Tips for Diet Management from PKU Families
Blood Drawing Tips
Organizing for the Blood Draw
Preparing Your Child for a Blood Draw
Blood Drawing Devices
Drawing the Blood
Feedback on Blood Results
Coping with Blood DrawsParental Attitudes
Helping our Children Cope
The "How To" of Drawing Blood
Drawing Blood at a Clinic vs. Home
Sample Collection Methods
Blood Drawing Tips
Organizing for the Blood Draw
Have address labels made with the child’s name, address. It can then be used for putting on blood samples sent to the clinic as well as other things. On the label I write down the date, and what test needs to be done on the sample to make sure there is no mix-up.
We use preprinted labels (the kind you get from mail-order, usually 1000 labels for a few dollars) with the Newborn Screening lab’s address on it when we mail our finger prick form each week. It saves us lots of time.
We keep the materials needed for the finger prick in a cosmetic box that we have decorated with stickers. It’s about the size of a small tackle box.
We have graph paper on our fridge charting each blood test my daughter has done. She can see for herself where her phe levels are all the time and now shows more interest in them.
Preparing Your Child for a Blood Draw
Buy brightly colored Band-Aids or ones with characters on them. The child can pick out a fun Band-Aid after a blood test. We have over 11 boxes of different types of Band-Aids!
I am constantly in search of different Band-Aids for the collection. My two-year-old picks one out before we take the sample and holds it until we’re ready for it.
Offer a treat after a finger stick; this may be a sticker or something to eat.
For my 6-year-old son, we first tell him that we need to do a blood test that night. I ask him what special treat he would like (within reason), such as a popsicle, bubble gum, coke or bag of Skittles. Then he gets the treat and we sit and talk about doing the blood quickly so we can do something else. This works for us.
When it is time for a blood sample, I let my two year old choose which finger to prick and then we make a big deal about "painting the circles" (on the filter paper card).
Before beginning to do a blood draw on our two year-old son, we try to create a quiet environment around us: no TV, no loud noises. We give him something to hold in his hand that won’t be stuck, to draw his attention away from what we’re doing with the other hand.
My son is 2 1/2 years old. For the last six months we have had great blood drawing sessions. I am always looking for fun Band-Aids (dinosaurs, etc.) so we have a good collection. First he selects which Band-Aid he wants. Then he chooses which finger we will poke. Then we fill in the "big red polka dots" on the blood card our clinic uses. I keep the session light and tell him it is "no big deal." Now, when we're done he tells me, "See mom, no big deal!" I think the key to our success is the fact that he has control in the decision-making process (which doesn't happen a lot when you are two and have PKU!)
Blood Drawing Devices
Use the Soft Touch lancet. It is the best device we have found, after trying all available.
The SoftClix is guaranteed to be the most painless lancet or your money back!
After trying many different brands of finger sticking devices, we have found that the best one is the Ame's Glucolet. It is comparable to the "Soft Touch" device; the only difference is the location of the "trigger." It is shaped like a pen with a concealing cap. You load it by inserting a "unilet" into the end and replacing the cap. It gives a good stick but doesn’t cause a lot of pain. The best thing about this one is that after it’s loaded you can’t see the point on the unilet and therefore you aren’t anticipating the pain. And the unilet will automatically retract into the casing.
Since we have been using the glucolet, we have had stress-free finger sticks. My two year-old son doesn’t even cry! He does not enjoy the stick but is very calm and relaxed while the blood is being applied to the filter paper. One device I strongly recommend NOT using is the Microtainer Brand Safety Flow Lancet. We used this on our son’s heel when he was an infant and he has little scars on his heels.
I have a 2 year old daughter and I use a device that I bought at a drug store near us that is used by diabetics to do their blood work. It sounds a lot like the Tenderfoot but it looks like a pen. It is also spring loaded and all you have to do is push a small button and it pokes the finger for you. You can control how deep the lancet goes into the finger etc. The pharmacist was able to show me different kinds of tools that diabetics use. It is a lot easier on me to do it this way then to poke my daughter with a needle.
