Help me with terminology, so I can google this...

[Maus]

...or advice is welcome, too.

 

I've noticed something in DD6 that I want to learn more about, to see what is developmentally appropriate.

 

She's not been officially diagnosed with anything, but it is becoming apparent that she has some combination of the following:  hypoglycemia, OCD, and some other anxiety and/or sensory issue involving crowds and loud noises.

 

What I'm wanting to google is that she can't distinguish and/or verbalize what's wrong.  She tends to have a meltdown and start crying that she's hot when it's obvious that it's the crowd and the noise that are really the issue, or that she's cold when it's becoming obvious that she's low blood sugar.  (Her little hands do tend to get icy cold when she hasn't eaten enough.)  She also gets cranky and denies she needs the bathroom, and then it turns out she does.  And she tends to strip down completely to use the bathroom, because she's "too hot."

 

It seems like she interprets everything she feels both physically and psychologically as body temperature.

[East Coast Sue]

Sounds very similar to two of my kids. One of them even mixed up hot and cold, even at age 5-6. Both are diagnosed with a sensory processing disorder. One is mainly avoidant of sensory stimulation and the other is definitely sensory seeking. Finding a good balance through a sensory diet helps quite a bit but I do make accommodations for stripping down in he bathroom and anything else I can possibly do to help avoid overload. Noise blocking headphones and chew toys were my life saver for crowds and noise.

 

Sorry, I didn't help with your terminology question: sensory processing disorder is all I'm coming up with.

Edited July 25, 2016 by Sue in TX

[Pawz4me]

Synesthesia?

[Petrichor]

So, she's bothered by all the things going on, noises, and all the clothing touching her, but it's too overwhelming for her to be able to figure out what all the stressors are, and she knows that clothes on=warmer body and clothes on = bothered by clothing touching her. 

 

Maybe a similar, but more common occurrence is kids complaining that their stomach aches when really they are feeling nervous or otherwise uncomfortable.

 

and because they are so convinced that their stomachs ache, their stomach DOES start to ache. 

 

So, maybe your DD has so much going on that her clothes start to bother her, she starts to think what she feels is that she is hot, and then she really actually starts to BE hot. 

 

ETA: just trying to help you think through it, maybe it will give you something to start your googling with

Edited July 25, 2016 by Dust

[Maus]

Sounds very similar to two of my kids. One of them even mixed up hot and cold, even at age 5-6. Both are diagnosed with a sensory processing disorder. One is mainly avoidant of sensory stimulation and the other is definitely sensory seeking. Finding a good balance through a sensory diet helps quite a bit but I do make accommodations for stripping down in he bathroom and anything else I can possibly do to help avoid overload. Noise blocking headphones and chew toys were my life saver for crowds and noise.

 

Sorry, I didn't help with your terminology question: sensory processing disorder is all I'm coming up with.

 

She does mix up hot and cold, actually.  Something I've wondered about, because it seems so basic, and she's at level or advanced in many other ways.  (She can correctly count up pocket change, for instance.  Something her same age cousin can't do; he still counts the bills, not the denominations, so he's convinced Grandma gave him three dollars for his birthday --  she gave him two twenties and a five.)

 

And where my son avoids new sensations, she tends to be a thrill seeker, so that's probably sensory seeking.

 

I don't mind if she strips down in the bathroom at home, but I'm trying to convince her not to do it elsewhere.  It is startling for her teachers at church or karate or whatever when she walks out carrying all her clothes!

[Storygirl]

It sounds like sensory processing issues to me, as well. An occupational therapist can evaluate her and provide therapy to help her learn to self-regulate better.

[Maus]

Synesthesia?

Very interesting!  I've heard about people who see sound as color, including some people with ASD.  ASD seems to run in the family, so maybe that is what's going on with her.

[Maus]

So, she's bothered by all the things going on, noises, and all the clothing touching her, but it's too overwhelming for her to be able to figure out what all the stressors are, and she knows that clothes on=warmer body and clothes on = bothered by clothing touching her. 

 

Maybe a similar, but more common occurrence is kids complaining that their stomach aches when really they are feeling nervous or otherwise uncomfortable.

