I have a 10 month old daughter who has CPKU. We have been using generic CVS lancets on her. Originally, they seemed to produce enough blood for her weekly blood test although we sometimes had to poke her 2 or 3 times. Lately, we have had to stick her more than that to get enough blood and it was breaking my heart. I got some samples from the clinic we take our daughter to, a lancet made by HTL-Strefa. They work wonderfully, but aren't actually the ones recommended for infants. I have called HTL-Strefa 4 times over the last 3 weeks to try to get samples of the ones recommended for infants. I have spoken to the same lady all 4 times that keeps assuring me she will call me back after she speaks to the president of the company about sending some samples. As recently as this morning, she promised me she would call me back within the hour and that was over 2 hours ago. So, needless to say I am VERY frustrated as we have found something that works great but can't order them online and can't get anyone to call us back!! I would love to hear advice from other parents about what type of lancets they use on their babies. I am really looking for something that produces adequate blood volume and is fairly painless. We are still testing on her heel. We have tried her big toe but that didn't do any better than her heel. Also, I am looking for something I can get at a drugstore or order online. After dealing with HTL-Strefa and getting nowhere with them it would be nice to be able to do the ordering myself and know it's done. As of last night, we had to use the CVS lancets again and stick her 4 times to get enough blood so I would love to have something new by next Sunday for her next blood test. Thank you for any and all advice!! I appreciate it!! ~Emily
I really recommend going to this website catalog.bd.com/bdCat/listProducts.doCustomer (bd.com). There are plenty of lancets there that you could look into. We currently use the BD Microtainer Contact Activated Lancet blue 1.5 x 2.0 mm. You can find these lancets at this link catalog.bd.com/bdCat/viewProduct.doCustomer. These lancets are not specifically made for infants, but my mother uses these lancets for Genavieve, my fourteen month old sister and Erica my ten year old sister, and they work just fine. I have always struggled with blood tests as I am not very fond of needles, but when my clinic introduced us to these lancets I became much better at doing blood tests. The are pretty much painless and it should only take one poke to get enough blood. More than half the time Genavieve doesn't cry at all!
The other lancets we have used that work just as effectively as the BD Microtainer is the BD Genie blue 2.0 x 1.5 mm. You can find these at this link catalog.bd.com/bdCat/viewProduct.doCustomer. In general we've been very satisfied with the lancets we have used from the BD company.
I am honestly not sure how/if you can order these lancets online, because we receive our lancets directly from our clinic. You will have to explore the website to find out. Have you talked to your clinic to see what lancets they recommend or where you could look for new lancets? I would give you more suggestions, but unfortunately these have been the only lancets we have used that actually work. My only advice is to avoid lancets/lancet pens that are typically used for diabetics. They will be relatively painless BUT they will NOT produce nearly enough blood, and you'll probably end up poking her six or seven times. My other advice is try to use lancets with click activation rather than lancets that require a straight stick (not sure if this makes sense). The lancets I used until I was about fourteen were lancets that my mom would almost litertally have to stab me with, and it was very unpleasant haha :).
Please let me know if there is any other way I can help!
Breanna 18 CPKU
Thank you very much Breanna! I will definitely check out this website. We are currently using the device that diabetics use and it definitely doesn't produce enough blood. I will let you know how the new ones work out if I can get my hands on the kind you use!
Bummer, I just called BD customer service and they said the kind you use are only available for order through a hospital or clinic. If anyone else out there has any ideas, please share. I will also try to call our clinic (Riley Hospital) to see if they have any other suggestions.
I was also using the cvs reguilar lancet and the first time I had to stick him 6 times it was horrible then i went to my local hospital and they gave the some tender foot lancets that they use for the newborns, they work awesome. my dcotor now is trying to get them for me through pharmacy through CVS so talk to your MD. I also warm his foot for about 5-10 min with a warm wash cloth before i do the stick to help the blood flow.
I am 18 and I have been doing blood pokes at home since I was about 12 I think. I just use a diabetic type of lancet device that kinda looks like a pen and you can control the deepness of the poke. I have also found that if I am more hydrated that changes how much I bleed. I understand you have a young daughter and that may not be so easy to achive. Also one of the things that the clinic I go to has taught me is that if you warm the area in which you would like to poke it also gets the blood flowing. So I normally poke my finger and I either soak it in warm water or I rub the side of my finger on my thumb to get it warm.
Well I just thought that this might help.
I have to second the tenderfoot lancets. They are a thin, longer slice. It is very clean, but always gets enough blood on the first poke. We used them for my son, who is now 2 and doing finger pokes now. When he was very young we used the infant tenderfoot (we purchased them through our pediatrian who used them for the second newborn screening test in office), and when he became older around your child's age… we switched to the toddler tenderfoot. This helped us to make one clean cut everytime. Hang in there! You are close to being able to switch to the finger. We switched around 20 months to the pen.
Thank you everyone for the advice! I spoke to a company on the phone today who is supposed to be contacting Marley's doctor to get a prescription for the Tenderfoot or Tenderlett lancets. They said it would take 6-8 weeks though to get approval on insurance after getting the prescription from her doctor. In the meantime, my husband and I made several phone calls and ended up getting referred to a website to order the exact same lancets we were looking for originally. YAY!! I hope they work well, but if not, hopefully in 6-8 weeks we will have the Tenderfoot lancets and it sounds like they are the best!
Do the fingers bleed alright for the blood tests or do you still have trouble getting enough blood? When you say you use the pen, I assume you are referring to a lancet device like a diabetic uses?? Just trying to get information for the future.
Thanks again everyone!
|Blue Cross Blue Shield||Covers: Medical supplies, including colostomy bags, catheters, oxygen, needle, syringes, and special bandages.
|CIGNA / Healthsource||Covers: Non-durable medical supplies from a participating provider’s office or by an approved home health care agency for the treatment of a specific medical condition.
Limits: Maximum benefit applies.
Excludes:Medical supplies, such as, but not limited to, bandages, cotton gauze, hot or cold packs, syringes and needles (except for insulin
syringes and all diabetic supplies).
Found the above info this URL. I think its great that CIGNA covers diabetic supplies, but not PKU. Its like we are just bad people. I know that's not the case but no one knows about us PKUers.
The main reason diabetic supplies are covered is because diabetes is much more prevalent than PKU. I for one know at least five or six people from my everyday life that have diabetes.
Brea is absolutely correct! Many people just simply do not know what PKU is. Seek your doctors for medical documentation stating the important you MUST follow a low-protein diet (through low-pro foods) and also formula is essential to get the appropriate protein in your body too!