There is a better way to do a blood test than using the poke method with a lancet. When my son was in the hospital just after birth, I noticed that his newborn screening test was done with a device called a Tenderfoot. It is a small, spring-loaded box that you hold against the baby's heel and then press a button that activates a blade that will take a swipe at the heel. This swipe makes a shallow abrasion that easily produces enough blood to fill the PKU filter card. It is much less painful than poking a child with a lancet. On some occasions, my son has even slept through his blood test when we've used this device. Also, because the spring-loaded box actually takes the swipe for you, it is much less agonizing for the parent to do. The Tenderfoot is a great solution, but there is one big catch. These devices are normally sold in big lots to hospitals. They are not normally sold directly to consumers through pharmacies. I was luckily able to obtain some samples directly from the company that makes them, but I'm not sure that they would extend this same offer to other people. As a result, I have a couple of suggestions: See if your local hospital uses these devices, and then ask if you can purchase them through the hospital. Or, call the manufacturer, to see if you can purchase directly from them. When I originally asked about this, I think they told me that prices for small quantities of these devices were about $3 each for a minimum order of 50 devices. The Tenderfoot is a prescription device, so if you are able to obtain some of them, they will probably have to be sent to you through your child's pediatrician. The company is ITC (International Technidyne Corporation) out of New Jersey. The telephone number is 1-800-631-5945.
For older children, this company makes a device called a Tenderlet, which provides a better way to do a finger stick. That product is sold over the counter, so ask your pharmacist about it.
Drawing the Blood
Emla Cream, designed for children, releases an anesthetic into the skin that can ease the pain of blood draws. It does require a prescription. In general, it is not recommended for children under the age of one year. It needs to be put on at least sixty minutes before the draw for optimal numbing. Emla Cream may not be appropriate for some children for whom the anticipation of the draw causes more traumas and tears then the actual draw.
When doing a finger or heel stick, make sure the room is warm and arm up the heel or finger with warm water before doing the stick to help increase blood flow.
Wipe the punctured spot with cotton balls, alcohol pads, or a rag to encourage more bleeding.
Do the test after a bath so the finger or toe is nice and warm and blood will flow more easily.
Massage the leg or arm really well before hand to stimulate blood flow to the finger or toe.
When drawing blood from any of the fingers, simply keep the hand lower than the heart for better blood flow.
We warm our baby's heel with an electric heating pad for a few minutes to get it warm.
Wash your hands and your child’s hand with soap and lukewarm (not hot) running water. This cleanses the hands and gets the circulation going at the same time. Another method we use for warming the fingers is a little chemical pack called the "American disposable Infant Heel Warmer", made by the American Pharmaseal Company. It is a sealed plastic package that contains a bubble containing chemicals. You squeeze the package with both hands, the bubble inside the package burst and causes a reaction in the chemicals that causes the whole thing to get very warm. Nothing spills out; it all stays enclosed in the plastic. I have found it very convenient and my son seems to get a kick out of it. You don’t have to hold the hand on the pack for a long time, but just letting the hand come into contact with it 4 or 5 times will help warm the fingers.
Wipe the finger with an alcohol swab after cleaning it, then a clean dry cloth or dry cotton swab. Gently manipulate blood toward the end of the finger. Place whatever device you are using on the side of the finger and perform the stick. Allow the puncture to open and the first drop of blood to form, then wipe that drop off with the gauze pad.
We’ve been told by several reliable sources that is very important because that first drop may contain tissue and will give a false reading. When the second drop forms, gently apply it to the filter paper or drop into a tube (depending on the method you use). I’ve been told that the side of the finger and side of the heel is where to stick, not the middle of the heel pad or the middle of the fingerprint because on a small child, even though their fingers and feet are chubby, you may contact a bone. The side of the heel or finger is also less likely to be callused and will bleed easier.
Some children prefer blood draws from the big toe.
Always do the finger stick on any finger but on the side toward the thumb. Never take it directly on the tip. That is where the nerve endings are and the "bleeders" are on the side towards the thumb. (If you turn your hand over and look at your hands, it is the area from the center of your fingertip to the right on your right hand. On the left hand, it is from the center to the left.) This area of the fingers is the "bleeder" and has always worked for me. I was so glad to have learned this. It is miserable that lab technicians don't know this secret. Also, remember warm water helps, and always hold the hand down when drawing the blood. Blood doesn't like to run uphill, no matter how hard you squeeze it.