 

and because they are so convinced that their stomachs ache, their stomach DOES start to ache. 

 

So, maybe your DD has so much going on that her clothes start to bother her, she starts to think what she feels is that she is hot, and then she really actually starts to BE hot. 

 

ETA: just trying to help you think through it, maybe it will give you something to start your googling with

Hmm, come to think of it, I won't wear turtle necks or anything close fitting around my neck, and it does have some kind of weird connection to crowds and social anxiety.  (A sort of feeling of being trapped.)  Could well be what's going on with her.

[Storygirl]

Sensory issues are often co-morbid with ASD. You can google the DSM5 symptoms for ASD and think about whether you see other things in her that might point in that direction. If so, it would help to have her evaluated.

 

DS12 is on the border of the autism spectrum. He has SPD and trouble with understanding his own body signals. He has trouble understanding when he feels nausea, for example. He definitely doesn't get the same signals from his body as someone who is neurotypical.

[Maus]

It sounds like sensory processing issues to me, as well. An occupational therapist can evaluate her and provide therapy to help her learn to self-regulate better.

I have a recommendation for a good local OT for my older two, who both have dysgraphia.  I'll look into that, but we'll have to self-pay at this point.  That 's one professional our insurance won't cover.  

 

(I am considering applying for SSI, even though we won't qualify income-wise, because I've heard that if your child otherwise qualifies and is turned down based on income, he or she can still get Medicaid, and that Medicaid might pay for OT.  Anyone have personal experience with that?)

[kbutton]

Hmm, come to think of it, I won't wear turtle necks or anything close fitting around my neck, and it does have some kind of weird connection to crowds and social anxiety.  (A sort of feeling of being trapped.)  Could well be what's going on with her.

 

If I feel trapped or nauseated, I start feeling hot. The things you mentioned make me feel that way too. The current trend of scarves looped around necks and draped all over makes me feel like I'm going to suffocate, lol! There is no mistaken sense--I actually do get hot, and it can be as fast as flipping a switch. It also happens if I hold my arms up in the air for very long--I get wobbly, hot, and short of breath. I would still call it sensory. Clothes when that happens are very frustrating. I promise I don't strip though. Not in public anyway. I do calculate just how hot of an environment I'll be in, and I don't like tight clothing. Unless it's freezing outside, it helps to have some combination of hands, feet, forearms, neck, or head uncovered. It's almost a formula based on temperature of my environment--I will think, "I could wear that as long as I wear sandals, but if I have to wear shoes, I need short sleeves." I will also get anxious when overly hot (if it's sudden and I can't control it--if it's not sudden, I just get headaches) even if there is no reason to be anxious. It goes both ways. Jewelry can feel restrictive too. I got over most of it as a child, but it came roaring back after I had kids. I think having someone touching me nearly 24/7 rekindled it.

 

Sometimes I can barely stand shoes and socks, and I don't like to sleep with my feet covered. I have to be really, really cold to do that. When I was a kid, I loved it when my feet got so cold that they almost started to hurt. My feet tend to be fiery hot most of the time (to the touch as well as perception). If they are comfortable, I am less likely to have one of these big sensory moments. 

 

Let me tell you, the peri-menopausal hot flashes have not been fun!!! 

 

There is an element of mind over matter, at least enough of one to stave off a really big reaction sometimes. OT can help with that.

 

I was over-aware of things in my body vs. under-aware, so it can be problem for both ends of the feely spectrum.

[dirty ethel rackham]

I agree that it sounds very much like an issue with sensory integration.  I have one that would get overwhelmed and then not be able to accurately express what he was feeling.  The brain often needs retraining to learn how to deal with sensory stimuli.  I would definitely try to get an OT evaluation.  But, since you have some obstacles to that, there are a couple of books that may be helpful.  The Out-of-Sync Child and The Out-of-Sync Child Has Fun are two books that helped me with my sensory kid. 

