Parenting Children with Special Needs Blog

11/29/07

Opting Out of Medical Procedures

Posted by : Julie in Parenting Children with Special Needs Blog at 09:04 pm , 741 words, 187 views  
Categories: Ear, Nose, Throat


An interesting dilemma that parents of special kids face is if or when it’s the “right time” to do certain medical procedures. Depending on your child’s challenges, you may have some very valid reasons for not pursuing a medical procedure that most parents would have their child undergo.

Right now, braces are the medical procedure we’re opting out of. LuLu’s teeth are incredibly crooked. In fact, she may not have enough space for all of them to come in. However, we’re opting to wait at this time, because we can’t imagine adding one more source of irritation, discomfort or stress to our already maxed out kid.

Our dentist understands our decision, but I’m not sure he agrees with it. The orthodontist gave us a reprieve last July, saying her mouth still needed to develop and she needed to lose a few more teeth. However, we got a call recently that now would be a good time to start all of this.

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It is not a good time to start all this. So we’ll wait.

When LuLu first arrived home, we didn’t wait. Our pediatrician sent us immediately to an ENT because even though LuLu’s tonsils weren’t infected, they were enlarged and made it hard for her to breathe when laying down. The ENT recommended we get the tonsillectomy done right away. So, less than a month after she arrived home, LuLu was having her tonsils removed.

I knew nothing about trauma then. What I did know was that we had a horrendous experience. I recognize it now as total dissociation. She didn’t sleep for nearly 30 hours straight and wouldn’t except any liquids from me. The nurses insisted that the liquids be chilled, because of the bleeding and the swelling. And LuLu was used to the scalding hot bottles that many children coming out of Chinese orphanages received. LuLu’s survival skills kicked into high gear and she was refusing everything, until I was able to slip her some grits, and they made her thirsty enough that she drank the required lukewarm water for us to go home.

Still not realizing that I should have questions the wisdom of more surgeries, our ENT talked us into tubes in her ears a year later. She probably did need them, although the vast majority of her ear infections were ones she suffered in China and has the incredible scarring on her eardrums as evidence. This surgery went smoother, but she still remembers it clearly as a major traumatic event in her life. “They took me away from you Mom and left you waving at the window, like my birth mom…”

Now I’m not advocating that children who have been traumatized should forego important medical procedures. I’m just saying that we may need to look at things in a different light. In the beginning, I approached LuLu’s care the same way I did all the other children’s care. If the doctor said it needed to be done, then it needed to be done.

When LuLu had barely turned five she lost her front tooth. I realized it was a bit early, but it wasn’t until we went to the dentist next that they took x-rays and discovered that she had an extra tooth that had prematurely pushed this one out. “It has to be removed,” the dentist decreed.

This time I asked questions and got more opinions. In the end we did remove it, because it did need to go and was only going to wreak havoc later. But we also had detailed discussions with the oral surgeon’s entire staff about how the procedures were going to go to promote attachment and not add to her trauma. They were apprehensive at first, but wonderfully accommodating. And the whole procedure was smooth sailing.

At times I try to make myself feel guilty for not jumping into braces. I supposed some might think it’s a matter of finances. (And they’d be right that we really can’t afford braces right now.) But that’s not the reason for waiting. I weigh all LuLu’s other needs against her need to have the best chance at healing or improving from her disabilities. And a young adult child with solid emotional and developmental health and crooked teeth…well, that’s a smile I’d declare perfect!

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Comments, Pingbacks:

Comment from: mmarschner [Member] Email
"And a young adult child with solid emotional and developmental health and crooked teeth…well, that’s a smile I’d declare perfect!"

Yes, indeed!
PermalinkPermalink 11/29/07 @ 21:46
Comment from: fenyimom [Member] Email
oh man, I did the same thing with my daughter's cleft palate. She was 3 yrs old, had been here for 4 months, didn't have a clue what was going on. And if there is one word of advice I would give to any parent of a child undergoing surgery - JUST SAY NO to versed. This is a temporary amnesiac that they often give kids to help them calm down when they go into surgery. My daughter has had 3 surgeries, taken this stuff 3 times, and I only just figured out that this was what was making her absolutely crazy afterward. JUST SAY NO TO VERSED!!!!!
PermalinkPermalink 11/30/07 @ 04:11
Comment from: NCOZADD@aol.com [Member] Email
For us, it was "darned if we do, and darned if we don't." with our two older ones, who came to us ith rotting teeth. Our daughter was much easier, and needed just two visits for relatively minor procedures to remedy her issue.

Our son, however, whose issues were much more elaborate and critical, needed a "sleep mask" and major oral surgery that took hours.

Whether that contributed to his RAD, who knows, but it certainly worsened his trauma and loss.
PermalinkPermalink 11/30/07 @ 08:24
Comment from: John [Member] Email
Julie, I think you are wise to put where you daughter is at before the time frame the doc or dentist is used to using. I have seen a lot of adults who did braces in their 20s who have great looking teeth. John
PermalinkPermalink 11/30/07 @ 18:19
Comment from: Chromesthesia [Member] Email
My grandmother was around 60-70 when she got braces.
So it's good to wait if you think that is best for her and won't add to her trauma and stress.
PermalinkPermalink 12/01/07 @ 19:18
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