Worried about Genetics testing.

[missk1989]

Most of DH family on his mums side were born with cataracs. Although Isaac wasn't he has check ups every 6 months to keep an eye on him in case it develops. At his appointment in July DH had to take Lo without me and was asked to take part in some genetic research into Cataracs and whether it can be predicted if lo will develop it.

Our appointment is next friday for the testing and I am a little worried about what is involved. They have give us no information about what we have to do and how they get DNA. I have told DH that if it involves taking blood from lo then I will not allow it. (unless it is a prick like the heel prick newborns have- needles withdrawing blood NO WAY!) I know it will awkward if i pull the plug last minute but as they are giving him check ups twice a year I dont see the benefit in putting him through that and I will not hold my son down whilst they do something that may not benefit him at all.

Has anyone had genetic testing? Can they just take a swab or something? Would you agree to withdrawing blood?

 

[Kanichen34]

Maybe look at it another way, whilst I can understand your reservations and while it may not help your son, the research could help another child. Imagine if you had another child, or a niece or a nephew with cataracts, and the help your son gave helped them. That would make it worth it wouldn't it?

 

[housewifey]

Most of DH family on his mums side were born with cataracs. Although Isaac wasn't he has check ups every 6 months to keep an eye on him in case it develops. At his appointment in July DH had to take Lo without me and was asked to take part in some genetic research into Cataracs and whether it can be predicted if lo will develop it.

Our appointment is next friday for the testing and I am a little worried about what is involved. They have give us no information about what we have to do and how they get DNA. I have told DH that if it involves taking blood from lo then I will not allow it. (unless it is a prick like the heel prick newborns have- needles withdrawing blood NO WAY!) I know it will awkward if i pull the plug last minute but as they are giving him check ups twice a year I dont see the benefit in putting him through that and I will not hold my son down whilst they do something that may not benefit him at all.

Has anyone had genetic testing? Can they just take a swab or something? Would you agree to withdrawing blood?

Mmm it's difficult because I understand you not wanting to see you son in pain but is there any more pain in a blood withdrawel compared to a heel prick (apart from the needle going in I think the rest is pretty pain free?) Also I would be asking myself what the benefits are to find out if LO is at risk of developing it? Like can they slow down or prevent any side effects if they know it's coming look into appropriate treatments beforehand rather than wait for it to develop? Also like PP said- helping another child in the future and maybe possibly finding a cure, if your son is a carrier and passes it onto his children then maybe one day he could have had a small part in finding a cure for -potentially- his children?!

In the end the decision is up to you but to answer your question I would agree to withdrawing blood as long as their were benefits!

 

[kosh]

I work in genetic research into a different disease but recruitment should be similar - pediatric nurses are really good at taking blood from infants but I totally understand your concerns. How old is your LO? they should also be able to take a saliva sample and/or swabs. Could you get in touch with them before hand to request that? They will need a special kit etc.

where are you based?

your LO might or might not directly benefit from this particular research, but the more we know about diseases the more will be able to help others in the future.

 

[seoj]

I think I'd go- and ask what was involved and how I felt. Just trust my gut. As I'd hope other kids could take part in something that might benefit my LO- as others have said, but, we also have to be our kids advocate and put their well being first. But if it were just a blood draw- those tend to be fairly quick and although it wouldn't be fun putting LO through that- if it helped them in the long run?

IDK- probably NO help. Just do what your comfy with hun. You can't go wrong then!

 

[NoodleSnack]

You should have the right to withdraw if you really don't want to continue. Don't feel obligated to continue if they have not answered your questions or provide you with enough information to make you feel comfortable with going through with this.

 

[emyandpotato]

Rory has had genetic testing and it's a blood sample and a urine sample taken in hospital. They put numbing cream on an hour before, leave it to work while the child gets to play in the hospital play room, and then are very professional about taking blood- with Rory they put the TV on and put his hand behind his back and he didn't even notice. In fact he thought it was a great day out!

 

[sequeena]

It is completely up to you but I will say my son has had several bloods taken from newborn to just a month ago and yes he cries but it is a temporary pain. He's due to have genetic testing in 2015.

 

[.Mrs.B.]

My LO had blood taken when he had just turned 2. The nurses were very good, they got the needle in quickly and my LO was interested to see his blood come out. They couldn't get enough blood out of one arm so they had to do the other as well and he happily let them do it again. When it was finished he looked at me and said "arm?", which was cute as he wasn't talking much then.

 

[missk1989]

I will definitely be going but would feel much more comfortable if we had some information about the process. DH didn't ask anything about what was involved when he agreed to do this. I have always had alot of trouble giving blood as my veins are hard to find (runs in the family) which is why I am wary of Isaac doing it. If he seems happy enough to do it then we will continue but if he starts to resist I will be pulling out. From what I know they are looking to predict it not cure or prevent it. It is easily treated with laser eye surgery and glasses. My DH used to say that it wasnt a big deal when I worried about lo getting it so I am comfortable withdrawing if we have to.

Thankyou for your experiences. I dont feel as anxious now.

 

[annanouska]

They normally resist being held down the needle and collection should not hurt they cry as it is unf,ailing and u are holding them down my son has had a few blood tests, two weeks ago we took 6 bottles in one sitting, a vein collapsed we had to switch points it took 45 mins but he was calm with daddy got a reward after etc. normally his bloods are very quick this was a more in depth for genetics.

Is harder to watch as a parent I think, but its for the greater good. In my case its to understand and help my son in yours to help others maybe even future children of yours. In quite a practical parent in some respects I don't get emotional over jabs etc needs to be done xxx

 

[hattiehippo]

In your situation I would allow the testing simply because then you would know if your son has the gene that can cause the cataracts. It may not affect him currently but it would be amazing if they could then predict if he will develop them so can be ready and forewarned. Also if he does carry the gene, what about when he wants to have children - at least he would already know if he is likely to pass it on to them or if there's no chance.

I know the idea of him having blood taken is scary but it's something that could help both him and other children in the long run.

 

[kosh]

how did it go?

 

[missk1989]

The appointment is not until next friday. I will update that evening.

 

[kosh]

The appointment is not until next friday. I will update that evening.

sorry I thought it was this Friday, but I also though that yesterday was Friday!

can I just say again, if you call them and let them know your concerns about taking bloods etc they should be able to provide alternative like swabs and saliva kits.

 

[Tor]

With the original genetics test it was a blood sample from DS1 and me and oh but for the research that we are a part of it was just saliva samples so it could go either way.

Personally I would do it but its upto you and what you feel comfortable with, there were tears even though he had the numbing cream but it really wasn't that bad.

 

[mummy2o]

My son had a blood test when he was 2 and a half, maybe 3 and was fine with it. They put a DVD on which he wanted and distracted him. 5 seconds later the blood was taken and he was none the wiser, although he did request cake afterwards (but this was common for anything we did). So I guess it was a nice nurse as he screamed blue murder when he had his injections done!