Thursday, October 4, 2012

Schooled in (or by) the medical system (Take 1: Sensational Kid)

Posted by kuri, ping, the pinglet, & mini-ping on 10/04/2012
A health update is in order for the two kiddos! Today's segment (Take 1: Sensational Kid) is all about the Pinglet.

Do you know a child that cries and shields their eyes from bright light? Or who can't stand tags or elastic in their clothes or the stiffness of new jeans? Or needs the seams in their socks just so? Or who complains of pain when she eats certain types of foods? And who can have meltdowns of epic proportions when any of these needs aren't met?

This is a child that has Sensory Processing Disorder (SPD). This child's brain isn't able to process sensations the way a typical person does and ends up disorganized/confused when her brain doesn't know what to do with the information coming from a particular sense(s): sight, smell, hearing, taste, touch, and movement. She may overreact (with intensive meltdowns lasting anywhere from 30 minutes to 2 hours), or under react (and then need to raise their level of comfort by crashing about the house, doing handstands or dancing in the living room instead of eating dinner).

I'm not talking about a minor (or even, major) tantrum or meltdown when it's too bright out, or when a child's clothing is the reason they are feeling less than happy. The issues I'm referring to are day-in and day-out, constantly there, and are debilitating to both the child and other family members, as the senses are overloaded minute-to-minute and starts to take over family life.

Well, this is our Pinglet.

In July 2011, after a bout with hand-foot-and-mouth disease, the Pinglet started having meltdowns about burning/tingling pain in her hands and feet (at least 7-10 times a day), being too hot (even when it wasn't) and pulling at--or off--her clothes, which was usually followed by massive meltdowns lasting 30 minutes to 2 hours. When we went to New York to visit in August 2011, the episodes when she cried from pain became more frequent and more intense. This happened even when she was playing or doing something fun. She would tense up her hands and feet and cry, asking me why it hurt so much. I felt paralyzed because I wasn't able to do anything to help.

We returned to Japan in September 2011, and the Pinglet continued to complain about the tingling/pain in her hands and feet. The complaints were so frequent and so scary that I decided to bring her to a pediatric neurologist, where she was tested for various illnesses: Vitamin B12 deficiency, diabetes, RA, shingles, tumors in brain/spinal cord, epilepsy. We even went so far as to have her tested for Fabry's disease, which was the scariest two months of my life, waiting for the results. All the tests came back normal.

A year on, she still complains and cries about her hands and feet (tingling/burning like pins and needles). From what she's told me, it seems to be like the type of pain you would experience after your feet fall asleep and then the blood starts circulating again. It comes in a sudden swoop, and leaves just as suddenly about 15-20 seconds later.

Complaints appear most frequently when she's putting on clothes that "don't feel good" (her own words), especially seams in her socks, "itchy" tags in her clothes, elastic in arm sleeves/winter feet pj's, putting shoes on ("too tight" or "too hot"), loose hair tickling her back. Other triggers are changes in temperature (going from hot to cold, or cold to hot, or becoming too hot from clothing that "doesn't feel good" or is "too tight"). She also complains/cries about bright sunshine or headlights and streetlights at night, and may cry that she can't see and rubs her eyes excessively until she adjusts.  Even when she is doing something fun (like coloring/crafts) and is concentrating very hard on an activity, she will suddenly cry out about the pain in her hands/feet, and then follow-up by telling me she is too hot and proceed to pull at or fuss with her clothing. These bouts of pain with her hands and feet are also signs of anxiety from what I can see, as she will also have a number of meltdowns when things aren't how she imagined they would work out, transitions are too quick, or if she's not able to deal with her emotions, whether they be anger, happiness, or sadness.

I've figured out most of her triggers (stiff clothing (like jeans), clothing that may feel a little rough on the inside (almost like pilling), elastic around the arms/waist/thighs/ankles, seams in her socks, tags, tight clothing). What I've done is to either not put her in those types of clothes or try to adjust things for her while she's crying/melting down about how they "don't feel good." She is getting better about waiting until I can do this for her and may only fuss with her clothing until it's adjusted to where she can tolerate it (She'll say things like, "it still doesn't feel good, but it's OK." and go on her way, for example to the park or the bus for school.) She is also starting to recognize her own triggers, such as a particular piece of clothing, and will let me know that she's decided to steer clear of something so she won't "hurt."
I've worked on steering clear of clothing that I know triggers a reaction in her: elastic, tight-fitting, jeans because of the stiffness), for example. She will wear less comfortable clothing if I adjust it well (i.e. like sock seams or loosening elastic in sleeves by stretching it out so it doesn't touch her skin). I have worked out a longer preparation time in the morning and/or when I have to leave the house if it necessitates a clothing change. This seems to have worked some with smoother transitions. Also things that have worked are distracting her (with TV or music) when she changes clothes.
This daily routine of 7-10 meltdowns per day (lasting from 30 minutes to 1 hour each) went on for over a year, with me online desperately trying to figure out what could possibly be the cause for all the pain that my little girl was going through. And then I came across SPD and a major source of information. I read a book (the SPD bible) called The Out-of-Sync Child, which gave me goosebumps as I was reading along, nodding my head to certain parts of the book, and hissing, "Yes!" when I came to other sections.
I decided that I wanted her to be evaluated for SPD during our visit to New York in August 2012. We went to Kidabilities where we met with a team who evaluated the Pinglet and gave us pointers on how to do in-home OT, since OT for SPD is not available in Japan. The therapists did come to the conclusion that she has SPD for mostly tactile issues (related to touch, for example, with her clothing) and fine motor planning issues (being unable to figure out what to do next when given a task, such as using scissors to cut something out, or having difficulty with pencil grasp). They also think that because there isn't any physical reason for the pains in her hands and feet, she may be experiencing an adrenaline rush when her senses are overloaded, which may send a zing throughout her body--a sort of "flight, fight or fright" reaction. Reading the report and listening to the therapists made me feel like they got her--and might actually have been living together with us since she was born.
Looking back now, I can see various issues that, with hindsight, I should have realized were not typical. The (even today) never-sleeping, constantly moving, inability to comfort herself, excessive need to always be held should have been a clue that all was not right in the world.

At night, we still lie down with her until she falls asleep. Right as she gets comfortable, she'll stiffen, tense up her hands and feet, and ask to be held in a desperate voice (but very particular about how you do it: "Not like that, Mommy, like this")...anxious about going to sleep. I had never thought very much about this, but now think of it as her way of needing to be reminded of her her place in time and space.

My sensation-al girl is a fighter and will come out of this on the other side...all the experiences she's having will only make her that much stronger.

Next post: "Take 2: The World's Next Superhero: Mini-Ping, Super Kidney Boy"

3 of you feeling verklempt. Tawlk amongst yourselves:

Lulu said...

Wow, what a big couple of years you have had dealing with this. Lots of tests and worrying but you must be releived at least to now finally know the answer and be able to work towards helping her.

Noah has a few sensory quirks but not to the same extent as this. It did lead us to have him tested for an ASD when he was around 2 due to speech delay and a number of these "quirks". They said at this stage nothing was definitive but it was scary for us to learn the lack of resources available here in Japan for children on the spectrum and other issues too like the sensory issues Pinglet has.

I know there are a lot of bloggers out there that blog about issues like SPD and sensory processing issues such as this too which might be worth checking out.

Big hugs to you and her! x

kuri, ping, the pinglet, & mini-ping said...

Thanks for your support as always, Lulu! :)

NyNy said...

Wow, I've never heard of this disorder before but it did open my eyes to be more aware of it.

It must be a lot for you to deal with. Not sure what else to say >_<


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