Hi everyone, I’m glad to have found this community! I have a six month old daughter with a PAX2 gene mutation that caused her to have two tiny dysplastic kidneys. Her creatinine is about 0.7 now and she takes Calcitriol. She shares this condition with my husband who has had two transplants (one at 9 and one at 18) and he’s doing amazing so that keeps me feeling hopeful that my daughter will be ok too.
We’re fortunate that frequent blood draws are the hardest thing she’s going through right now but I would love some advice on any ways to make it easier because it is so heartbreaking. Our hospital doesn’t have a vein finder and they stick her so many times and her screams are haunting..we both end up in tears every time. I dread the labs so much because of how many attempts are needed and I feel like she can sense my anxiety and it makes it even worse.
Does anyone have advice on getting babies through blood draws? I’ve asked nephrology about numbing creams but they were hesitant to use that on a small baby. Thank you!
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DRM23
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Hi there! Congratulations on your baby girl. Hearing your husband’s journey gives me (mom of a 3 year old with stage 3 CKD due to reflux nephropathy) hope. I was literally just Googling “male fertility CKD” about an hour ago (I go through phases where I worry about his future) - so very odd that I just happened to see your post now.
Anyway…
No real advice for the blood draws; they are so hard at that age - and I totally understand what you mean by the haunting cries. All I can say is things do get better. At 3, my son understands he needs to get bloodwork and while he doesn’t love it, he now knows he gets a treat (a small toy) afterwards - so he is remarkably brave. Our doctor gave us some numbing cream to put on his skin before we head into the lab - which is hit or miss, but something to ask your doctor about (it’s prescription; don’t try any otc stuff).
If by vein finder you mean the light they can shine to identify a “good” vein, I will share that with my son, the pediatric hospital had limited success even when using that light, so I’m not entirely sure how effective it is. Don’t beat yourself up. Would be nice to try but it may result in the same outcome (tears).
I wish I had a better suggestion than “give it time” - but that’s been our experience.
Wishing you all the very best - with your support and outlook, your daughter is in great hands, I’m sure. If you’d like to connect, send me a private note.
Thanks for taking the time to reply! Good to know the vein finder isn’t the magic fix I thought it might be! I will ask about numbing cream if it doesn’t hurt or might only help we might as well try it
I so know what you mean about going through phases of worrying about our little ones futures. Pregnancy is so risky for a woman with CKD and her condition will be passed down without genetic testing of embryos so becoming a mom will be a difficult road for my daughter if she chooses it. My husband and I did use IVF due to fertility struggles but there is so much hope in the new methods they’ve developed such as ICSI that works for male factor infertility and we had no issues making a lot of embryos through this method. And I bet in 20+ years from now when our kids get to that life stage there will be even more advances in the fertility field!
I am so sorry you are going through this with your young daughter. I also had to do that with my baby very often when she was pre-transplant and I remember being very stressed about it as well. She is now 16 and still goes for monthly labs but is not phased by it at all now. I would definitely push for a lidocane patch to be used on your baby before the lab draw as it may hurt less. There are so many things that will make a young baby cry - it is so hard. If they are having trouble finding her veins you could ask if there is someone with more experience with babies? Maybe from the NICU? When my daughter had to have IVs placed we would allow someone to try only twice and if it was unsuccessful we would request vascular access to be called as they were more experience. Don't be afraid to speak up and try for things that might make it easier for your daughter. You are her advocate and professional hospital personnel will understand that you are doing what you think is best for her. Good luck!
Thanks for taking the time to reply! I’m glad to hear your daughter is doing well and isn’t phased by it any more! Do you mind me asking do you have a lab draw routine or certain things she requests at the lab or does to prepare to make the draw easier?
I will ask her nephrologist about the lidocaine patch and will definitely ask for the most experienced person with babies next time. I’m a shy person and avoid conflict/confrontation so I struggle with speaking up in medical offices but I’m working on it for the sake of my daughter you sound like a really strong parent!
Hi there. I wasn't always vocal but having a child with a chronic illness and watching that child suffer made me speak up! When my daughter was younger I used little rewards after lab draws like stickers, chocolate milk, or a special breakfast (bagels, donuts, etc.) as a reward. Now that she is a teenager she prefers if I step way back and let her be in charge. She drives to the appointment, registers herself, communicates with the lab tech, etc., all with me waiting around in the background. It's part of her taking on her own care and I am grateful for that. I'm sorry that these suggestions won't help your 6 month old baby. I guess I would say that my daughter does not remember all of the things that were traumatic for her as a baby and by the time she did remember (around 3 years old) it was pretty routine for her. It's hard for us, the parents, to forget though, right? When she's older maybe get her a doctor's kit and a baby doll so she can take the baby with her to the appointment and she can talk it through with the doll? This can also help older siblings understand what is going on. I hope this is sort of helpful? Feel free to ask more questions!
The lidocaine patch works wonders. We use these for every blood draw. I am still flabbergasted that no one mentioned they exist to me even after my son injured a nurse who attempted to take blood. They knew he was in therapy for phobia of needles after what they did and they still didnt mention it. It was a very nice pharmacist who knows my child and had heard what was going on who mentioned the patches. Unbelievable that the patches arent routine for chronic kids.
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