Sensitive to Everything (2): Storminess, Medications, Change

Bikeok Autistic children are slower to integrate multiple stimuli than same-age children whose development is more typical, according to a recently published study in Autism Research. Electrical activity in the brain was measured in 17 autistic children ages six to 16 and in 17 'typically developing' children while they watched a silent movie and were presented with unrelated auditory and tactile sensations. The researchers then

 

…..summed the responses to the single sensations, as measured by high-density electrophysiology, and compared them with responses to the combined stimuli. The combined responses of all the children exceeded the sum of the single responses — an indication of multi-sensory integration. But the autistic children had less pronounced differences, the researchers said, suggesting their integration was less effective.


As well, the multi-sensory integration took place within about 100 to 200 milliseconds of the stimuli in the typical children, the researchers found, but only occurred after about 300 milliseconds in the autistic children.

 

It's not that autistic children can't integrate different types of stimuli, but that they have difficulties doing so.

While the study doesn't address whether this difficulty in 'sensory integration' can be correlated to behavior issues, I don't think Jim and I are alone among parents of kids on the autism spectrum who think, there is a connection, and we're not necessarily in need of a research study to prove it.

I wrote a while back that Charlie is 'sensitive to everything.' 'Everything' meaning sensory stimuli including sounds, textures, smells, tastes, how his favorite little items are set on the floor, the barometric pressure, what Jim and I wear and whether or not a shirt is tucked in or someone's hair (mine, that is) is pulled up in a ponytail, when Jim and I return to work after much of the summer off. Being the creature of intensely guarded habit that he is, Charlie would prefer, or is inclined to think he would prefer, that things be always the same.

But oh what an overly, entirely OCD world we'd inhabit then!

And too, there are small changes that Charlie is not so aware of, but that nonetheless affect him, in a physical sense. One of these would be, or might be—because it's not really possible totally to know what causes Charlie to have two bouts of neurological storming as he did for the past 24 hours (of me writing this post)—a very small change in one of the four medications that he takes.

Charlie's neurologist has wanted to see if he does not need to take all those meds. It's never entirely clear how any one medication is affecting, helping, hindering: Giving psychiatric, antipsychotic, and anti-epileptic medications to a minimally verbal autistic teenager who isn't yet able to type or express too much verbally is a fairly daunting challenge. One is as frequently likely to be wrong as right, and sometimes one is both at once.

After our June neurologist visit, we attempted to lessen the amount of Zoloft Charlie takes. He's taken Zoloft for over five years and, now that he takes a number of other meds, it's not so easy to figure out what is doing what. Frankly, it's often seemed that Charlie was taking Zoloft more out of habit and because of our worry about what might happen if he didn't. So back in June we halved his dose.

After two days, charting a notable increase in anxiety and OCD fixativeness in Charlie, I called the neurologist's nurse and Charlie went back to the (relatively low) dose of Zoloft he's been taking for years.

Monday, following Charlie's appointment, we gave Charlie a half-pill less of Trileptal.

Tuesday morning, 'contained' SIB in the white car.

Wednesday afternoon, 'contained' SIB in the white car following a new and challenging bike road on the D & R Canal.

Past 24 hours as I type this post, two instances of heavy duty neurological storminess.

Mid-Thursday morning, I stood in the hallway of my office building and left a message with the neurologist's nurse. She called back after a few hours. After stating that—with the Zoloft experience in mind—Charlie seems very sensitive to even small changes in his medications, she said to increase his Tripleptal dosage to what it was prior to Monday.

Granted, there are other reasons for those storms, the chief one being, Charlie is not in school and, Wednesday night, rather gloomily counted off the 20 days till school resumes on the calendar I made for him. Another possible reason is big-time stomach trouble due to something that Jim and I can't fathom, there being no change in Charlie's diet. Charlie could, should, drink more fluids but getting him to drink more water is easier said than done. (Yeh, like everything.) Charlie does like diet Coke and, after I came home from work (Thursday was the last day of Orientation for the incoming first-year students and I had gone in to help schedule their classes), Jim went to the convenience store and returned with a couple of 'brown drinks.'

