What is Hemophilia
Hemophilia or haemophilia is the name of any of several hereditary genetic illnesses that impair the body's ability to control bleeding. Genetic deficiencies (or, very rarely, an a...
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The First Bleed
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Hey Everyone,
Just wanted to give you an update about our little Logan. Last weekend we experienced his first bleed. We had a check up last Friday with the Hematologist. He was very impressed that Logan was crawling at 7 months and did not have many bruises. He then decided to order some blood work to see if his levels had improved. Of course, this made my husband and I so excited. Could there be a possiblity that he might no longer be severe?? Unfortunately, the nurses were not able to find a vein very easily. They had to dig and dig until finally they found one. Well, as I am sure most of you guessed it....he got a bad muscle bleed. We were in the docs office the next day receiving his first factor treatment. I then realized that Logan's blood count probably did not improve and I was right. He is still severe. Our doc said that Logan is big enough (almost 22 lbs at 7 months) to go ahead and get the port and start the infusions. Any advice out there??? Should we wait until he is walking or should we go ahead and start now? Logan is crawling and pulling up to a standing position...he amazes us all. So, he is definitely mobile. Any words of wisdom would be greatly appreciated. Posted on 08/15/09, 09:08 am |
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I assume he is already getting infusions when he gets bleeds. Do you mean that you are about to start prophylaxis? If so, you could probably wait until he starts walking, but if your doctor has a good reason to want to start now it wouldn't hurt.
Is it standard procedure these days for children to get a port? I never did have one. My parents always just found a vein until I got old enough to do it myself. Of course, having the port makes it more convenient to infuse often, and probably makes you less likely to skip days if you're doing prophylaxis. 
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Thank you for the reply.
Since Logan is so active, we had the port surgery on Thurs. He did very well and is slowing coming back to his old happy self. We are excited about starting the prophy b/c it is going to give us so much peace of mind. He is so close to walking and has had several head bumps. One thing we learned was there is much more that goes into a port....in terms of maintenance. I know understand why people try to access a vein, however, Logan's veins are so small and hard for professionals to find---that is why he got a bleed. So the port was the way to go. We also wanted to start early to lower the chances of an inhibitor. They say the sooner it gets into the system the better.
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hi I think I may have pressed the wrong key when I sent you a message of support as I don't see it there, so here goes second time around. I understand well what you are experiencing as I am the mother of a severely hemophilic soncheck out my home page) I too thought my son's factor level might change after he was diagnosed but soon realised that he would remain severe for life. However, on the bright side treatment is so effective and,despite the worrying moments, when your beautiful son grows into an amazing young man who lives life to the full - like my Nathan you will already have long realised that hemophillia is no bar to a full, active life. I wish you well. Enjoy your beautiful baby, he is a tremendous source of joy.
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