ADVICE RATING |
 4.91 (Highly recommend) from 13 votes (796 Visits) |
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Living with factor 7 deficiency ( hemophilia) |
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by Jodie04  (June 2007) (rank 500+) |
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How I found out :
My son Angus (8) had sports day at school. Angus won a couple of races, I was making sure that he had plenty of water as it was a hot day. Then he started complaining about his tummy aching, thinking he had stitch,
I didn't think too much about it. Then later that night he came to me saying that he was weeing blood..So we rang the hospital, they informed us that he may be dehydrated, to give him fluids and monitor him, if it persisted to bring him in. The next morning there was more blood in his urine..
The testing:
So seeing that the blood in his urine was getting worse my husband took him to the hospital, where they performed many tests then re-tested. My husband calls me and tells me that the doctors need to speak to me. So not knowing anything race to the hospital to be asked if anyone in the family has any bleeding disorders, not knowing of any they assume it is a vitamin k deficiency. Well it made no difference. Then they informed us he had a form of hemophilia. I was shocked...Where did it come from? We still don't know. But they said that his life could be normal but just had to watch out for knocks and surgery, that he would bleed a bit more than a normal person..We heard no more, got on with things as usual then....
The reality:
Angus was playing on the swing and he fell off and the foot peg on the see-saw hit him in the eye, he said he couldn't open his eye but it was. Panicked I took him to the local hospital, who after hearing about the factor 7 deficiency sent us to the RBH immediately. He was bleeding in the eye. Then they started the transfusions, which we were more than concerned with. Hearing stories about Aids and hepatitis being transmitted with transfusions, chose non plasma transfusions(recombinant) so lesson the risks. He had these transfusions for about 10 days until they were sure the danger was over. Then they tested all our other children to find that my other 2 boys had it also, and they are so active and rough it was scary at first. Our daughter was negative, thank god as girls have a worse time as they menustrate, which is a whole different scenario.
Our life now:
It has been a few months and we go to the hemophilia clinic for check ups, as you can have joint and coordination problems. The boys have accepted it quite well, they know they can't play the same sports as they used to, but can still play non contact sports.They know where the ice packs are and what to do and watch for if they hurt themselves. We have the R.I.C.E down pat, which is Rest. Ice, Compression and Elevate. Then they compare their bruises lol. But it still taken seriously as they can internally bleed from a hard knock, it makes you want to wrap them up in bubble wrap, but unfortunately you can't. We soldier on with our medical kit on hand.
If you have any questions will gladly answer them......Thanyou for reading my story .... Jodie x
Shelley
