Make Needle Sticks A Treat!

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Hemophilia shots don't "suck" for brave Jakob Watt

At my speaking engagements, I always mention that if you can deal with hemophilia, then you can deal with anything life throws at you. Kids need to be proud of their hemophilia and learn to tell their friends about it in a positive way. I also believe  that by being brave enough to infuse themselves with a needle – something most kids without hemophilia could never imagine doing, kids with hemophilia will be stronger and their friends will look up to them. This article is written by a mother of a young son about some of her ways to make giving infusions more of a treat and less of a tragedy. I will add that one of the highlights when I was growing up was getting back from the hospital and having my dad take me to  Dairy Queen for a Dairy Queen Dilly bar…That was a great time for me as a youngster!  Andy

Lacy Watt ( mother of Jakob Watt) writes:

Jake, a severe factor 8 Hemophliac, has always been an active bundle of joy to our family. At the age of 2 he experienced his first joint bleed in his ankle. It was a spontaneous bleed that occurred in his sleep. Anytime as a Hemophlia parent you awake to your child not being able to walk is overwhelming. We immediately went to our pediatrician who administered his factor. Our HTC was almost 2 hours away at the time.

Within a month our HTC decided is was best to have a port put in. I was a stay at home mom and my husband worked close to our home. We had a routine for our prophalaxis treatments. My husband would take an early lunch break three times a week and we would take turns doing his medicine. One would access the port while the other parent held down his arms to keep him from wiggling everywhere. We felt almost inhumane about holding our son down. We wanted our son’s Hemphilia to be a positive experience and something he did not grow up to resent.

So after lots of thought I came up with an idea. After every doctor’s visit he got a Dum-dum sucker from the doctor. This was a big treat for him. I do not keep alot of candy in the house. He seemed content after he got his sucker, then the idea hit. When we would begin to access the port we would give him a sucker. It was small enough that he didn’t drool everywhere and after accessing the port he was almost done with his sucker.It finally got to the point that I no longer needed my husband there to help me. I was able to access the port and handle infusions by myself.

After a year of doing this remarkably we started cutting back on the suckers and he stayed still during his infusions. Through communication and a positive attitude we have been able to transition to veins with him sitting still. We still occassionally use suckers during infusions. We have done this for 6 years and still NO cavities. We infuse in the morning so he just brushes his teeth afterwards

5 Responses to “Make Needle Sticks A Treat!”

  1. Debbie Stanglin Hartleben

    Monday, 3rd August 2009 at 2:00 pm
     

    Jakob is my grandson and I have seen first-hand the remarkable strength of my daughter and her family. She makes the infusions a family moment and my 8 year old grandson, Hunter, has also started being an active participant. My heart and prayers continue to pour out for Jakob and for all those facing devasting illnesses, especially with their children. Debbie

  2. OMG..I loved the part about feeling “inhuman” This is exactly how my husband and I got through the first few years. Jeryn is 4, will be 5 in December and has had his port since he was 2. Before this, my husband and I could actually infuse him at home because I was a phlebotomist..God really does work in mysterious ways..Now, he sits still for his infusions with no problems, and we are attempting to transition to veins. I still feel we have a way to go. Thanks for sharing. I will keep your family in our thoughts and prayers.

  3. my son was diagnosed with severe hemophelia a… i am so broken… i dont know what to do when he starts to walk…

    i cant bear the fact that he will bleed spontanenously without doing anything…

    🙁

  4. Ian, I understand your worry and your concern for your son’s future. You must know that there is hope ! When your son starts to walk you will be doing prophalatic infusions 2 to 3 times a week to maintain normal blood platelet levels. If a bleed occurs treat it and keep supporting your little guy. These boys will not grow up to be football lineman, UFC wrestlers, or boxers. But they will grow up to be the best that they can be. Swimming, and baseball are safe sports for these kids. The more physically active these youngsters are the more muscle is built up to protect their joints. The way you portray your son’s Hemophilia will be the same way he will perceive it too. Attitude is everything !! You can’t worry about the what if’s, it will drive you crazy. Enjoy your son, hematomas and all. Also get involved with your local Hemophilia chapter and attend events to meet other families that are living and coping with Hemophilia. If it brings you any peace of mind. My son is 7 and has had only 2 joint bleeds that were caught extremely early. There has been no damage to his joints thus far. Prevention and prophalaxis is the key to keeping your son healthy. I know all of this is overwhelming but just know there are others out there living life and over coming obstacles everyday that have had a much more difficult journey than what our youngsters will ever go through. The older Hemophiliacs are true soldiers of fighting for life and never settling. The Hemophilia community is constantly evolving, technology improving, and supportive of one another. Best of luck on your journey !

  5. I am the mother of 2 adult sons with classic severe factor 8 Hemophilia. David Mueller age 44 and Jimmy Mueller age 48. I was also the sister of a brother who is deceased as well as an uncle, a cousin and a second cousin. I have never breathed a breath without hemophilia in my live and I soon will be 76 years old. To the new generation I would like to say how blessed you are to have such new and wonderful treatments. Your quality of life will surley be so much better and less painful than those who have come before you. I was blessed to have a wonderful loving and supportive husband. We have been married for 52 years. In my generation ir was almost unheard of not to have a divorce in the family and I myself was the product of divorce because of the stress of the illness. As you all know it takes special parents to take care and treat these very special and loving sons. Sure I have been angry, sad and fearful. That is only human nature. On day I realized that I had to give up the control that I never really had and put my faith and trust in God. We all are who we are as a result of living with hemophilia and hopefully we are better persons because of it. I could go on and on about sleepless ntights, trips to the hospital and all the sadness but I choose to dwell on my wonderful sons and my 3 presious grand daughters who are also carriers. Life is good and someday this illness will be eraticated and the next generation will be so very blessed


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