The AFP testing

[BritneyMariah]

My daughter is 4 months now and when born we found out she was diagnosed with BWS. With BWS an ultrasound screening and AFP testing is done every 3 months. Well I got the ultrasound a month ago and everything looked good. Well I tried to get the AFP blood work done and the lab guy missed on both arms and my daughter was screaming, it was so very sad. I don't want to go through this at all let alone every 3 months. He was not able to get blood work so I decided to go again another day because it was too much on my daughter. I was wondering if anyone had any problems with getting this test done, like where did the poke her to get the blood, or did you have someone special do it for your baby? Thank you for your help!

[4boysmomma]

You can try using a freezing cream on her arm about 20 minutes before the test. As a momma of a 3yr old bws cancer patient these tests save lives. Its worth it even if its a bit of a bother.....she is worth it!

[BritneyMariah in reply to 4boysmomma]

Yes I agree it's worth it. Just only worth it if they actually get the blood. This guy didn't sadly.

[Songbird63 Administrator BWS Support]

Taking blood from small children and babies should only ever be done by people specially trained to do this. In my experience peadiatric phlebotomists are the best for this, usually more experienced than paediatricians. So make sure it is the right person. A lab technician untrained in this area should never do this.

There should also be a play specialist available to distract the child with stories or bubbles and balloons etc, although that is obviously more difficult with a four month old.

Also, in the UK, Great Ormond Street Hospital no longer recommend AFP screening in BWS because the test is deemed to be unreliable, so it may be worth discussing this with your peadiatrician.

[ccmama]

We get ours done at the hospital in the pediatric lab. I drive out of my way to do it but I feel they have great experience since they work with kids all day. I'd recommend a pediatric lab or asking specifically who does the best with babies and go when they are there. We have had blood taken from his hand as well as his arm. Make sure she drinks a ton before you go as it will help being hydrated and finding the veins easier. Also, it does get a bit easier the bigger they get. She is so little right now, those veins are hard to find.

[Dada2]

Hi,  advise you to use emla cream on both arms before half an hour at least , put just on the needed surface