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Don't Be Afraid to Advocate for Your Medically Complex Child

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I am used to holding my child down during medical procedures. For nearly a decade since birth, she has had multiple doctor appointments and hospital stays to treat cystic fibrosis, and she is a strong little girl. And often there are procedures which are mildly to intensively invasive, such as throat cultures and blood draws. In addition, she must do two or more hours of very physical therapies daily to prevent lung infections.

• What is PTSD?

For me, the disconnect came during our daughter’s second “tune up” – a two-week hospital stay where antibiotics are administered intravenously to clear up a lung infection that has already otherwise resisted general antibiotics.

Before they can administer the antibiotics, they must first install a PICC line, which is a tube inserted through the arm and which goes deeply into the body. Normally, only a local anesthetic and a relaxant is administered. We attempted the normal procedure, but she simply fought too much and the technician decided that a more powerful general anesthetic was called for, and so they put her to sleep.

But this also created a problem for us, as our daughter now expected they would put her to sleep for any invasive procedure, like dentist appointments, throat cultures, blood draws, flu shots and changing out her feeding tube. This is practically unrealistic, but she puts up a very strong emotional and physical resistance to these procedures, and it sometimes takes three of us to stabilize her. This is very hard on me emotionally, and even this crusty old caregiver gets very distressed about it.

When I first brought up the idea of giving her something to relax more during these procedures, I was met with the standard answer that cognitive behavioral therapy (CBT) should help. We tried it, as she was already seeing a play therapist for general anxiety and attention deficit disorder (ADD) symptoms, but it became clear that CBT was not effective enough alone. CBT is a safe and effective answer for mild medical trauma, but what if your child does not respond effectively to it? Why does the technician get to call in more powerful tools, but as the primary care team, I am not allowed to? And more importantly, what tools do I have to circumvent the undermining of my authority as a caregiver that this has created?

I spent a great deal of time researching ADD and fear issues, and searches repeatedly brought up post traumatic stress disorder (PTSD) results. The more I compared PTSD to ADD, the more I realized her everyday attention problems and her medical trauma appeared to be part of the same umbrella and nobody else was making the connection. I spent several months convincing our care team to allow us a pharmacological relief (a sedative) on a limited basis and also working with our counselor to approach her therapy from a PTSD perspective even if she could not diagnose it as such.

Did it work? We have had some great successes. We do feeding tube changes at home and those are going much more smoothly. Overall, her behavior and compliance to parenting has increased markedly. And most importantly, we have increased the amount of loving interaction in our family.

We still deal with challenges like being on time for school, and there is still much procedural anxiety. But by being persistent and reexamining the situation again and again, we were able to make a case to take our care above and beyond “normal,” and in our case, ineffective standards.

And ultimately, we learned how to begin the process of adaptive care instead of reactive care. So parents, don’t be afraid to try something different. Keep advocating for your child, and don’t be afraid to raise your voice, even if it takes a while to be heard.

Originally published: January 13, 2020
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