• Cristi Starling changed their profile picture 1 month, 1 week ago

  • My son is 13. I stopped counting surgeries at 25. I stopped counting nights inpatient at 450. He is a walking talking miracle. His PH is secondary to diaphragmatic hernia.
    I think he has a bit of PTSD over IV’s. As he’s grown, I can sometimes talk him thru cooperation, but other times, even a month ago, it takes several adults holding.
    I don’t…[Read more]

  • Fyi- hydrogen peroxide is just as good at killing germs for toothbrush, surfaces, etc.

  • Besides all the previously mentioned precautions, my son’s dietitian told me our body’s first line of defense is in our gut. A quality probiotic can greatly help your immune system stay strong.
    My son goes to school with all those hacking snotty kids. I have do fight internally;)

  • My son’s PH is caused by lung damage from being born missing half his diaphragm. And missing most of his right lung. With that being said, he’s been in pulmonary rehab weekly for 10 years.
    The benefit is measurable.
    His scars and cut muscles from diaphragm patches leave his posture wonky. So we do a bit for that.
    But the better you breathe, the…[Read more]

  • Cristi Starling posted a new activity comment 4 months, 3 weeks ago

    I’m sorry you’re having such challenges. That would stink to lose the night vent rest support.
    I have a strange suggestion for reflux: DGL licorice. It cured my reflux after years of omeprazole.
    You can get it in tablets so you dont taste it. Sometimes holistic healing beats pharmaceutical.
    • Cristi Starling posted a new activity comment 4 months, 4 weeks ago

      Also, very few CDH kids are as severe as Justin. First, most are left sided. So the heart protects the lungs. Justin was right sided, so at birth, his right side was only the main bronchioles. Second, CDH alone has 50% survival.
      But he is rocking life and won’t let anything stop him. He runs his days with oxygen in a backpack and rests his…

      [Read more]

      • Wow,
        That is really inspiring. I am with oxygen with activity most days and if it weren’t for the team of doctors that listened to me and tested my oxygen levels on exertion and found that they dropped as low as in the 70s sometimes, I wouldn’t know what was going on with my body. It amazes me that it really does take the right team of…

        [Read more]

        • I’m sorry you’re having such challenges. That would stink to lose the night vent rest support.
          I have a strange suggestion for reflux: DGL licorice. It cured my reflux after years of omeprazole.
          You can get it in tablets so you dont taste it. Sometimes holistic healing beats pharmaceutical.
      • Cristi Starling posted a new activity comment 4 months, 4 weeks ago

        Thank you! I recently typed out a response to mom whose dr said they should let her daughter’s PH take her life. She’s fighting, and getting a trach.
        Here’s my response:

        Dr’s here have learned alot from Justin. Not that anyone would admit a mistake, but wrong choices were definitely made. So I pray your path can avoid them. He was 34 week…

        [Read more]

        • Also, very few CDH kids are as severe as Justin. First, most are left sided. So the heart protects the lungs. Justin was right sided, so at birth, his right side was only the main bronchioles. Second, CDH alone has 50% survival.
          But he is rocking life and won’t let anything stop him. He runs his days with oxygen in a backpack and rests his…

          [Read more]

          • Wow,
            That is really inspiring. I am with oxygen with activity most days and if it weren’t for the team of doctors that listened to me and tested my oxygen levels on exertion and found that they dropped as low as in the 70s sometimes, I wouldn’t know what was going on with my body. It amazes me that it really does take the right team of…

            [Read more]

            • I’m sorry you’re having such challenges. That would stink to lose the night vent rest support.
              I have a strange suggestion for reflux: DGL licorice. It cured my reflux after years of omeprazole.
              You can get it in tablets so you dont taste it. Sometimes holistic healing beats pharmaceutical.
        • Cristi Starling became a registered member 4 months, 4 weeks ago

          • Hi Cristi,
            Welcome to the PH forums. I just read through some of your profile and I can see that your son has PH due to a diaphram hernia. VR, one of our other members just told me about this condition but she does not have PH from it. I am so sorry to hear about your son’s PH. Is the hernia something that they are thinking about operating…

            [Read more]

            • Thank you! I recently typed out a response to mom whose dr said they should let her daughter’s PH take her life. She’s fighting, and getting a trach.
              Here’s my response:

              Dr’s here have learned alot from Justin. Not that anyone would admit a mistake, but wrong choices were definitely made. So I pray your path can avoid them. He was 34 week…

              [Read more]

              • Also, very few CDH kids are as severe as Justin. First, most are left sided. So the heart protects the lungs. Justin was right sided, so at birth, his right side was only the main bronchioles. Second, CDH alone has 50% survival.
                But he is rocking life and won’t let anything stop him. He runs his days with oxygen in a backpack and rests his…

                [Read more]

                • Wow,
                  That is really inspiring. I am with oxygen with activity most days and if it weren’t for the team of doctors that listened to me and tested my oxygen levels on exertion and found that they dropped as low as in the 70s sometimes, I wouldn’t know what was going on with my body. It amazes me that it really does take the right team of…

                  [Read more]

                  • I’m sorry you’re having such challenges. That would stink to lose the night vent rest support.
                    I have a strange suggestion for reflux: DGL licorice. It cured my reflux after years of omeprazole.
                    You can get it in tablets so you dont taste it. Sometimes holistic healing beats pharmaceutical.
            • Welcome Christi to the PH Forums! Your son sounds like an amazing PHighter and you, and amazing caregiver! I’m certain that you will receive lot’s of support and information here plus help others based on your own experience. Let me or our other Forum’s Moderator, Brittany Foster, know if you have any questions using the forums. I look…

              [Read more]

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