dosage of warfarin as it swings from 1.5 to over 3 and at times 4! Yesterday before one of her milk feeds, there was some streaks of blood drawn from her stomach with some undigested milk. And her INR was 3.24.

Her dosage of warfarin is already very low - 0.3 to 0.5 but a 0.1 can really swing her INR. She is currently on expressed breast milk so I wonder how much my diet affects her vit K? I eat a lot of greens and it's all local veggetable (we're from Singapore).

We are all so confused at this. The physican admits he has absolute NO experience with such a small baby. So I am at a total loss - and as a mom I am even more guilty because I am the ""milk producer"! :(

I do agree that there is a hugh risk of blood clots if INR drops below 2 but she is so young and small and delicate, will she be MORE at risk for bleeding is it gets beyond her range? also is it harder for Asians to get the INR within range? She is still being tested everday and twice if it is way out. The doctor did mention that they will let us bring a home test kit.
 
What is Amelia's range? I wonder if 4 is very far out of range.

I have no experience with children (for which I'm very thankful); but you need to know what her range is in order to be able to judge what's really bad and what isn't.

I suggest you send a personal message to Al Lodwick with your questions. If he doesn't know all the answers, I'll bet he can get you to someone who does.

If Vit K is in your breast milk, then you simply have to be very consistent in your diet, so Amelia's inr will become stable.

In an adult, a high inr does not increase the chance of a stroke from clots; however, it does increase the chance of a hemorrhagic stroke. But with adults, the inr readings you've had aren't particularly worrisome. I don't know how this translates to a newborn. You need some expert advice on this.

I'm so sorry you have to deal with this. It's bad enough to have a child with heart problems - a newborn must be terrifying.

Hang in there, and continue to visit with us. I hope someone who's more knowledgeabl than I comes along soon.
 
A-mom,

Relax a little - one of the wonders of the internet is that I can sit here in Colorado USA and help you with your baby. There are several Mom's on here who will also get on soon and be able to help you.

The first and most important thing to know is that you are not guilty!!! You have been presented with a special child. You are going to learn more than you ever thought you would know about helath care. Then you are going to be a resource as other mothers coma along and you are the experienced one.

Please go look at my website and in particular theis page http://warfarinfo.com/pediatrics.htm I have managed several children on warfarin. The youngest has been 5 months but I don't think that a 3 year old will be much different.

The starting dose for a baby is 0.1 mg per kg per day. Since she weighs 3.8 kg you would expect her dose to be about 0.38 mg/day. You said that she takes 0.3 to 0.5 mg daily, so this is just right. The only way to really determine the correct dose is to measure her INR. Dosage adjustments are made from that. They should be in the range of 10 to 15% up or down. So a 10% increase from 0.4 would be 0.56 for her new dose. The problem with little ones is that they don't always take the whole dose and if they do, they tend to spit some of it back up. So what you have to do (and this is very hard for parents and physicians alike) is to pick a dose such as 0.4 mg daily and stick with it for a week. If you try to change it more often, you will have her INR jumping up and down like crazy. It takes about three days for the effect of changing a warfarin dose to show up on the INR. So you must always make warfarin dosage changes based on what Amelia took over the past week. I have done probably 35,000 tests and dosage adjustments for warfarin and I assure you that if you are not patient with dose changes you will NEVER have her INR consistently in range. You may hit it once in a great while but it will not stay there. NOT DOING THIS IS THE BIGGEST MISTAKE THAT PEOPLE MAKE IN DOSING WARFARIN.

No, Asians are not harder to get in range than anyone else. The dose of warfarin is not based on body weight but it does play a factor. If I see a 40 Kg grandma and she is taking 10 mg of warfarin daily, then I know that something is unusual. Likewise there are variations in the enzymes in the liver that metabolize warfarin. Asians tend to have a variation that causes them to metabolize warfarin more slowly, but this only means that they usually need a slightly smaller warfarin dose than a non-Asian of the same weight. It is not particularly harder to manage Asians. Children of Amelia's age do not have fully developed livers (as far as enzyme production is concerned) so this will cause her dose to change as she grows,

I do not get particularly concerned about INRs of 4 if the person is not bleeding. I think that one of the worst things you can do for an INR of 4 is to hold a dose. This will cause a precipitous drop in the INR in about three days.
Instead you should give about 1/2 of the past dose for a day and then start a new dose about 10% lower. Almost any bleed is better than almost any clot. You can give more blood cells but you cannot give a new brain. If a clot goes there it is devastating.

Your diet will not affect her INR very much. If you maintain a consistent diet then the amount of vitamin K transmitted in your milk will remain a constant. This is the best thing that you can provide for her. By consistent, I do not mean the same thing day after day, but approximately the same amount of vegetables over the course of a week. Don't get concerned about eating the exact same amount of vitamin K - but be aware if you get an upset stomach and do not feel like eating anything for a day or two because this may be a factor in Amelia's INR being off. You can't feel guilty about this - it is life and everyone's life has to go on. It is just a fact that you will have to deal with.

I CANNOT EMPHASIZE ENOUGH THAT TESTING AS OFTEN AS HERS IS BEING DONE IS NOT ONLY MEANINGLESS IT MAY BE HARMFUL AND CERTAINLY PRODUCES LITTLE BUT ANXIETY.

Please feel free to give my e-mail address [email protected] to your doctor if he/she wants to contact me. I spend 8 hours daily advising patients and physicians on warfarin. I get e-mails from all over the world. Yesterday one was from a doctor in France.

This past year I have trained three pharmacy students from the National University of Singapore in warfarin management. They came here to Colorado.

Please continue to use this site as a resource. You will find the best help in the world here.
 
Thank You Mr Lodwick

Thank You Mr Lodwick

Thank you so much for your reply. I was so distress before and now I feel so much better that there is some hope for my little baby :eek:

Yes, it's better to have a nose bleed than a clot in the brain or even anywhere else.

Today, my elder daughter had some blood on her anus - but I wasn't a bit worried. I guess, we could have over reacted when we see a little bleeding from our warfarin eating baby :eek:

I'll let our doctors know that they can refer to you for your advise. THANK YOU SO MUCH!!!!!! GOD BLESS YOU!
 
Hopefully I can be helpful

Hopefully I can be helpful

Hi Dawn, My name is Lisa. I am the mommy to a now 3 1/2 year old little boy. He had his mitral valve replaced when he was just about the same age as your child. He was born August 15, 2002 and had his replacement on November 1, 2002. We have been through a lot through the past 3 years, and I would be more than happy to share his story with you if you're interested. Keegan had a stroke post surgery which caused him to have seizures, so not only was he on Coumadin but he also came home on Phenobarbitol (for his seizures.) Apparently those 2 drugs work against eachother, so we had a really tough time getting him regulated until after he was done with the Phenobarbitol. His INR is supposed to be between 2.5 and 3.5, and we do regulate and manage him at home. It is USUALLY right within that range...But it does go higher and lower.

Please feel free to contact me if you want to talk.
I don't come to the board often as I work full time and now have a brand new baby added to our family, but you can feel free to contact me by e-mail at any time! My home e-mail is [email protected], or if you want to leave me a private message, I will give you my work e-mail, that I have on all the time. I just don't want to post it on a public forum.

I'm looking forward to chatting with you. :)
 
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