If A Kid Falls Over And No One Is There to Hear It

Jack and I both stayed home yesterday because we’re fighting off some sort of nasty cold. He is fairly better than I am so far, which is ironic considering his suppressed immune system. In between looking mopey and blah, he was eating NON-STOP – just like being on steroids except he hasn’t taken steroids for a week and even then he didn’t eat like he did yesterday. Nothing was satisfying him.

Early in the evening as I was picking up the living room and dining room areas in preparation for a visit from Make-A-Wish, I heard some muffled noises coming from Jack’s bedroom where he was drawing. I called out to ask what was going on but didn’t get a response. A few seconds later, I heard more muffled noise and I asked Jack to use his words because I couldn’t hear him, even as I started walking down the hall toward his bedroom.

When I got there, he was starting to sit up from where it looked like he’d been laying his head against the bean bag chair next to him. Upon seeing the panicked look in his eyes and hearing his heavy breathing, I asked if he was okay. He told me he’d fallen over and couldn’t move his body. His face had landed right in the folds of the bean bag chair and he had felt like he was suffocating. And again, he couldn’t move to get himself more air.

His forehead was sweaty but he didn’t have a fever. Nothing was hurting him, but his heart was pounding with fear.

I called the pediatric oncologist on-call, who asked a few questions about any pains he might be having. She suggested maybe he was dehydrated and said we should have him drink more water and keep an eye on him and his temperature.

The rest of the night he seemed fine, although I did go in and check to make sure he was still breathing before I went to bed for the night. I ran his regularly scheduled labs this morning and the results aren’t terrible – he has an ANC of 792, so he’s not neutropenic, and the rest of his results don’t indicate that he needs a transfusion or anything.

Just…weird and a bit worrisome. My kid was suddenly, temporarily paralyzed and it landed him in a situation where he couldn’t breathe. I can’t even wrap my head around that.

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Suggestions for Psychological Struggles with Pills

About a year ago, at age 6, Jack suddenly developed an aversion to taking pills. He would either gag when he tried to swallow or he would be frozen with anxiety and unable to swallow at all. I was in a horrible state of panic, and it didn’t help that when I called the oncology clinic for help, I was told by our nurse case manager that he absolutely HAD to take his pills because every missed dose increased his risk of relapse.

Yeah, way to help.

The social worker was about as helpful – she recommended stronger discipline.

Um, lady! WTF! My kid is dealing with some massive fear and anxiety here and you are suggesting I discipine him for that??

Up until that point, Jack had taken his pills in applesauce or yogurt. He kept developing aversions to the foods he was taking the pills with, though. We tried peanut butter, as well, and that worked for a bit before it didn’t anymore. I tried crushing the pills and dissolving the pills in liquid – no dice.

We met with the clinic’s child life specialist who had a talk with Jack about why taking medications isn’t very much fun. Jack wasn’t very talkative, though. It stressed him out even more to discuss it. She was very empathetic but had no more success than anyone else. She quickly realized he couldn’t even practice taking pills because it was the THOUGHT that was getting to him, not the actual pills themselves.

Even though she wasn’t successful in helping, at least I felt like she understood our situation better than the other professionals we were working with. I felt a bit better because I knew I’d sought out help, even if it wasn’t ultimately all that helpful.

It got to the point where Jack was going to need an NG tube. We’d tried for hours to get his pills into him one night with no success. We were ALL in tears. We resigned ourselves to going in for the NG tube placement the next day and headed to bed. Thankfully, though, I tried one last bribe and it worked.

What we learned was that a combination of things would ensure the success of pill taking:

  • He had to take his pills in nutella – but with just enough to cover the pills up. No big globs!
  • We had to say that it was time for nutella, and ONLY nutella. “There’s nothing in this spoonful but nutella!” He considered it to be a fun joke.
  • Jack chose where in the house he wanted to be when this occurred – it couldn’t be in the place where he ate dinner or watched shows. He tried sitting in a chair and standing up and decided what worked best.
  • Bribery – I told him he could have any toy he wanted but he had to keep trying his very best to take the pills every day.

Also, Jack really had to be the one to make the decision to do this. Kids going through treatment for cancer (and other treatments for chronic illnesses) lack so much control about what is happening to them. So I had to hold the spoon but not push it into his mouth – he had to tell me he was ready and put his mouth around the spoon while I stood still. This was a way he could take back some of the control and feel less pressure.

Now that we’ve had more time under our belts with this, I’ve come up with some other ideas that might be useful if you’re dealing with this kind of (psychological) struggle.

  • Offer a distraction – it might be easier to take pills if there’s something else to focus on (the school nurse gave Jack a spiral bound notebook to draw in when it was time for him to take his afternoon dose), such as a favorite TV show to watch or book to read.
  • Have another parent or professional administer the pills – and stay out of the room while this happens. Your child may sense your stress and worry, so remove yourself from the equation.
  • Offer a comfort item during the process.
  • Remove other sources of stress and avoid trying to give pills at times of high fatigue. If your kid hates taking a bath, try not to line up a bath right before or after medication time and maybe take fewer baths. If homework is creating more stress and exhaustion, reduce the workload. Jack always had a more difficult time at the end of the day because he was more worn out.
  • Disguise the pills. It didn’t work for us, but it might for you. I know one mom who crushed the pills and put them into melted chocolate, which then became candy. You could also try a smoothie or milkshake – just make sure the ingredients won’t impact the medicine’s potency AND you have to ensure the whole serving is finished.
  • Again, bribery and/or rewards! This doesn’t have to be a toy – it can be an activity, money, or a piece of candy that is granted after the pill is taken. Instead of doing something because I’ve told him he has to, Jack feels like he is choosing to do it in order to get a reward. For instance, we have a list of chores that Jack can choose to do to earn tokens – those tokens can then be collected and traded in for things like movie rentals or gift cards for shopping on amazon (which are things he is particularly interested in).
  • Seek psychological help. Sometimes a psychologist can figure out something that will work based on your child’s emotional state and needs. Perhaps play therapy?

It took us a lot of tears and stress and phone calls and begging to get Jack to take pills regularly, but once we figured out what worked for him and stuck to it, things got a lot better. Chances are even if you can’t find a solution right now, your kid will outgrow some part of the problem and you can try again at a later date.

Hang in there. You can only do your best and no more!

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