 

Hypoglycemia can actually be a separate issue.  My other kid (without sensory issues) suffered from hypoglycemia, but could not recognize it as the need to eat.  When I sent him off to college, I had to tell his roommate that, if M started to get irritable and irrational, don't speak, but just give him something to eat.  I even had a special spot for that food.  Once he ate, he was much more able to take care of himself. 

[Kiara.I]

Also have a look at retained reflexes. They probably aren't really what you describe, but if they're a piece of the puzzle they're quite easy to check for (or rule out) and treat for.

 

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[Pippen]

For search terms, use temperature regulation along sensory processing or sensory integration. You should come up with some hits along these lines:

 

http://aspiewriter.com/2015/07/temperature-regulation-why-does-my-autistic-child-refuse-to-wear-a-coat.html

 

If you haven't had any evaluations done on here, there's a book called "What Your Explosive Child is Trying to Tell You: Discovering the Pathway From Symptoms to Solutions" by Douglas Riley that's very helpful.

 

ETA: By way of advice, I'd offer that these sorts of issues are rarely standalone issues, hence the book recommendation. For example, sensory integration and anxiety can be so tightly wound up together that in situations such as a crowded room, it can be impossible to determine which is the cause of the distress. Think of what it's like when you're forced to wear itchy or otherwise uncomfortable clothing, and how you put it on and know what you're going to feel like two hours later. Or that sense of wanting to hurl when you were pregnant and got a whiff of green beans or whatever food that made your stomach want to lurch. Or being exhausted or being hung over and someone is blasting music or your chattiest relative calls up to talk non-stop when you just woke up. Once you've experienced those a time or two of course your anxiety level is going to rise just at the prospect of facing it again. So in terms of diagnosis and accommodations and treatment and moving them forward, it's important to recognize both the sensory aspects and the anxiety aspects. 

 

Edited July 26, 2016 by Pippen

[MaeFlowers]

If you don't mind, I have a couple of questions.

 

I was just wondering how these things would be teased out. I have anxiety and panic disorder and the inability to cool down/warm up. How would they know if it is sensory or anxiety?

 

Second, what level of sensory issues is normal? For example, my dd can't stand clothes as night but seems fine during the daytime. I can't stand seams in socks. Is one thing normal but three are not? Or is it simply the combination of things that make a diagnosis?

 

Lastly, at what age should they be able to tell the difference between hot and cold? Dd has always switched this in terms of room/outdoor temp but nothing else. I thought it was odd but something she would get eventually.

 

Sorry to jump in on the thread. I just recognize a lot of this is myself or dd and am starting to wonder.

[kbutton]

Hypoglycemia can actually be a separate issue.  My other kid (without sensory issues) suffered from hypoglycemia, but could not recognize it as the need to eat.  When I sent him off to college, I had to tell his roommate that, if M started to get irritable and irrational, don't speak, but just give him something to eat.  I even had a special spot for that food.  Once he ate, he was much more able to take care of himself. 

 

Both my kids get reactive hypoglycemia, but I think sensory regulation issues can make a child unaware that the feelings associated with the hypoglycemia mean they need to eat. 

 

I was just wondering how these things would be teased out. I have anxiety and panic disorder and the inability to cool down/warm up. How would they know if it is sensory or anxiety? The psychologist who's done educational testing with my kids feels that sensory issues "mature" into anxiety to whatever extent sensory issues are not integrated.

 

Second, what level of sensory issues is normal? For example, my dd can't stand clothes as night but seems fine during the daytime. I can't stand seams in socks. Is one thing normal but three are not? Or is it simply the combination of things that make a diagnosis? There are some tests that measure what percentile you are in for certain aspects of sensory stuff, but our OT says whatever level makes "normal" difficult for a particular person or family is where you would want to seek therapy. Obviously, it's possible for a family to not recognize how significant something is if everyone has sensory issues, but that's when a test could help.

 

 

[Pippen]

If you don't mind, I have a couple of questions.

 

I was just wondering how these things would be teased out. I have anxiety and panic disorder and the inability to cool down/warm up. How would they know if it is sensory or anxiety?

 

Second, what level of sensory issues is normal? For example, my dd can't stand clothes as night but seems fine during the daytime. I can't stand seams in socks. Is one thing normal but three are not? Or is it simply the combination of things that make a diagnosis?

