I m feeling a little discouraged after my sons diagnosis Everyone around us...

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I'm feeling a little discouraged after my sons diagnosis. Everyone around us has no idea what we are going through and my sons friends don't wanna play with him. Their parents think their children can catch this, which they can't. We were in the hospital for 2 weeks cause he had to do 2 treatments of IVIG and he fevered so weren't able to go home. Now that we're home, I feel like our worlds just changed. My daughter comes home saying she hears parents saying nasty things about jojo. I'm kinda lost and wanna say some hurtful things but I'm an adult and don't need the drama. He has scar tissue around his heart and he is on high dose aspirin. I have to go to the school and give him the 6 pills where his nurse refuses to give it to him. So any advice would be helpful. This army base has some closed minded people and are just rude :/

%d comments
  • First, I am so sorry people suck!!!!

    Second, time to send the school some educational i formation on KD... he might be the first child they have who got this dx, I know our daughter was and we had to educate as well as go through the emotional roller coaster of this disease!

    Third, talk about it to people around u his friends parents ur family talk about KD and about the isolation it has caused your family the reality is that it's lonely to be a KD parent... it doesn't get better by not acknowledging the reality of this dx, thecreality is that this illness is scary and the it scares families forever, every time the feel unwell it takes u back mentally to that scary place and timevwhere everythibg was up in the air.

    Fourth, hang in there come and vent on these groups the support and love is there even if it's virtual ;)

  • I am so sorry, JoJo is perfect! I totally understand, I have a son with Autism & have experienced this a lot. I learned to ignore them & surround him & family with positive supporting people. It's heartbreaking for JoJo on top of healing. Hang in there & keep focus on him healing! So sorry you guys are going through this, it's so unfortunate people are that rude.

  • Everything Joanna said! Great advice for awareness & advocating for him!

  • Jojo is autistic ❤

  • ❤️ my son that had KD we call him JoJo or Joey!

  • This is my jojo. He has high functioning autism. He also has KD :)

  • Prayers to your son and your family . It is a scary experience. Just focus on your family's health.

  • He's soo cute! My oldest is 10 w HFA. My middle KD kiddo is 7, had 2 IVIGs as well. He had aneurysms, his heart is good w some scaring in right coronary. But awful allergies & now being referred GI Dr for bad reflux, cough, sensitive tummy& possible eosinophilic esophagitis. We are 3y post like today!

  • Wow!..I cant believe the adults around you are acting that way! I would have a hard time keeping my big trap shut!...but...maybe if you could do a little to help spread awareness there...like just hand out some of the awareness posters, maybe keep some in your car and give them out at your local schools nurses offices, your local doctor offices, on a community bulletin board and even ask friends or family members to pass a few or hang some on the bulletin boards in their workplace breakrooms. Maybe people will be a little more understanding and compassionate once they learn a little about kd

    I would definitely speak with the school principal also. I even asked our principal to do a "red tshirt day on jan. 26th for kd awareness day.

    Be patient hard as it may be. Keep your head up and take care of yourself and your family.

    Hoping the best for yall!❤

  • My heartbreaks for you!

    First and foremost, remind yourself how lucky he is to have been diagnosed in time & correctly so let that give you strength. I would gift classmates/other kids w a heart pencils attached w a note that says, "JoJo is a KD survivor, a kid's leading heart disease. Learn more about KD at www.kdfoundation.org. He'd love a playmate - golden rule - treat others as you'd have them treat you." Hopefully that message will hit the parents between the eyes. If not, then you know they're not people you'd want your kid playing with anyway. If you need pencils, message me.

    You have the support and love from the KD community

  • Our son was diagnosed with KD 4 years ago and recently with HF ASD too. Looks like we have a lot in common. Our son doesn't have a lot of friends and has suffered from people not doing their research and making assumptions. Have you filed a complaint about the nurse? That is ridiculous.

  • This is our son Rush.

  • I remember going through this a bit too. Even taking my daughter to the grocery store everyone gave her awful looks and whispered about her. I was constantly telling people that she wasn't contagious.

    The best thing I did was write about her progress on my wall in the most positive way I could. I would say what her diagnosis was, all the testing, treatment and how frustrating it was as a mommy to see people cringe at your beautiful helpless baby and spread their fears and rumors. I always said she wasn't contagious.

    Eventually people started understanding it, asking questions, spreading the word that she was so strong and brave and NOT contagious. To this day I update on her doctor appointments because so many of my mommy friends are following her progress and supporting us through it now.

    I also tell all her teachers, the school nurse and her friends parents from school. I'm always talking about what a trooper she is.

    No one ever really understands exactly what we're going through, but the efforts some of my friends have made are so worth the effort I put into it. Just recently (nearly 3 years later) one of my friends bought a book about inflammatory diseases and spent the afternoon asking about her condition.

    Good luck. Hugs to you and your son.

  • Remember, what people don't know about or understand when it comes to children and illnesses can scare them as they don't want their child to become ill.

    That's where you need to educate them, leaflets, schools, third parties anyway you can to help them understand that it's more than ok to be around your child. Good luck and I wish you all well xxxxx❤xxxxx