Hemophilia Support Group

ive had factor 12 since ive been born. they found out because it took me longer to stop bleeding from the umbilical chord. honestly for me. i really dnt worryy. i bruse a tad but more. but thats because i play football. and for me it takes me a like a few more minutes to stop bleeding but thats from decent cuts like acidentally getting cut. but for factor 12, u will have to be careful, and it tends to get not as bad ass u get older. i was born with factor 9 . but then i lost it and became a factor 12. so just be careful and expect to have like alot of gause and tape instead of bandaids and actually i was born on 1 10 93. and congrats on your 1st

how are you guys doing? we've been at this for 15 years. There are things you won't learn from the medical people. I've had to learn a lot on my on and would be glad to share with you. 1)don't take any crap from ER docs. I had one threaten to call security on me. When I and Children's hospital got finished with him, he was very humble. I also fired a hemotologists - yes you can do that. Dr's think their God's. Let them go up against a mad mother. Bet he never forgets that day. My son is my life. Hug your baby for me. vickie

Hi alabamamom my son was born 3/12/09 he was diagnosed with hemophelia A also a few days after he was born. I just wanted to know how things are going for you? Your son is a fewmonths older than mine and i know everyones experiences are different. I am also having trouble trying to treat him like a normal child just because we had alot of problems at the beginning and I just am trying to keep my mind on track i mean as you know its alot to take in well i hope to hear back from you.

Hey guys Logan is doing AWESOME! No bleeds yet so we are happy about that. We were blessed with such an amazing child, I've never seen a baby this happy and easy to deal with before in my life.

We've reached our 2nd major challenge Rolling over in his sleep, he never stops moving. Our hematologist told us to remove our bumper pads and that he should be fine if he's running into the crib, so we removed them, but I just got done putting them back on because I get nervous. We also just got Logan a exersaucer, originally our hematologist said that he couldn't have one because when his feet would hit the hard surface it could cause joint bleeds, but we asked if we put egg crate padding on the bottom of it to cushion his feet if that would help, he told us that would help and it's a great idea so we put a load of padding on there probably 6-9 inches tall and he LOVES his new exersaucer.
Thanks to everyone that replied to our post we'll keep in touch.
Dan and Lindsay

Hi,How's your son ?

What severity of Haemophilia doe's your son have ?

Our son Logan has severe Hemophilia A. His factor level is 1%. However, all the literature I have read places Logan in the moderate range (1%-5%).
We heard that it is possible for the level of factor to change as a child gets older. Has anyone experienced this? Our son was bleeding from a circ. a day before they tested his blood. I am just wondering if his % is higher due to his factor level being depleted. We are just hoping that has increased some.

Hi,My level is 2%.

I know it is probably difficult for you at the moment...but try not to worry,too much.

I've led a very active life and am married with 3 children of my own.

My diagnosis was at the age of 7.I had to have a tooth extraction.

What ever you do...don't let any guilt on your part, rule your decision making in bringing up your son.

Try not to spoil him too much....it's easy to do.

Contact me at any time.... as I regularily check this site.

Best regard's,

Wow, it is hard to believe that you were 7 when you were first diagnosed. Did your levels ever improve? Are you considered moderate? What types of bleeds did you have growing up?
My husband and I are really enjoying this time (he is 6 months old) but that is b/c we really haven't seen Hemophilia.
Any advice would be helpful..

HI,How are you and your son ?

Technically I'm moderate, due to the way it's measured.

Although,my Physiotherapist/one Doctor has said that due to the way it is measured..take the safer route and keep in mind that I'm boardering on "severe".

It's strange really...I can remember specific bleed's when growing up.

The major problems were with my left knee and right ankle.

Probably due to the fact that I played "Soccer"LOL.

It's very important that you ensure your son stay's physically fit...i'e. Muscle tone etc etc.Also,don't allow too much weight on your son...give him a healthy diet...early.

With every bleed...specifically into a joint...the cartlidge start's to weaken or wear away.

By the way...I'm 50 year's of age and still fairly fit ...I think..LOL !

As I've said previously....don't heitate to contact me with any question's....the Doc's are not alway's correct.

Regard's

I just turned 28 yesterday and my son is about 6 months old. Thank you for your words of wisdom. I am looking for as many positive thoughts as I can get. At this point, my son is extremely strong...which I hope will be a good thing for him. He is just getting ready to crawl, which of course scares me. When he was small, he was safe in my arm and we didn't have to worry much. Know he is entering a very mobile stage and we have to get prepared. We love your two docs but I like to hear from people that are living with the diagnosis. You have way more insight. I am praying and hoping that Logan's factor % might improve some. He was bleeding for an entire day before they tested his factor levels. My doc agrees that he might have depleted his factor by the bleeding he was having. I would love to see him in the moderate level. However, like I said before most of the research places him at the moderate level (1%-5%). So who knows....
My husband tells me I need to accept him as a severe and move on. I don't want to get my hopes up :(