When my daughter was born, the health nurse drawing her blood for the initial newborn screening gave me a great suggestion when trying to do my son's blood work. She said to soak the finger/thumb/toe/heel -wherever I was drawing the blood from - in hot water. Then she said to see if it is ready press on the area and release. When the "white"went away very quickly—less that a second—and turned red, it is ready for the prick. When trying this method, the blood flows very quickly from my son's thumb or finger and in a flash his blood work is done. There is no more squeezing the heck out of his finger to get a little tiny drop.
Feedback on Blood Results
Suggest to your clinic that they start a "postcard program" for children whose diets are monitored there. The clinic nutritionist may be willing to send a postcard with a preprinted message on it about why the blood was taken (to see if you were getting "just the right number of phes in your diet" or something similar and a "fill in the blank" spot for relaying blood results directly to your child. A special sticker with a happy face printed on it for a blood test in the hoped-for range, a sad face for unexplained levels out of the desired range and a message about that, and a "neutral" face for when the blood test is elevated due to illness and an explanation that the level is probably elevated due to illness. All children look forward to getting mail of their own. Getting direct feedback about blood levels will help them to become more aware of their diet and motivated to get "happy" faces and stickers that they can display in a special place in their room or another part of the house. (Such a program was instituted at the Waisman Center in Madison, Wisconsin back in 1979 by Virginia Schuett, and continued successfully for many years). Many parents reported that the anticipation of a personal card in the mail reduced resistance to blood drawing and increased their child’s awareness of WHY blood is drawn. This was done for children of all ages, starting at about age three and including teens (a different card and message was tailored for the older age groups).
Coping with Blood Draws
By Kathy Jackson, RN, MSN, PKU mom
From National PKU News, Fall 1998
There are some things I hate about my daughter having PKU. One of them is the blood draw. When Tricia was an infant, rather than driving her downtown to the lab, I began doing the heel sticks myself. I cried along with her. She is now eight years old. I don’t cry any more, but I still feel like it sometimes. This doesn’t mean my attitude is "woe is me." My husband and I are extremely grateful. Although our beautiful daughter has a metabolic disorder, she is healthy, talented, and very intelligent (typical assessment of proud parents)! Thus, our approach to blood draws are that they may be unpleasant, but they are very important. We remain positive. This attitude matches the attitude of so many parents who wrote to us from the PKU Listserv group, in response to our request for input on this article: "That’s life sometimes," "it beats the alternative," "it will be over in just a minute." These are just some of the things parents tell their children.
It also is important for the parent to remain calm—especially if the child isn’t. Although it is beneficial to acknowledge the child’s feelings, and even your own, maintaining control of your own emotions will enable your child to learn to cope in a matter-of-fact way. Being a source of comfort and love is the main role of the parent in this situation.
Helping our Children Cope
In the Spring/Summer 1991 newsletter, Deborah Padgett, Clinical Nurse Specialist and Pediatric Nurse Practitioner in Seattle, wrote an excellent article dealing with blood draws and the developmental stages of children. Instead of rewriting what she wrote, I’d like to apply some of these concepts to the information I received from parents who are part of the PKU Listserv group.
Anticipation of the event causes some children to build up more fear the longer they think about it. Children as young as three months can anticipate. According to Ms. Padgett, for children under age two, it is best to keep the child from knowing about the blood draw until the time of the draw. After that, Ms. Padgett recommends from one to five minutes of preparation for each year of the child’s age. The theory behind this "rule of thumb" is to help the child begin to develop his or her own coping strategy. But it may not work for some children. Some parents stated that anticipation of the draw increased their child’s anxiety so much it was difficult to do the draw, even at grade school age. I received many responses from parents stating that their toddlers were very good about the blood draw until about age three. At that point, they began fighting the draw with a passion. At times the fights continued until about age ten.
Families on the PKU Listserv group had many helpful hints for younger children. These include:
Let the child know "it will soon be over." Because younger children do not have a concept of time, a parent can say that the stick will be over by the time they say their own name three times.
Develop a routine. Do draws the same time, same place. And let the child have some control over the situation.
Debbie Rifkin (TX) takes her nine year-old daughter into a pre-warmed bathroom. Katie runs around to get the blood circulating and then warms her finger in warm water. They use lots of Band-Aids for both of their kids (who have tyrosinemia).
