One in A Million: Kyle Cluff’s Story, as Told by his Mom, Stacy

Categories: Patient Stories,Stories

The personal story below is intended for informational purposes only. The National Blood Clot Alliance (NBCA) holds the rights to all content that appears on its website. The use by another organization or online group of any content on NBCA’s website, including patient stories that appear here, does not imply that NBCA is connected to these other organizations or groups or condones or endorses their work. Please contact info@stoptheclot.org with questions about this matter.


kyle cluff 2I am sharing my son Kyle’s story for two reasons: To bring awareness to how children are affected by blood clots and in hope of finding others who may suffer from similar conditions.

In August of 2010, my son was eight-years-old, healthy, and extremely active, playing baseball, football and hockey.  That summer he had some high fevers that would come and go, along with pain in his leg. We thought he just had a virus coupled with growing pains. As the summer went on, his legs began to swell and develop red bumps, which we discovered were associated with erythema nodosum (EN), an inflammatory skin condition. After many doctors’ visits and different antibiotics, the doctors finally decided to do an ultrasound on his legs.  The ultrasound showed he had blood clots and after a full body CT scan, the doctors found he had clots down both legs, his lungs, shoulder and also a blood clot in his brain. He was immediately placed in the ICU at a local children’s hospital. After meeting with both Rheumatology and Hematology, they concluded his blood clots were being caused by his immune system getting all “revved up” and attacking the blood. They had no real diagnosis for what was going on with Kyle. The doctors ran many different types of blood tests and scans, but every test came back negative for known conditions.

At the hospital, they gave him three rounds of high dose prednisone (a corticosteroid used to suppress the immune system) through his IV and started treatment with the blood thinner or anticoagulant heparin.  After two weeks he was sent home. The swelling in his legs had almost completely resolved and he was feeling much better. We had to give him twice daily injections of the blood thinner enoxaparin, also known as Lovenox, which is understandably not very fun for an eight-year-old boy, but he handled the injections like a champ. He also had to have weekly injections of methotrexate (an immunosuppressant) to help control his immune system. After almost two years of the enoxaparin injections his blood clots had cleared and we were able to stop them after many months of clear ultrasounds.

Recently, in February 2013, we were told to stop the methotrexate as they felt he was now past this strange immune system attack. Within 2 weeks he began feeling sick with high fevers coming and going and the red bumps returning to his legs. He began methotrexate and prednisone again, but within a month he came home from school with extreme pain in his leg.  The blood clots had returned. This time we took him down to the Mayo Clinic in Rochester, MN. After multiple trips and many more tests and scans, we received the same diagnosis: No known cause. Every parent believes their kid is one a million, but apparently my son Kyle truly is with his rare condition. This round of treatment they have switched him over to Coumadin (also known as warfarin, another anticoagulant or blood thinner) so taking pills is much easier for everyone to manage. Right now, the doctors think he may need to be on anticoagulants and immune system suppressants for his entire life. As an eleven-year-old boy, this is very difficult for Kyle to understand.  We can only hope for new research and answers about his unknown condition.

Today, we take each day as it comes. This fall Kyle will have to give up some of his favorite sports, like football and hockey, as he is getting to the level of play where kids can get rough and the threat of a concussion is too high. He is still able to play baseball and is an amazing pitcher. In fact, he plays shortstop for his traveling team! I am there at every game, cheering him on, but always fearful that a ball, bat, or player is going to hit him. There are still some days where I just want to cry and ask, “Why him?” But, I know I have to be strong for him, although I feel he is much stronger than I ever was at his young age. Take Home Messages

  • Children can get blood clots, too.
  • Swelling and pain in the lower extremities are signs of DVT (deep vein thrombosis, also known as a blood clot).
  • There is still a lot to learn about blood clots and rare blood clotting disorders.

 

Author: L F

11 Responses to "One in A Million: Kyle Cluff’s Story, as Told by his Mom, Stacy"

  1. Amy J. Gallegos
    Amy J. Gallegos Posted on November 17, 2014 at 8:52 pm

    Thank you for sharing Kyle’s story you have an amazing son! I also suffer from rheumatoid arthritis and has had two blood clots in the last year. My doctors have not been able to find the reason why I am getting blood clots but after reading Kyles story I truly believe it has to do with our auto immune disease!

  2. Kristie
    Kristie Posted on November 20, 2014 at 10:28 pm

    Thank you for sharing miracle story! Unfortunately, my son did not survive his blood clot. My son Deveraux was a 19 year old college student who played sports and was very active. He came home from college for Christmas break with what we thought was the flu. He never complained of pain in his leg or swelling. But after battling severe flu-like symptoms for 48 hours, we forced him to let us take him to the hospital because he wasnt getting better even though we were doing everything that the doctor told us to do. Tragically, Deveraux never made it to the hospital. He slumped over in the back seat of our family car, and despite all of my efforts to perform CPR, my 19 year old son was dead. His autopsy revealed that he had a 12 inch blood clot in his calf that broke off and moved to his lung causing sudden death. Since Deveraux’s death, we have learned that my husband and my 11 year old son, Dawson are also carries of the Factor V Leiden deficiency trait that contributed to the blood clot. Our family is working hard to bring awareness of blood clots and the symptoms and causes so that no other family will feel the terrible pain that we feel everyday from the loss of our child.

