To test or not to test?

Eryinera

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OK so during my pdregnancy I got diagnosed with a gene disorder.
The treatment is super simple it's just having blood drained off a few times a year and more frequent blood tests to check levels haven't built up enough to cause harm. Most people don't get diagnosed until 50 or 60 years of age when the condition causes irreparable damage to organs but if managed correctly you live a normal life without issue.
There are a few things to avoid. Some supplements some foods (under cooked shellfish has the potential to kill me so it's a good job all sea food make me sick lol) and there is anecdotal evidence to suggest it's been the cause of my multiple recurrent miscarriages although no full scientific investigation has yet been carried out. But ironic I had to get to 30 weeks pregnant to get it diagnosed!

My question is do I get my children (so happy I finally get to say children not child :love:) tested too. They will get the chance offered to them automatically at 18 so if I opt not only test them they can be tested anyway when they are older. As it's a recessive gene they are both at the very least carriers. My partner would have to be either a carrier or also have the condition for my kids to have it.

Having the knowledge early would allow us to monitor the condition even though most don't have issues until much later in life day way so it probably wouldn't make much difference to them whilst I am responsible for their decisions legally. But it would possibly mean subjecting my kids to multiple blood tests for their entire life.

Im not sure what to do.
 
We've tested our kids early for a couple issues.

My opinion is it's better to know and have appropriate care ASAP than wait and let any potential damage get a chance to start.

But, that's my circus and my monkeys.
 
Thanks hun I'm leaning more towards testing or maybe testing to see if my hubby is a carrier if he's not my kids can't be I'm just waiting for my hospital appointment to start my tests to see if I need to go into maintenance or not.
 
My dad and sister have HSP (hereditary ******* paraplegia), my sisters is much worse and the rest of us are carriers. I don't know if my husband is too (would be bad luck if he was!!) but all the babies born on our side are checked for it. My sister chose to have both her boys given the indepth testing and I would have done the same thing. My sister has been told she'll be in a wheelchair within the next 5 years so I can understand wanting to know what's in store for her boys. She was born with very obvious symptoms though and her boys weren't so we were confident they were okay.

I personally think it's best to know and be prepared as gentle n wild said xx
 
Thanks hun. Sorry to hear of your family's issues. As I say mine thankfully are only problematic later in life if allowed to get out of control as far as I'm aware but obviously you need to know to be able to control it. I have a few issues from it but only a mild inconvenience.
 

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