A registered nurse, Robin Glennon (NY) has her two year-old son, Liam, help gather the supplies and then choose which finger will be poked. She also tells Liam what they are doing and why. This helps Liam intellectually understand, and the routine helps him cope emotionally. Several other parents wrote that having the child help set up supplies decreased their anxiety.
Consider rewards and using fancy Band-Aids. Miles Millington from England states that they have used a "star chart" for their 4 year-old daughter. For every blood draw, she puts a star on the chart. After so many stars, she gets a small present. The rewards parents suggested varied from special trips to a fast food restaurant to small, inexpensive toys. One parent wrote that the rewards worked for awhile, but as the child grew, the rewards did not seem to work as well.
Try "attention diversions." This is another technique parents suggested—from watching TV or singing songs to laughing and playing. Barb Rowe (NY) stated they joke about whether their 7 year-old daughter’s blood will change color as it comes out. "Is it going to be green?" They stick her as she laughs and she hardly notices the prick. For clinics using filter paper blood spots, many parents have the children paint the circle with their blood on the filter paper.
If you are doing the blood draw at home, it is helpful for both parents to be involved. One can comfort the child while the other is doing the stick. At home or in the lab, it is helpful if the child can sit on a parent’s lap. Being surrounded by comforting arms is very calming.
Let the child do the blood stick on the parent so the child can see it isn’t so bad. This is another idea from the PKU Listserv group. My daughter loves this idea. But I am nervous (this helps me understand her reluctance)!
Gradually increase the child’s control of the blood draw—to the point that at about age ten they do their own draw. This important advice is based on experience of the PKU Listserv group. At earlier ages, the child can choose which finger to poke, get out the supplies, pick the reward system, pick out the Band-Aid, and pick the "distraction." One parent stated that giving the child more control over the blood draw also decreased the child’s cheating on the diet.
Laura Ambre, who is now age 18 and attending Dayton University (OH), stated that she started doing her own draws nine or ten years ago. Having control over her own blood draws helped her accept them as "part of life." The PKU clinic in Denver teaches children to do their own draws at about age twelve. They teach the children in groups (same age/sex), developing camaraderie.
Part of growing up is gradually becoming responsible for one’s own life. The control issue is one that children and parents constantly struggle with each other over. Usually children will want control of things before they are able to handle it. Likewise, parents have a hard time gradually giving up control over their child’s life, especially in the teen years. Parents of teenagers stressed that it is the teen who is in control of their diet and blood draws, whether the parent wants them to be or not. That is why it is imperative for parents to give their child increasing control in the grade school years over the blood draws and diet. Then by the time they are teens, they will already have most of the responsibility for managing PKU. Hopefully, PKU management will not become a control issue to be fought over between parent and child in the teen years if this control is given to the child early on.
One parent of a teen stated that she regretted not giving more control sooner because now her teenager refuses to be on diet. She feels that if she had given her son the responsibility when he was younger, it would not be a control issue now. That is the feeling of many parents.
The "How To" of Drawing Blood
For doing the blood draw at home, the device most used by parents on the PKU Listserv group was the Microtainer brand Safety Flow Lancet. The parents who use this brand state that the lancet comes in different depths of penetration. As the child gets older, the depth needs to increase. Soft Touch II (used at an adult setting) and Tenderlett also were favorites. Some parents felt that Tenderlett was great until the child was older and needed a deeper cutting model. Others felt Tenderlett was still preferable for all ages because it causes little pain. Becton Dickinson's Ultra Fine Lancet also was given excellent ratings; however it is more difficult to find. Some parents recommended Autoclix because it requires no button pushing. It automatically sticks the finger when the finger is held to it. One parent stated this is very helpful when dealing with a squirming two year-old. However, another parent stated their child didn’t like the Autoclix because it was always a "surprise" when it poked. Some parents don’t use any device, but simply use the lancet inserts. One parent said using a device helped her daughter associate the pain coming from the device and not mom.
Tenderfoot, by International Technidyne, works well on infants and toddlers. This also can be used on fingers, but by the age of two it may not penetrate well enough. A diabetes nurse in Cincinnati, Beth Lucas, RN, stated her patients prefer Softclix because of the ability to dial depth; and to them it seemed the least painful. This device only has been on the market for about two years.
Whichever device you use, if in doubt about its function or effectiveness for your child, have someone in the lab or clinic demonstrate it for you.
