Through this blog I’ve had several parents reach out to me specifically about the psychological and emotional toll all of this might have on their little ones who are about to face some of the same things Nora has faced. So clearly now is a good time to share our experiences on this.
By time we got through cast number three, things had changed. In many ways, things had actually become harder, even as we hoped the opposite would be true. When we arrived at the hospital for that third cast, Nora almost immediately started crying and panicking when we were taken back into our pre-op room. Simply put: She remembered. This hadn’t happened before. She was upset and fearful of anyone in blue scrubs or a white coat. We spent as little time as possible in our room and spent as much time as we could in the playroom. Even in that “safe” environment, Nora would hide in the playhouse when she saw any staff come in to talk to us. It was an added stress for all of us that we weren’t expecting. Our nurses told us it was normal, that she was getting to an age where she can remember. We discussed some ‘pre-med’ options for our next cast that we would give her as soon as we got to the hospital to help her relax and, as they said, would make her forget the entire experience afterwards. It sounded like a great idea. However the drawback is some kids come out the other side of anesthesia more or less freaked out and have a tough time coming out of surgery. This doesn’t happen to all kids but some. So it was a gamble and Nora is already a kid who struggles more than most coming out of anesthesia. Things to think about…
We got through that third casting and made it home, but it was becoming obvious to me — after playing back in my head the responses to all the previous casts — that Nora was just not herself for about a week after each cast. She seemed as though she wasn’t trusting of people, very shy and nervous and as though she was just angrier at times, which was not generally like her at all. Now of course this is also very common in 18 month olds who aren’t going through anything. But how were we to know what was normal and what was a reaction to everything she had been through? We don’t have other kids to compare to.
I decided to trust my gut and reach out to a child psychologist at Children’s Hospital who works in the rehab medicine department. She specializes in kids who deal with things like long term medical issues, lots of hospital stays and long term recovery. I met with her without Nora the first time. She was wonderful. She explained a lot of basic child psychology things and how a toddlers mind works, etc. She explained that Nora’s reaction was very normal, but that didn’t mean we shouldn’t try to find ways to have her more prepared and help her through it all. She gave this example: Imagine continually waking up next to a fence and on the other side of that fence was a giant, snarling wooly mammoth wanting to eat you. Of course you would be terrified and would scream. That’s a normal reaction. But we can give you tools to help you deal with that encounter better –how to acknowledge there is a fence there to protect you, how you have the ability to move, etc.
So that’s what we did. We got tools. Her first suggestion was to get a play doctor’s kit –preferably with a saw, since a huge part of Nora’s fear was around cast trimming and removal — a larger soft cloth doll, and one of Nora’s old casts.
We put the cast on Nora’s new doll who we named Scully. Scully, just like Nora, has scoliosis too. We talked to Nora and Scully about getting a new cast and also getting it off. We would tell Scully it was ok to be afraid and that it was a scary process but she’d be ok. We practiced examining her with all the doctors kit stuff, and we used the toy Bosch circular saw — the only loud saw toy I could find –and we practiced taking it on and off. And we celebrated with milkshakes, just like we do with Nora.
At first Nora would say, “No, no!” She clearly didn’t want anything to do with it. It was clear it was a fear of hers. But soon she came around and was eager to ‘go get Scully’ so we could take her cast off and we could play. I really didn’t think any of this would work nor have any effect on an 18 month old. But once again, I was amazed. These kids understand far more than we give them credit for. We continue this play routine often, and it really has helped. Nora is now happy to show you her cast and Scully’s.
When Nora met with the child psychologist again, we did more play therapy with Scully and other toys she had in her office. We also practiced taking Nora back and forth to actual exam rooms and pre-op rooms –other places Nora has a big fear of. Nora was adamant she didn’t want to be in there. She cried and clung to me as best as she could. The doctor practiced examining Scully or putting a cast on or taking it off. After about four or five times of going back into these rooms, Nora relaxed and even became helpful with Scully. It was working! By time we were done, Nora was handling it all so much better.
The psychologist also practiced examining Nora’s cast and tapping on it up and down, shaking it a bit. Trying to somewhat mimic what it would be like when the casting saw would be out. Nora tolerated it but it was clear she didn’t like it at first. I realized at that point that I’ve never patted on her cast, like I would her back. I had always found a way to actually rub or tap her skin for comfort; I’d focus on her head or arms and legs. I always ignored the cast as much as I could. It was then I realized, I too, should tap her cast for comfort, and not to ignore it like we had been doing.
After our sessions with the psychologist and the continued play therapy, we really did notice a difference. It really helped. We got some children’s books too about getting casts, going to the doctor or hospital, etc. These books are some of Nora’s favorites now. She loves to point to the characters’ casts and hers while reading them. We are still working on a few things, Nora still has a tough time with going to sleep at night for about a week after each cast, but I’m hoping with continued work and learning from others we will begin to find ways to help with this as well.
Any parent concerned about how their child is reacting to their casts, braces, surgeries, etc. –or if they are worried about how that first cast will go and would like some tools to try and help — I hope our experiences will give some ideas.
Here’s a list of key things to get:
• Toy doctors kit
• Toy saw – the best one I could find that makes a loud noise is this one
• A soft cloth doll or stuffed animal:
- Use an old cast to put on the doll
- Put an ace bandage and duck tape around the doll or stuffed animal
- You can even have a custom ordered toy with a replicated metha cast. You can order those from Mehta Casted Dolls FanCASTic Friends
- Little Critter: My Trip to the Hospital
- Littleparachutes.com has a ton of books that cover everything from hospital stays, to doctor’s visits, to fears and anxiety.
- Franklin Goes To The Hospital
- Maisy Goes to the Hospital
- There is a new book out written specifically about scoliosis by parents of a child with infantile scoliosis: Cole The Crooked Flower