Mended Little Hearts Open Forum

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  • 1.  CHD & ADHD/ADD

    Posted 08-09-2017 11:08
    Hi, I am curious about CHD and ADHD/ADD. How many of 
    Your kiddos have ADHD/ADD and do you medicate or use non-invasive methods to help?   I have a teenager and am looking for some support.  He is on a 504,but there's really no specifics outlined for him. Last year, we struggled so much,and he received poor grades.  It also puts a huge strain on our family.  All my non heart families that have teens with this, try alternative methods and then in the end, medicate them,and their lives change for the better!  I hate the thought of medication, not only because of his CHDS, also the fact, that he has to learn life skills to conquer and cope with this all of his life, and I don't want medication 
    to necessarily be the crutch for him.  High school is a vulnerable time for kids, and I want him to feel confident and successful. Would love the feedback and would love to start a support group!! 

    Cave Creek, AZ 


    Kelly Forkasdi-Armijo 

  • 2.  RE: CHD & ADHD/ADD

    Posted 08-10-2017 12:17
    Hi, I have a 10 year old with the same issues. Because of the severity of his CHD's he is not able to take any medication for ADD/ADHD, I am unsure of how to help him in class either. He also has a 504, but we struggle completing assignments and even sitting down in class. If anyone has any ideas or suggestions, I would love to hear them! Thanks

    Kristin Farris
    Ladera Rach CA
    (949) 742-5468

  • 3.  RE: CHD & ADHD/ADD

    Posted 08-11-2017 11:07

    My son has TOF and his behavior got really bad to the point he got suspended 8 times last year. He has an iep and he gets good grades but was always getting suspended. I too did not want to do medicine. We have him in wrap around services getting therapy and finally decided to ask about meds. The neurologist spoke to the cardiologis and decided to put him on add medicine. He has done fine with it and his behavior is so much better. Now we can actually calm him down and talk to him where as before he was just to upset to listen. Now I think we can get through to him and he can acyually learn the way to be have and eventually take him off the medicine. He hasn't had any problems with it though he is on th a very small dose.






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  • 4.  RE: CHD & ADHD/ADD

    Posted 10-31-2017 12:58
    My daughter has HRHS but is only 3. I know this is an area I worry about over her future. However, I also work with 504 families at the school I teach at (It is online so parents are doing most of the interventions). I have no idea what is in your student's plan but here are some ways that some of our families have coped with ADHD.

    1. Your student may need a routine break scheduled in after so many minutes. In a brick and mortar this could be set to a vibration timer and he/she can use that to let them know to close their eyes, sing their favorite song in their head, tun out the world and then, when it goes off again, can trigger student to refocus on surroundings. Bathroom breaks and drink breaks can work for this too.

    2. Provide external sensory stimulation such as an exercise ball for a seat, a purposefully wobbly chair, even fidgets (though not the spinners really) like a sponge or interlocking rings. Something that is silent but can provide some sensory stimulation.

    3. Get them active. More active students tend to focus better due to better blood flow to their brain. Schedule in breaks in which he can discreetly do jumping jacks or some other activity that gets the blood pumping.

    Carolyn Stock
    Sidney OH
    (724) 496-2802

  • 5.  RE: CHD & ADHD/ADD

    Posted 11-01-2017 01:58
    Carolyn, thank you for the information! 


    Kelly Forkasdi-Armijo 

  • 6.  RE: CHD & ADHD/ADD

    Posted 11-01-2017 12:01
    Please forgive me if you've already considered this, but my son is 9 and has ADHD-like behaviors--many single ventricle kids do. Impulse control is a big thing for many heart kids. Sometimes, our kids are diagnosed as having ADHD when they actually have very high anxiety or PTSD instead. Just a thought. We're considering putting my son on anti-anxiety meds, but it really is such a tough choice and there are convincing arguments on both sides. I guess you just have to look at how much it's impacting his quality of life. I know some go on ADHD meds as young adults and when/if they have more control over their lives and work as adults, they take themselves off the meds because they have learned well enough how to manage it without the meds. good luck!