Emla Cream ("Eutectic Mixture of Local Anesthetic"), can be used to numb the area to be pricked. It does require a prescription. The ingredients are Lidocaine 2.5% and Prilocaine 2.5%. Emla Cream is used most often for venous draws because it does not work as well on finger sticks. In general, it is not recommended for children under the age of one year. It needs to be put on at least sixty minutes before the draw for sufficient numbing. The analgesic affect will remain for two to three hours and can persist for one to two hours after removal. For optimal benefit, it should be put on thickly, with an occlusive dressing (no gaps) on top. Undesirable side effects of Emla Cream are few for those with normal skin. The skin may wrinkle due to a drying out process (like in the bathtub), but this is only transitory. Also, it may cause transient skin pallor from local constriction of blood vessels.
One parent wrote that they were told Emla Cream might make the veins shrink because of this vasoconstriction affect. However, according to Astra, the company that makes Emla Cream, the vasoconstriction is only in the capillaries (the smaller blood vessels), not the large veins from which the blood is drawn. So there should not be an adverse affect on one’s ability to draw blood or start an I.V. when Emla Cream is used. Emla Cream may not be appropriate for some children for whom the anticipation of the draw causes more traumas and tears then the actual draw. However, for others, the use of Emla Cream has made blood draws a much less unpleasant experience.
Preparing for the Blood Draw
When doing a finger or foot stick, it is most helpful to warm the site for a few minutes beforehand. This helps a lot in developing a good blood flow. (Infants are stuck in the heel or big toe, usually until they begin to walk; then a thumb or finger should be used.) Some parents will wrap the hand or foot in a warm wash cloth or diaper. In the hospital, we would wrap the foot in a warm wash cloth and put a plastic diaper over it to keep the bedding from getting wet. Some people will soak the area in warm water. One parent states that their child loves to play in the warm water. Brenda Rakoczy (ND) recommended Warm Gel Infant Heel Warmer by Prism Technologies. Although these are disposable, for her two year-old, Brenda has found she can get multiple uses by boiling it for about five minutes after use. For older children and adults, doing the stick after a warm bath or shower will have similar results. After warming the area, rubbing it also will increase the circulation.
When doing the actual stick, keep the finger or foot below heart level and use the side of the foot or finger to poke. Let gravity help by hanging the foot or hand down. If only using lancets (without the device), insert the needle quickly and firmly for the least amount of pain; there is no danger of sticking the lancet in too far. Then using intermittent pressure, squeeze the finger or foot for a few seconds, than release and repeat to help the blood flow faster into the tube or onto filter paper.
Drawing Blood at a Clinic vs. Home
Where to draw blood is often an individual decision. Some parents feel they don’t want to be the "bad guy," or that their children have less anxiety with a professional. So they take the child to their clinic, local hospital, or local family doctor for venous draws or a finger stick. Other families choose to do the draw at home whenever possible because it is more convenient.
If you are mailing the blood from home, there are now specific postal regulations usually requiring a metal tube for the sample, as well as blood product labels. If there is the possibility of temperature extremes, the sample might need to be mailed "overnight" because the mail has no temperature controls.
Sample Collection Methods
Different labs have different methods of analyzing blood phe. There is the Amino Acid Analyzer, Fluorometric Analysis, Guthrie Test, and Tandem Mass Spectrometry. According to Dr. Harvey Levy (MA), only the amino acid analyzer requires a liquid specimen, while the others can be done with filter paper. The amino acid analyzer can be done "by hand" or automated. If it is automated, more blood is needed. The Guthrie test is the oldest method and the one most used by state laboratories. It is a very close estimate rather than an exact number and was designed mainly for screening rather than monitoring. Tandem Mass Spectrometry is the newest technique. It is the most accurate of all, but not widely used as it is too new. Your clinic can tell you which method their lab uses and how to properly collect the blood sample.
Thanks to all who contributed to this article, including over 100 families on the PKU Listserv group; Dr. Kerr (Cleveland); Dr. Levy (Boston); Judy McKunkle, RD (Cleveland); Debbie Briggs, lab tech. (Cleveland); Jan Habel, lab tech. (Cincinnati); Beth Lucas, RN (Cincinnati), and Debbie Rifkin, pharmacist (Plano, TX).
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Last update: 03/01
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