 

Lastly, at what age should they be able to tell the difference between hot and cold? Dd has always switched this in terms of room/outdoor temp but nothing else. I thought it was odd but something she would get eventually.

 

Sorry to jump in on the thread. I just recognize a lot of this is myself or dd and am starting to wonder.

 

First a disclaimer, this is coming from the perspective of been there, done that and lived to tell about it mom expertise, not professional expertise.

 

I was just wondering how these things would be teased out. I have anxiety and panic disorder and the inability to cool down/warm up. How would they know if it is sensory or anxiety?

 

1)  For sensory issues an occupational therapist would do an evaluation based on questions/history and diagnostic testing to look for signs of sensory issues. Asking about what sorts of situations and environmental factors cause anxiety would be part of that evaluation, because those might be red flags for sensory issues.

 

I think it's very difficult to tease apart precisely what's caused by anxiety or sensory, or by other issues. Take the example of a child walking into a gym full of noisy children and having a meltdown. Breaking that specific instance down is incredibly complex. Was the reaction from an immediate sensory overload to the noise? Were they in a state of heightened anxiety because the last time they encountered a similar situation it was distressing? Were they exhausted or hungry or upset about something already, so their threshold of what they could handle sensory-wise was lowered?  Is social anxiety a factor?  Were their speech/language processing issues so the child was caught off guard because they didn't know what what coming, even though the parent thought they'd prepared them? We humans are so complex and these issues so inter-related, that what's helpful in the long run is to recognize the presence of the various issues, become educated about them, then treat and/or accommodate as needed. 

 

If sensory issues are walking hand-in-hand with anxiety, recognizing/treating/accommodating for those can be a big help. Heightened sensory response can be driven by heightened anxiety, and visa versa. Taking that same kiddo into a noisy gym when they've been prepped by a social story so they know what's coming, when the event is sandwiched between some planned, beneficial sensory activity (ie swinging) and when they have noise cancelling headphones in their backpack so their anxiety is reduced because they now have a way to control the noise if needed--together these may turn a meltdown situation into a manageable situation.

 

 

Second, what level of sensory issues is normal? For example, my dd can't stand clothes as night but seems fine during the daytime. I can't stand seams in socks. Is one thing normal but three are not? Or is it simply the combination of things that make a diagnosis?

 

2)  Our responses to sensory stimuli fall all along a spectrum, but for me it was most helpful to frame it up not in terms of normal/not normal, but in terms of how those issues impact functioning in the world--both in the present and the potential to impact functioning in the future. I'm fairly sensitive to tactile stimulation--can't stand tags, wear fleece and cotton every day unless I truly can't avoid it, can't focus if there's even a little wrinkle in my socks. I'm also allergic to wool, so as a child when my mom dressed me in wool I not only felt like I wanted to crawl out of my skin because it was itchy, but I was also a hot, rashy mess and you can bet I threw a fit the next time I was pushed to wear that outfit. Now as an adult I can make clothing choices for myself so it very rarely causes me issues. My husband is more sensitive to noise than the rest of us, especially when first waking up, but he's controlled when expressing displeasure about it so it's not damaging to family relationships. Now a child who can't handle a room full of noisy children is likely to have some challenges in a school classroom or group activity setting--sometimes so much that it greatly restricts participation. 

 

Lastly, at what age should they be able to tell the difference between hot and cold? Dd has always switched this in terms of room/outdoor temp but nothing else. I thought it was odd but something she would get eventually.

3)  I can't tell you what age children should be able to tell the difference between hot and cold, but for mine it was during the preschool years. 

[dirty ethel rackham]

Both my kids get reactive hypoglycemia, but I think sensory regulation issues can make a child unaware that the feelings associated with the hypoglycemia mean they need to eat.

Also, the diminished cognitive function that accompanies hypoglycemia can make it difficult to recognize the problem and act on the solution. They just feel yucky and are irrational. I have reactive hypoglycemia and it took me years to recognize the preliminary symptoms before the cognitive fog set in. Despite my strict adherence to diet management, an increase in stress or a great increase in exertion could lead to unexpected lows.