    • Sandra
      Sandra Posted on December 10, 2015 at 12:58 am

      Thank you for sharing your story. I am so very sorry for your loss. My son, Ruben, is 17 and is currently battling clots. He tested positive for Factor V Liden. We’re only in month 3 since his diagnosis. Do you know if your son had both mutant genes? I am terrified for Ruben and what this all means for his future. I’d love to talk if you don’t mind… Thanks for reading.

  3. GAry boehmer
    GAry boehmer Posted on November 21, 2014 at 3:32 am

    I’m at the other end of the continum re. Age, however, my clots started in both legs after an infection. Long story short I take daily injections of Arixtra. I have consults at UCSF and Mass General. The general feeling was I needed to be on injections for life. I went off medication for nine months but the clots reappeared. Good luck to you and your son.

  4. Maddie
    Maddie Posted on January 16, 2015 at 8:50 pm

    Thank you for sharing your story. I’m seventeen and have Phlegmasia Cerulea Dolen- really big blood clots all the way down my leg. I got this despite my benign medical history, my healthy weight, and moderate activity level. I’m glad people like you are spreading the message that kids get blood clots too! Tell your son he is brave. I also have to inject Lovenox twice a day, and I hate it as a teen; can’t imagine at eleven!!
    Thanks for what you’re doing <3

  5. Jenna
    Jenna Posted on January 20, 2015 at 4:33 am

    It is so good to see a community of people that are going through the same thing! Although this is unfortunate, it is good to see that there is a support group out there!

    I am starting a blog about my experience and would really appreciate it if you could check it out! I want to give people more insight on this by sharing my own personal experience and I want to be able to help others deal with this issue.

    https://bloodisthickerthanwaterr.wordpress.com
    Please do not hesitate to comment/leave feedback

    Thank you so much!!!
    Jenna

  6. Constantine
    Constantine Posted on March 27, 2015 at 9:41 am

    I’ve been through the same thing, in the hospital nearly everyday for a year. I can tell you pumping us with steroids is not the solution, unfortunately it will just come back. I’ve had server operations to clear the clots as they attack my vital organs, including my liver and brain. After a year of investigations and running from hospital to hospital back and forth between countries, it was concluded that I have behcets disease a very rare disease combined with some other stuff. The behecets needs to be suppressed and put to sleep. You should investigate this and don’t hesitate to contact me with any queries you may have. I went through this alone in terms of knowing other cases similar to mine. I have been pumped full of steroids, had blood transfusions, antibodies put in me, flash therapies, therapies with azathioprine and right now am on Chemotherapy, which seems to be working. Please contact me.

  7. Stacy
    Stacy Posted on April 17, 2015 at 1:28 pm

    Constantine, thank you for your reply. As I continue to research my son’s symptoms I have just recently come across Behcets disease and plan on talking to his Rheumatologist about this. It has many of the symptoms, with the bad mouth sores,

  8. rhonda
    rhonda Posted on December 21, 2015 at 2:06 am

    Thank-you for sharing your story about your sweet Kyle. I found out at age 42 that I have a genetic blood clotting disorder and have been so scared that one of my three kids might end up with it too. I have been through everything that he has, yet as a wife and mom. I can not even imagine what it is like to go through it as an active little boy. I want you to know that I am going to be praying for you and for him. You have really touched my heart and I can only imagine that Kyle has a VERY special purpose in this world to have been entrusted with such a difficult assignment at such a young age. I am in my 40’s and I have a hard time many days,.

  9. Gina Cox
    Gina Cox Posted on March 20, 2016 at 3:25 pm

    What a miracle!! I am so happy he is doing so well!! My son, JT had his first blood clot at 2 1/2, they discovered he has 3 genetics factors that cause him to clot, he went thru the lovenox shots and then was on Warfarin, they tried taking him off warfarin 3 times and he would start to clot so he had to go right back on warfarin. Of course as he got older no contact sports, but he loved baseball and played competitive baseball thru high school. The crazy thing, they tried again when he was 15 to stop the warfarin, he will be 19 this summer, he has gone 4 years with no medicine and no problems!! His dr is amazed!! The knowledge is power and we know the symptoms and what to watch for and so does he as he leaves for college this fall he will have to be proactive. So thankful for stoptheclot.org. My brother, Mark Jablonski, is one of the founders and still very involved, he became very passionate about it when JT first had his clot.

  10. Claudia T.
    Claudia T. Posted on March 20, 2016 at 3:35 pm

    Thank you very much for the beautiful story in regarding your gorgeous boy Kyle. I myself was diagnosed with blood clots 3 on my left leg at age 35. Two years later I had 2 blood clots in my lung. Last year I had on my right arm. My doctor prevents me from working out. My body still continues to accumulate blood clots. I’m on warfarin for life. It’s hard to not to be able to do things I used to love doing just like your son Kyle. Only thing thing I do is think positive and always thank God. I’m pretty much the only one in my family that has blood clots, no one else. I do love to walk which I do everyday, only to a certain point. Like I have now several tiny clots in my lungs so I have to take easy. I use inhaler to help me breath when my lungs don’t get much oxygen due to the blood clots. It’s hard. Like I said, just thinking positive and always smiling helps me forget I have blood clots.