It wasn't a peaceful-easy afternoon. We were lucky that a friend—a young woman who's a college student and disability activist—stopped by for a nice visit and a nice break from the routines the three of us can't help falling into. Charlie had been groggy and sleepy and just uncomfortable all day and at last went out for a bike ride with Jim.

It was a far, far from perfect day. It did end a lot more peacefully, as in less stormily, than it had begun.

It is good (not sure that's quite the right word) to know how the meds Charlie takes may be—are—helping him.

We do hope—and I think  we're not alone—that there can be some less stormy way to figure that out, and to help Charlie allay the riot in his head when things don't come together the way he so thought they must.

 

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14 Responses to “Sensitive to Everything (2): Storminess, Medications, Change”
  1. Matthew just fell asleep after not going at all last nite. First time this has ever happened. Put him back on Risperdal yesterday after being on Geodon for about 6 weeks and prior to that Risperdal for 6 months and Geodon for 7 years.
    Having problems with Ped and Neurologist so consulting with Pharmacist as he is easily available and accessible and knows history – probably more schooling than the other two.
    Matt has a new thing – before I even finsh drinking a glass of milk he is there whiping the milk off my face.
    Long ago he would not tolerate me with a towel over my head or in a bathrobe.
    HE closes my magazines and removes book marks from books. Now he is putting away my keys before I can.
    Always been only on one med, but maybe time to add another – neuro appt is next week and want to go back to Geodon, but Ped on vac and not enough to last till next week.

  2. Rhi says:

    I’m super sensitive to medication changes myself, so I know how frustrating it is!

  3. Jill says:

    The soda that Charlie is drinking may be causing him to become dehydrated. Even though diet soda contains less sugar than regular soda, if it contains caffeine it is actually making Charlie sweat and urinate more and it could be giving him headaches. Caffeine is a drug and some people don’t tolerate it well at all.
    Even plain water may not be the best drink for Charlie after his bike rides because water doesn’t replace the electrolytes that he’s losing through physical exercise. A sports drink like Gatorade or Accelerade (my bike-riding hubby’s personal favorite) is much better.
    Soft drinks can be addictive. Take away a heavy soda drinker’s beverage of choice and he or she will probably turn irritable, headachy and unable to concentrate. That’s why Charlie reaches for the “green drink” or the “brown drink” instead of a bottled water. You might want to talk to Charlie’s doctor about the best drinks for him.

  4. Niksmom says:

    UGH. Can very much relate to the heightened sensitvity to even the slightest changes in medications. It often take Nik several days AFTER we’ve made a change to recover once we go back to the prior dose. You may want to consider trying only ONE change in a two week period. If you decrease then re-increase one med and then change another right on its heels, you may not be able to tell if the behaviors you’re seeing are from the shift up and down in the first med or the decrease in the second. (Hope that made sense.) Just my unsolicited two cents based on some really awful experiences with Nik.

  5. Louise says:

    I completely agree with Jill about the diet soda. If Charlie is sensitive to everything, then he is certainly sensitive to phenylalanine. I know *I* certainly am!
    This amino acid may be natural, but as a food additive, it’s a monster. ADHD/OCS/ADD behaviors – all can become out-of-control and terrifying when a child with one of these diagnoses consumes aspartame.
    There is apparently an unstudied link between autism and phenylanines. PKU – a disease caused by the inability to regulate phenylketonurics – actually mimics autism.
    You’re probably already familiar with the problems regarding aspartame, which seems to be in everything.
    Are there other brown drinks that Charlie likes? Iced tea? Plain old cola, made with sugar? Kool-aid you make yourself?

  6. farmwifetwo says:

    The child psych told us that a child has to come off the meds for a minimum of 2 weeks and 4 if you can stand it.
    Otherwise, the meds themselves may be rebounding as my eldest’s Risperdal was. It was creating the anxiety, OCD, bedwetting… once removed… and it was an interesting 4 weeks but nothing excessive… those issues became minimal.
    Our bodies become addicted to the meds… so removing them… by weaning… is always going to be a nasty process.
    If you are going to wean them, it is better to have a plan in place. We had the school on side, everyone knew it was happening… yes they demanded we put him back on them but we proved that proper OT, proper sensory diet, is all that is needed at this time. Saying that… puberty may cause us to return to anti-anxiety meds… but we’ll cross that bridge then.

