Sitting Woes

Thursday, April 2, 2009

Cayman has always been a very happy baby. The only times we have heard her cry was when she was hungry, and even then it was just a crabby whimper.

But over the last couple weeks we have watched our easy going girl go from happy to upset, and now devastation. This past week at her therapy appointment, Cayman cried the worst I have ever seen her cry. Actual real tears for the first time.Going on about a month now, Cayman has been physically resisting us when we put her in a sitting or crawl position. She is more cooperative if she sits in her BeBe Pod but even then it's not long until she is fussing again. It's very unlike her to be so unhappy.

For Cayman's birthday, her Great Aunt Linda and Uncle Martin got her this mirror. She went nuts over it, grabbing at it, staring at it, leaning forward to touch it with mouth wide open in wonder {just as you see in the picture}. But not anymore. If we sit her in front of it she would soon fuss just like she does at physical therapy.

Do you remember back in January how Cayman was sitting unsupported? It was never more than a few seconds at a time but still, she had proven herself to have the strength. It was more of learning how to balance herself was the issue.

About a month ago, Cayman stopped trying. Every time I put her in a sitting position she would fuss and crab, and push against my hands, trying to lay back down. She would get so upset that I just did not have the heart to keep pushing her so I backed off. I left her therapist do the "dirty" work every week. I worked with Cayman some at home, but precious little. She would just get so upset and I did not want emotional harm to come from the therapy exercises than the good we hoped for.

So every week, for the past month, much of our hourly therapy sessions have consisted of trying to figure out why Cayman is so upset. Her physical therapist, Jodi, has continuously checked her spine, muscle flexibility, hip placement, etc. It all seems just fine.

We began to put events together.

Soon after she got her helmet is when I think this all started. It was never consistent though. Sometimes she was very cooperative and happy. Overall, I think she has adapted well to the helmet. She sleeps in it just fine, it has never caused her to be up at night or be fussy during the day, just only when she is sitting or put in a crawling position, so why would we ever think it was the helmet that could be causing this. Besides, the Orthotic clinician said a child usually gets so acquainted with it that they forget they are even wearing it.

Cayman has needed to return to the clinic twice within the first month of wearing the helmet to get it retightened. We had hoped the loosening of the helmet was because it was already beginning to produce results in her head shape, but it's not. It keeps coming loose for two reasons:

  1. Her shunt is slowly draining the fluid from her head faster than her body is making it. It's so slow though (0 .5 cm over a 3 month period) that the Neurosurgeon wants to leave it at its present valve setting since the shunt is functioning properly. With the many shunt revisions Cayman has needed in the past, her Neurosurgeon likes to be extra cautious and not mess with it if nothing is wrong. However, this may lower the effectiveness of the helmet in reshaping Cayman's head. But the health of her shunt most certainly takes precedence over any cosmetic changes. So Cayman's head is slowly shrinking still, which does explains why we are seeing some head reshaping but it's not from the helmet.
  2. Cayman's head shape makes it terribly difficult to anchor the helmet onto her head so it's effective. Below is my attempt of drawing you a picture to help explain what I mean by this.
    The black outline is the shape of Cayman's head looking from above down onto the top of her head. The pink outline is the way her helmet fits around her head. The two arrows show the points where the helmet fits the tightest. The idea of the helmet is it places pressure at those points that stick out the furtherest, inhibiting them from growing, while the lower areas that are not under the helmet pressure can grow to meet up with the higher points. So in Cayman's unusual shape, her highest points are located on the the same side and that is why it is very difficult to anchor the helmet easily than if it was working with two points diagonal from each other. To compensate for that, the clinician had to tighten her helmet so it fits as snug as possible over those two points {arrows} but still without causing irritation.
When we took Cayman to her routine appointment {every 4 months} with the Naturopath this past Monday, the body scan revealed she is having headaches. The exact cause could not be identified. It could be from the helmet, or teething, or the sinus junk she gets while teething. Either way, we learned something valuable that has helped us understand why Cayman might be so upset.

She still rolls around, all over, and most of the time is happy while doing that. So I thought about that for a minute. I guess when we have headaches we are most comfortable being able to lay our head down, so that makes sense why she would not want to sit up.

At her birthday party when she sat in front of the mirror and played so happily, she was not wearing her helmet.So yesterday evening, Mike and I decided to take her helmet off for awhile and see what would happen.

Have a look.

Getting into position.

Ok, she's not crying yet. In fact, is that a little smile?

She sees her toy and reaches for it. I can't believe she's not resisting.

Look at the big girl!! Contrary to the depth perception in the picture, she is sitting all by herself, not leaning up against my leg.

Still sitting.

Still sitting.

Still sitting.

Still sitting.

Still sitting.

She's starting to fall over...

And she's down!

