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Thanks to this website and the extensive experience of all of you, I have gained enough knowledge to know that the 10 mg. prescribed was going to contribute to the yo yo effect we were getting. I gave him 8 mg. instead on Monday night, checked INR Tuesday afternoon and it was 2.4 so we are...

I took Idrees to the lab and they got 1.3 so I guess there is nothing wrong with the meter. The Dr's instructions for tonight were to give him 10mg. His typical dose is 6 mg. 4x/week and 4 mg. 3x/week. He was going too low on on that so they up'd it to 6 mg. x4 and 5 mg. x3. He then shot up...

So I just tested him and got 1.6 Normally I give him his ACT at night before bed. Should I give it to him now (morning) instead?

Dick, I'm glad that you mentioned about the #'s going above 4 and getting wacky. the tech I spoke to didn't mention that at all. That would make some sense then as to how I could get #'s ranging from 6-9. He didn't get any ACT for the past 2 nights and I'm going to check him this morning to...

Unfortunately non of the Ped. Card. clinics have in office INR monitoring. I would have to go to the lab to try to calibrate my machine against their results. I've called some adult clinics but they won't even touch a kid. I had switched to Warfarin but when the Dr. changed the dose to 5 I...

Hi All! It's been awhile since I've been on the site as things have been going well and I was starting to feel like a "normal" mom...LOL anyway, Idrees' INR has been unstable for a few weeks. This week it was downright scary. On Monday, INR was 4.3 so dosage was lowered by 2 mg. total/week...

I can certainly understand your anger and frustration.....facing a surgery like this is no walk in the park. I just wanted to comment on the issue of your choices and tell you our experience. My son has both a tissue and mechanical valve and in our case, the tissue has been much more trouble...

Best wishes to you all for the upcoming surgery. I can completely relate to how you feel as you get closer to the date. I have been there and remember all too well the anxiety and fear. The key is not letting your kids see it...hard to do, I know. Hang in there! We will all be thinking of...

So sorry to hear about the effusion. My child has had them a couple of times. The first was a result of a lymphatic leak when his heart was in bad shape. It was drained (2 L.) in a kid who weighed less than 40 lbs. at the time. We severely restricted fat in his diet and it was monitored for...

I have a child who takes Warfarin and we typically check every 2 weeks if he has been stable for at least a month. By the way, we did get the INR home monitor covered through insurance. If you haven't yet, have your cardiologist write a letter. I'm not sure how the insurance companies look at...

Hello Bridget, My 7 year old son also has a CHD (transitional AV canal and pulmonary stenosis). His initial surgery to repair the AV canal and attempt to open the PS was performed at 10 mos. His PV was very malformed and needed to be removed. The thought at the time was that he would do OK...

Hi there! I'm mom to one of the younger VR members. My son was diagnosed at birth with valve defects, had initial surgery at 10 mos., mitral and pulmonary valve replacement at 4 and subsequent pulmonary valve replacement at 6. This mitral valve issue may be something that you were born with...

Thanks for the replies! I ended up calling the pharmacist who told me that a study indicated that regular users of Tylenol (daily and several times a day) may be more at risk for bleeding while on Warfarin. He thought that occasional use of Tylenol in small doses would not likely be risky...

When my child began taking Coumadin/Warfarin, I was told by all of the medical professionals that we must avoid Ibuprofen (Motrin) and that Tylenol was the only safe med. for pain relief/fever reduction. Yesterday I received Idrees' Warfarin in the mail and in the package was an insert warning...

My son went through a homograft very quickly too (less than 9 mos. it was more stenotic than it had been at placement). He ended up with a bioprosthetic (Hancock II) that is working out so far. Best wishes to you!

Glad to hear that all is well. Enjoy this!

Welcome Becca and Gabe, I'm a heart mom too. My child is 7 and has had 3 OHS so far. The last one was last summer when he was almost 7 years old. I remember everything vividly about the preparation, dealing with the procedures, etc...so when you get closer, let me know and I'll tell you what...

I am trying to order testing strips and lancets for my son's ProTime monitor. QAS has been my supplier, however, they seem to have merged with another company, Alere and I am having problems getting my order in. They have a order messaging system as opposed to talking to a real person. They...

Best Wishes Luke! I believe that the waiting is one of the toughest parts. Just wanted to say that I wish you the best and hope for an uneventful surgery and smooth recovery.

My son's Cardiologist (Pediatric) recommends and is a patient of Carl Bon Tempo with Northern Virginia Cardiology Associates 8505 Arlington Blvd 200 Fairfax, VA 22031 Phone (703) 698-8525 Fax (703) 849-1918