Medically Complex Child #specialneeds

So after another visit to All Children’s Hospital, my daughter has been labeled as a medically complex child. It is not something that any parent wants to hear, but it helpful when getting diagnoses and getting treatment in the medical field. Physicians are more likely to keep up to date on tests done by other doctors, new medications prescribed by other doctors and work together with other doctors treating the child.

For us, our daughter’s primary doctor, her pediatrician, is local. She gets all the medical records when updated from each specialist. The specialists are located in another area, most at All Children’s Hospital. Because my daughter has been diagnosed with allergies, anxiety, depression, narcolepsy, enlarged tonsils and adenoids, sinus tachycardia, Long QT syndrome and now Postural Orthostatic Tachycardia Syndrome (POTS), doctors must be informed of any medical changes. Even her dentist needs this information.

Children with Complex and Continuing Health Needs BookThe burden has been on us, her parents, to relate this information. Now with the label medically complex child, the burden changes to the physicians. Of course, we are not taking any chances. For example, we carry the list of medications my daughter cannot take due to the Long QT syndrome with us at all times. We remind doctors about that list at each visit and double check with the pharmacy.

Another outcome of my daughter being labeled a medically complex child is that her tonsillectomy will now be done at All Children’s Hospital because they are equipped to handle issues may arise from her other medical problems. As difficult as this label is for us to absorb, in a way we feel safer because doctors will double check or triple check their treatments. Perhaps this is a false sense of security, but for now, it is how we are coping.

Do you have a child who is medically complex? What are your feelings as a parent?

Resource: Children with Complex and Continuing Health Needs: The Experiences of Children, Families and Care Staff

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Connie Roberts

Professional Blogger
Living in the Tampa Bay area, I'm lucky enough to see beautiful sunsets almost every day. Although life can be difficult at times, focusing on the positive and being with my family is what gets me through.

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Comments

  1. {{{HUGS}}} I know it has been a tough road lately for you all. T doesn’t have the physical issues like S does so we don’t have a complex issue in that capacity, but brain disorders of course are there own little nightmare as you know.

    I actually just had a luncheon with St. Louis Children’s Hospital yesterday and it is amazing what the kids hospitals can do to help.

    You know just to yell if there is anything I can do

  2. Madison has a genetic thing that most doctors have never even heard of. Remember our Disney trip a couple of years ago when we wound up in the hospital? I know the feeling you have. It sucks, but it definitely makes you more aware of what is going on and you know the questions to ask.

  3. Oh my goodness. I’m so sorry Connie to hear about all of those medical conditions. However, I think it will help to have this additional label requiring doctors to pay more attention when they do stuff. I’m sending good thoughts your way.

  4. Oh hon… (((hug)))
    I didn’t know you were going through all of this! I’m so sorry to hear it.
    But happy that some of the burden shifts to the physicians now. Despite which, I know you will still be the parent who has all of that info on hand and makes sure you are listened to.
    There are parts of me that can relate given K’s own history of severe allergies – but I cannot begin to understand how much of a relief it must be to have something that lets you say “listen, you have to pay attention here, because this isn’t your normal case.”

    ((((hugs))))

  5. oh wow connie. how awfully painful it must be for you to have to see your child in pain. it is very important that as parents we are our child’s first advocate and i’m sure very helpful to you to now have additional help in the form of doctors. still, the final burden will always rest on you but it must be helpful to know that there are others now to help you? My oldest does not have anywhere near the struggles as your youngest does, but for years we struggled with multiple misdiagnoses until we were able to settle on depression and ocd. its maddening to try to explain to yet another doctor that the meds they’ve prescribed for your child arent the right ones and yes i’m not a doctor but i know my when my child isnt feeling right.
    is that kinda what youre going thru?

  6. Wow, Connie. I’m always amazed at your daughter’s health post. What a blessing to know her issues and have medical professional near you to help out. Hugs and prayers.

  7. My children don’t have any serious health issues. If anything does come up with any of them I hope to be as strong for them as you are for your daughter. ((hugs)) for both of you. I remember my tonsillectomy. Lots of jello and ice cream 🙂

  8. Does All Children’s have a program for medically complex children?

Trackbacks

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