This whole scary week has been a reminder that our lives are very different than they once were. A reminder that KayTar's sensory quirks are not isolated issues, but they come into play in a way that can be very serious when combined with an illness. A reminder than when BubTar brings home a cold, it can end up being much more serious if and when KayTar comes down with it. The fact that she feels under the weather ramps up her food aversions and it turns into a total refusal of all foods and most liquids.
For most of the week, we haven't even been able to open food packages in the same room with her, much less eat in front of her. If she even saw us open a package, she would start heaving. It is so surreal. I've never seen anything like it. In the hospital I had to hunch over my food tray in the corner, so she couldn't see the food or the fact that I was eating. There is no tempting her with "treats" because sensory aversion trumps a treat every time. We tried everything. Popsicles were evidently invented by the Devil, just for torturing KayTar. Gatorade? No. Sprite? No. Water? No. Juice? No. Milk? Vomit. Big cup? No. Straw? No. Bottle? No. Syringe? Vomit. So a simple cold can become a hospitalization for dehydration, just because her senses are on high alert and she can't accept anything. We also learned that KayTar does not look as ill as she is in actuality. She can pass a clinical evaluation with flying colors, but the labs will tell a very different story. The general signs of dehydration were not exhibited, even though she was. She was still able to make tears, her tongue never felt dry, she passed the little pinch test. The only thing that gave us a clue was decreased urine output. It was quite a learning experience for us all. We're still unsure why she has had 3 episodes since Sunday. We've never had them closer than 2 weeks.
I know there are so many parents and children out there dealing with much larger medical challenges, some are life threatening and will be a life long struggle, and this is small in the grand scheme of things. I just didn't realize until this week that KayTar's sensory quirks could translate into a real medical problem.
Taken a few minutes after her labs were drawn.
Does this kid look sick to you?
18 comments:
Kyla, you astound me. You're so incredibly strong and then you call attention to parents dealing with larger challenges than your own. I think most people would (I know I would) consider a child in danger of dehydration a very big challenge indeed.
It is strange that KayTar doesn't have the normal signs, but I'm glad that you know that and you can be armed with that information if (heaven forbid) it should happen again.
I'm glad to hear that KayTar seems to be on the mend. Take care of yourself as soon as you can.
What a frustrating experience! (And ditto on everything notsosage said.)
I'm so glad to read the good news. I hope you're feeling better, too.
So glad that she's finally feeling a little better!!! Yeah KayTar!!!!
Refresh my memory...is KayTar getting therapy through Early Intervention? If she is, ask if they can add occupational therapy to work on sensory issues. Things that were recommended to use...bins of rice, beans, sand, flour, work up to playdoh and clay. a koosh ball...toys with different textures/fabrics. If there is oral aversion as well, try and find a feeding clinic, use a z-vibe, tooth brushes in mouth and on skin...check into the Wilberger protocal. If there is an aversion to motion, or if motion helps calm her, build a platform swing in your house, see link (http://www.infantilespasms.com/brocswing.htm).
I could probably come up with more...you may know about all this stuff already, but thought I would mention it. Google SID, sensory integration disease, for more info.
Good luck
Jen
I'm so glad to hear her system is finally stabilizing after such a rough time.
I hope these things get better for her with time. I know that little kids are much more prone to electrolyte imbalances with dehydration than older kids. That's certainly been our experience. So I hope hope hope that this turns out to be true for KayTar, too. Always hoping, right?
Best wishes for a calm week, and no jinxing!
I'm sorry that I haven't been around this weekend, and I am really, truly sorry that you are having such a bad go of things lately. I wish there was a way that I could help. If there is, please let me know!
In the meantime, sleep if you can!
I'm so glad that NOW you know, if she looks okay you might need to delve further with the blood work. That is an excellent thing to know now, rather than later.
You are not alone in the sensory quirks causing bigger setbacks than the illnesses themselves. Braeden does the same thing. Post nasal drainage makes a cold look like a flu because it causes him to gag and barf CONSTANTLY! And eating with our food shielded is a fine art. IT SUCKS. I'm sorry you know the pain of having to do that.
You guys are in my thoughts Kyla. Always.
Also.....small hand slap for giving credit to those whose kids have 'bigger issues'. You are allowed to wallow lady! Kid issues are big no matter what, to the people going through them. :-)
Wow, you've had a tough week.
I love her cow PJs. (sheep?)
I agree... weird that she does not look sick, but is. You sound like you are very good at reading between the lines and learning (meaning: really absorbing the info that matters) as you go along.
I'm very glad to hear KayTar is a little better.
But I can well imagine how hard it is to learn about yet some more and scary difficulties for her.
I just hope things will be a little easier on her once she is older -
know thats no consolation and no real reassurance, though.
All my wishes,
Hannah
(sorry, forgot to sign the comment to the post before)
Whew. Enjoy your bak-to-normal, dear Kyla.
Jen: Yes, she is getting OT, but she is the weirdest "sensory kid" that anyone has worked with. Normal sensory quirks aren't universally present. She loves things other tactile averse kids hate...like brushing her teeth. She could brush her teeth for hours on end. Everyone comments on how odd she is in the realm of sensory oddities. Those things they use to desensitze kids like her? She already LOVES them. Its weird.
DDM: I knew you'd sympathize with the food shielding. I felt awful for BubTar...he'd wander into KayTar's line of sight with a fish stick or something and we'd all yell "No!! GO!!! OTHER! ROOM!" as KayTar starts the gagging. I suppose he'll learn. *lol*
Thanks for the support guys.
She looks beautiful to me.
I'm so, so sorry for how difficult your week has been. Your strength amazes me.
She looks gorgeous and happy and alert... no wonder the doctor's didn't think she was as sick as she was. I'm glad things are looking up now :)
I am amazed at the strength of your entire family...
I am so glad KayTar is on the mend... And what a road you are on...
And you are so right... She looks beautiful and the only giveaway is her wee blue arm wrapped for the IV...
Kyla, we've dealt with all of those issues you've mentioned for seven years now and it still astonishes us how a little stomach bug can put Ben into the ICU quicker than pneumonia. There's no telling how many diapers we've weighed through the years when Big Boy has gotten sick.
You and the hubs are doing an awesome job. And always remember you have a great deal of support out here in the Blogosphere.
Man oh man. As if this isn't hard enough without adding the whole "diagnose a healthy looking kid" mystery thrown in there. Bryce had some sensory issues that weren't even remotely as intense as what you're dealing with, and that felt very difficult and overwhelming - I can't even imagine dealing with it at this level. I want to say, "poor Kaytar, poor all of you" but that seems so patronizing and condescending, especially considering how gracious and brave and patient and calm you are through all of this.
Kyla, you and your family are in my thoughts, Christy
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