  7. farmwifetwo says:

    I agree with the asparatame comment… I find I cannot drink it… makes me very edgy… little things bother me… I don’t like how I feel after I’ve had a pop with it in.
    When I was pregnant they told us not to drink it and if we were going to have a pop have the stuff with the sugar in it.
    Little boy doesn’t like water either… so I dilute the frozen juice by atleast half… So, he gets less sugar, and more water.

  8. autismvox says:

    @farmwifetwo,
    We actually had a 4-week plan for going off the meds, written up by the doctor’s office. Adolescence of course does affect things tremendously, so the plan always includes the decision to return to the med, with behaviors in mind.
    @Niksmom,
    I still remember a very disastrous experience when Charlie was 7 and we tried to switch his meds!
    We’d been talking to the doctor regularly about weaning Charlie off some of the medications. I always debate if it’s better to do it during school or during the summer (when we can just focus on a med change). Never fun, at any time!
    @Louise and Jill,
    Charlie has actually been drinking a lot more water now! He doesn’t like Gatorade and those sorts of sports drinks; we’ve indeed offered them).

  9. Louise says:

    Here we are talking about beverages! What about sun tea? All you need is a jar, some tea bags, water and the sun. The combination of green and black teas makes for a *very* refreshing beverage.
    We keep cut-up lemons and limes in a bag in the freezer. They’re perfect to use as ice cubes. Would Charlie like something like that? Even cut-up frozen melon would be great in water. Anything to make staying hydrated fun.
    If Charlie hasn’t had as many aspartame-laced drinks lately, that’s all to the better. But that will also mean that if he has one now, he’ll have a more pronounced reaction.

  10. mothersvox says:

    Sorry to hear about the storms . . . I agree that the diet sodas are dehydrating, and some data suggest that they do odd things to blood sugar level, even though sugarless. Hang in there!

  11. You are absolutely right about how hard it can be to figure out what med/supplement/etc is causing which desirable or undesirable reaction or behavior, singly or in combinations. Throw in puberty and yikes!
    I made the mistake of starting The Boy on fish oil and 5HTP at the same time last year, and boy did aggression return, in full force! After a month of general unhappiness all around, I finally remembered that back when he was tiny, fish oil had seemed to increase his aggression. A month after dropping both items, I re-introduced 5HTP alone, and it’s been great for taking the edge of his OCD. I do wish he could tell me how changing meds or eating different foods makes him feel…the Psychic Mommy Network only works to a point!

  12. autismvox says:

    Thanks to everyone for the suggestions! Alas, the diet soda, while easily pointed to, was not the reason for much of the trouble. Would that it were so easy to determine the cause for any behavior. We have been expecting ‘storms’ in Charlie, as he is not in school.
    Determining medications and dosages for a child who is not able to express with too much precision how the medications and dosages affect him remains a very inexact science.
    And would that, too, one did not have to use such medications. But one has to do what one can.

  13. autismvox says:

    @Melanie,
    Ha, yes, the Psychic Mommy Network’s powers do have their limits!
    Mine did tell me that, while I was scheduling first-year students in math and other core curriculum requirements, it was not altogether, um, peaceable on the homefront.
    We gave Charlie fish oil several years ago. Thought it helped to sharpen his articulation some, but that seemed only to happen for a bit.
    Some of these anti-anxiety meds have seemed to help Charlie a lot. I was feeling out forms for his school this morning and had to list his meds and dosages several times and why he takes them—found myself writing ‘anxiety’ 3 times.

  14. Sarah says:

    Thanks for the study on sensory integration, Kristina. If only the DSM V would define Autism this way! They what new testing and educational programs could come from this premise? Tests to measure progress in how people with Autism integrate best? What new mindful behaviors could students learn if professionals had tools to view their natural paths of integrating?

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