 

The best treatment is preventing the lows through a diet that keeps sugars on an even keel by eliminating or greatly reducing high glycemic foods, balancing carbs with protein and/or fat, and eating frequently. Expecting a kid to be able to do that on their own without lots of teaching and support is unreasonable. I was a college student when I was diagnosed and it took me years to get it right. I had to rely on the support of people around me to help when I messed up the diet or found myself in situations where I didn't have access to the right foods at the right time.

 

What I was getting to in my earlier post is that once someone has entered the irrational fog, the only way out is to just feed the them ... No discussion or admonishment. Any discussion can wait until the brain has been properly nourished again.

 

As to whether or not hypoglycemia is sensory based ... I supposed someone who has difficulty processing sensory input could have more difficulty recognizing the warning signs before things are too far gone. But that can be difficult to do even for neurotical people.

 

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[redsquirrel]

Anxiety from feeling overwhelmed can absolutely make one all hot and sweaty. It can also cause you to be cold and shivering. I have experienced both, and not like a trauma level of anxiety, just sort of regular "I can't deal with this situation' type of anxiety.

[kbutton]

Also, the diminished cognitive function that accompanies hypoglycemia can make it difficult to recognize the problem and act on the solution. They just feel yucky and are irrational. I have reactive hypoglycemia and it took me years to recognize the preliminary symptoms before the cognitive fog set in. Despite my strict adherence to diet management, an increase in stress or a great increase in exertion could lead to unexpected lows.

 

The best treatment is preventing the lows through a diet that keeps sugars on an even keel by eliminating or greatly reducing high glycemic foods, balancing carbs with protein and/or fat, and eating frequently. Expecting a kid to be able to do that on their own without lots of teaching and support is unreasonable. I was a college student when I was diagnosed and it took me years to get it right. I had to rely on the support of people around me to help when I messed up the diet or found myself in situations where I didn't have access to the right foods at the right time.

 

What I was getting to in my earlier post is that once someone has entered the irrational fog, the only way out is to just feed the them ... No discussion or admonishment. Any discussion can wait until the brain has been properly nourished again.

 

As to whether or not hypoglycemia is sensory based ... I supposed someone who has difficulty processing sensory input could have more difficulty recognizing the warning signs before things are too far gone. But that can be difficult to do even for neurotical people.

 

Sent from my SM-G900T using Tapatalk

 

I think that is helpful information. I hope I didn't come across as disagreeing before. I was trying to insert the extra thought since the child in question has such unusual body cues for things.

 

One of mine almost refuses to eat when he gets likes this--it's pretty unreal.

 

For my kids, these reactions usually occur during a growth spurt, though we've had an incident or two around drugs that suppress appetite. 

[Maus]

For search terms, use temperature regulation along sensory processing or sensory integration. You should come up with some hits along these lines:

 

http://aspiewriter.com/2015/07/temperature-regulation-why-does-my-autistic-child-refuse-to-wear-a-coat.html

 

If you haven't had any evaluations done on here, there's a book called "What Your Explosive Child is Trying to Tell You: Discovering the Pathway From Symptoms to Solutions" by Douglas Riley that's very helpful.

 

ETA: By way of advice, I'd offer that these sorts of issues are rarely standalone issues, hence the book recommendation. For example, sensory integration and anxiety can be so tightly wound up together that in situations such as a crowded room, it can be impossible to determine which is the cause of the distress. Think of what it's like when you're forced to wear itchy or otherwise uncomfortable clothing, and how you put it on and know what you're going to feel like two hours later. Or that sense of wanting to hurl when you were pregnant and got a whiff of green beans or whatever food that made your stomach want to lurch. Or being exhausted or being hung over and someone is blasting music or your chattiest relative calls up to talk non-stop when you just woke up. Once you've experienced those a time or two of course your anxiety level is going to rise just at the prospect of facing it again. So in terms of diagnosis and accommodations and treatment and moving them forward, it's important to recognize both the sensory aspects and the anxiety aspects. 

That combination of search terms is very helpful, thanks!