For about 6 seconds Cayman sat completely by herself!! She didn't cry, she didn't resist. She was happy and content...her usual self.

That sure does make us feel 99.9% sure the helmet is the cause to her sadness.

So what is the solution?

We don't know for sure yet. We're brainstorming all the options to find the best one.

In the mean time we are giving Cayman extra long breaks from her helmet and Mommy is soaking up every minute of cuddling her baby's head.

12 Showin' Comment Love:

Sherri said...

Go Cayman! She just knows exactly what she wants :)
Just something to keep in the back of your mind...Our neurosurgeon (and Matthew's too) does not recommend using helmets. He says, "they do not usually help, especially for children with shunts." I really, really trust his opinion. Hope I'm not being too snoopy :)

Anonymous said...

I'm glad you trusted your gut and tried it. I'm sorry that it's the helmet though because I'm sure that is frustrating. I'm sure you'll figure out a solution! BTW, you are so adorable! :) We always comment on Cayman and forget about her beautiful Mommy!!

Jennifer said...

Ok, first of all, that picture of you snuggling her is the sweetest thing I've ever seen. :)
Second...she is SO big to sit by herself for that long! Yay! :)
Have you considered (or can you) taking her to a chiropractor? I know they are helpful with headaches and stuff. I guess if it's just the helment, then she doesn't need it..anyway. I love chiropractors, so I always go that way. :)
Love the pics!!

Sarah M said...

How awesome that you guys are so in tune with Cayman and so dedicated that you can figure out what has been bothering her. I hope that you can make the changes you need to so she can feel better. That was so cool to see her sitting for so long!

Anonymous said...

Yay Cayman!! I imagine this causes you much frustration. Knowing what is the cause of her unhappiness, but feeling the need to follow the doctor's orders regarding how often to wear the helmet. We will be praying for you.

Go Cayman!!

Anonymous said...

What a big girl sitting!!! Great job.

Food for thought, we actually stopped using the helmet for Tyler for that same reason. He was completely miserable with it on and it was hindering his PT sessions. We used it really only during nap time. Our neurosurgeon felt it was more important for him to sit and have belly time than for his head to "maybe" reshape. He was never 100% convinced they work. Just a little something to think about.

LOVE LOVE LOVE the picture of you 2snuggling at the end. Very sweet.

The Soldatke family said...


Good sleuthing!! I'm so glad you figured it out! What a hard decision to make, to use the helmet or work on sitting. And if I understand helmets correctly, unless you wear them all the time, they aren't as effective??? I don't remember, but that must be frustrating. So glad that you know that she still has the ability to sit, and that mirror will be great motivation, since she loves it so much.
I hope you figure it out!

Oh, and I can't believe Cayman's hair is getting so long, you know, once she gets some bangs and long locks, no one will ever know what shape her head is! (just don't let her find a pair of scissors by accident when she's older!)

Beth said...

Thank goodness it is just the helmet!!! I hope you guys find a solution soon!!!

I love the picture of you two snuggling - nothing sweeter!!!

Kacey Bode said...

BEAUTIFUL picture of you and Cayman, the black and white one, so sweet!!

Poor baby, she's been having headaches, don't you wish they could tell us what was wrong : ( Great job in finding out what was happening.

Cayman looks so big sitting up by herself! YAY CAYMAN!!!

Jennifer said...

You are such an awesome mom! You are always so in tune with what Cayman wants and needs.

Look at Cayman sitting! That is so great!

Elijah's head had/has kind of a similar shape as Cayman's(judging by your drawing), except mostly in the back. His neuro said that it should reshape by the time he is three, so we're hoping it does. So far, so good! Our neuro is another that doesn't like to use a helmet on a kid with a shunt unless he has to. He said at Elijah's 1 year check up that he was pretty much too old for a helmet to help much anyway.

I know you all and your doctors will come to the best decision for Cayman. I'm so glad you figured out what was going on with her. I always worry when Elijah is abnormally fussy with no apparent cause that he might be having headaches. I wish they could tell us what's wrong.

Lisa said...

Wow....I am going to call you Sherlock Holmes from now on! You really got the bottom of this mystery :)

I am glad that you are giving her some breaks from the helmet, because the fact that it is giving her headaches is going to hurt her developmental progress.

By the way....I noticed the therapist putting Cayman's feet in a bin of something....Elisabeth's therapists do that too! Usually pop corn kernals or things like that.

Tyler said...

I am happy to hear that you figured out what was making Cayman so upset. It would help us parents out if only our kids could tell us exactly what hurt and where. Then we wouldn't have to jump through all these hoops and second guess ourselves.

The 2 of you look adorable cuddling in the last picture and way to go Cayman for sitting up all by yourself for 6 HUGE seconds.

Diane, Tyler's mom