Extreme tactile stimulation issues

[Dedee]

My daughter has always had numerous complaints that everything hurts. Shoes can't be too tight, tags have to come out of all cloths, socks make her crazy, she can't wear blue jeans, brushing her hair causes major melt downs, the list goes on. I know many of you can relate to these issues. She also has a very low pain tolerance. Any small injury causes major crying. So my question is, has anyone found any sort of therapy of any method to help with these extreme sensitivities? I am so tired of fighting every morning just to get her hair brushed. It's crazy.

 

Dedee

[StillHopeful]

Hi Deedee -

 

I don't have an answer for you but I can relate. My DS12 is has the same issue when it comes to tactile input and pain. It has driven me crazy... constantly (this weekend in fact) buying and returning clothes, fighting over wearing a jacket, major tears over a tiny scratch..... We tried OT but the biggest change is when I started to accept him and just let him be. I realized that he was not going to be a fashion star and that he won't freeze in January with shorts on. I put this under the category of "Don't sweat the small stuff".

 

Have you taken your daughter to OT? They can teach you The Wilbarger Protocol (brushing). Also read the Out of Sync Child if you haven't already. The brushing didn't do much for us but I thought the book was helpful. Good luck!

[LNN]

I like Pina Coladas for this condition (for me, not DD)

 

My DD had these issues - lots of tears and angry mornings. She either outgrew it or the methylation stuff helped (plus some CBT in the early days). Most issues are now resolved. Hair brushing is still a battle but that's her trying to be a tween not sensory. I've had to yield and let her brush her own hair - not to my liking, but it gets brushed and she gets out the door on time.

[MomWithOCDSon]

DeeDee --

 

It sounds as though your DD might be dealing with some level of Sensory Integration Disorder (SID); maybe it's transitory and attached to her PANDAS/PANS, or it might be part of who she is. I agree that "The Out-of-Sync Child" is a great read; we had several "aha" moments ourselves, reading that in the days in which we were desperately searching for what was up with DS, pre-PANDAS. We actually had him evaluated by an OT group, too, and took him there for therapy a few times, but he hated it and we didn't see much gain because he was so resistent.

 

We never/still don't get complaints that things "hurt," but despite overall good physical and mental health, DS continues to be "picky," especially about clothing. One brand of socks for the last 5 years . . . no other brand, no other size, even though his feet have grown at least 7 sizes in that time! Tagless everything . . . t-shirts, underwear; at least those are easy to find these days! One pair of shoes for all occasions and at one time -- usually Merrill's or Eco's because, legitmately, he has a strangely-shaped foot with a toe box the size of a rhino matched with a skinny, little heel. He wears the one pair 'til his toes are sticking out the front or all the tread starts to fall off, whichever comes first, and then we buy one new pair which he will again wear until they are no longer wearable.

 

For years he wouldn't wear jeans . . . my DS was the George Costanza of elementary school, insisting on soft, fleecy sweat pants and shorts; Hanna Andersson saved him from constant ridicule because they make decent looking cargo styles without elastic at the ankles. By middle school, I'd talked him into soft, well-conditioned denim to the extent he would wear denim Scrubs, which also come in a cargo style and are very soft, with elastic and/or drawstring waists. I ordered him the "short" sizes and still cut 'em off and hemmed 'em, and took off the "Scrubs" tag on the back. Just a couple of years ago, he finally decided he could/would wear Dockers, khakis and even regular jeans, but he's still picky about the grade/weight of the denim and doesn't like a whole bunch of pockets that tend to bunch up and feel weird on the inside of the pants. Lots of times, I just cut the pockets out and sew up the openings (especially in the seats of pants).

 

Now whether its just maturity or exposure over time or peer pressure, I see him getting more and more "normal" in this arena, so I'd think the chances are good that your DD will, also. Hang in there, and I agree that you should take at least one Pina Colada and then deal with this in the morning!

[dut]

We had same stuff with dd (at one point no socks, only sandals, 2 tops and just 2 sets of trousers, no hairbrushing and very little bathing). Nothing to offer other than what's already been offered except that for us when it wasn't quite so severe, we were saved from sock h**l by buying socks made for kids with diabetes. They are expensive but are virtually seem-free and for a while it was all she was willing to wear. You can google them. Also Hannah Anderson also makes (at least, used to) some fairly ok seem-free ones that are cheaper but dd wouldn't use them....

 

Socks don't sound much but could produce multiple daily meltdowns for us. In addition to the "Out of Sync Child" there is the "Raising A Sensory Smart Child" and "The Out-of-Sync Child Has Fun".

 

I can't remeber how much tactile defensiveness is covered in the books though.

 

Good luck

[mama2alex]

I am researching mold illness and just learned that low MSH (alpha melanocyte stimulating hormone) can cause low pain tolerance. Low MSH causes decreased melatonin and endorphin production. Melatonin is obviously needed for sleep regulation and endorphins help with pain tolerance. I think you can test for MSH levels, but I don't know what the test is called. Mold toxicity definitely causes low MSH, but I don't know what else could cause it.

[nicklemama]

DS's first diagnosis was sensory processing disorder (before we finally figured out the PANDAS). He was in OT for sensory seeking. It helped some. It helped me learn how to help him get the sensory stimulation he was craving. In the end, all the sensory stuff diminished w/ PANDAS treatment. I would say its helpful day to day but don't look for it to help it go away. I think its tied directly to how well a PANDAS child is doing. Just my two cents.

[AmySLP]

Hi Deedee -

 

I don't have an answer for you but I can relate. My DS12 is has the same issue when it comes to tactile input and pain. It has driven me crazy... constantly (this weekend in fact) buying and returning clothes....i

 

Such a relief to hear that I'm not alone in this....some if the clothes did not even make it out if the bag before they were deemed "too hard!"

[SSS]

Oh my, do I have clothing stories.

Like others, dd was first dx'd Sensory Processing Disorder

and we went through Occupational Therapy (of course not covered by insurance)

for 9 months- brushing technique every 2-3 hours, listening therapy, etc. The therapy itself was fun, play really.

It seemed to improve, but at the same time I had started bio-med with special diets and treating yeast,

so can't be sure where the gains came from exactly.

But, over time, I figured out a large portion of it was OCD-

Grey ONLY colored sweat pants for 2 full years, wearing the exact same outfit to kindergarten for 21 days in a row

(and what a relief you people know exactly what I mean about she would NOT go out the door without specific clothes- a literal nervous breakdown)

I've chilled with the whole thing, too- how else to survive and get her to function?

Her OCD has waxed and waned- we did a long stint last year with actual jeans (and peer pressure does help)

But this year?

Only Navy colored leggings.

*sigh*

So I buy enough, and wash enough.

Edited November 14, 2012 by S & S

[Agnes26]

My daughter has always had numerous complaints that everything hurts. Shoes can't be too tight, tags have to come out of all cloths, socks make her crazy, she can't wear blue jeans, brushing her hair causes major melt downs, the list goes on. I know many of you can relate to these issues. She also has a very low pain tolerance. Any small injury causes major crying. So my question is, has anyone found any sort of therapy of any method to help with these extreme sensitivities? I am so tired of fighting every morning just to get her hair brushed. It's crazy.

 

Dedee

 

This was my daughter. She was diagnosed with SPD three years ago. We did OT, Wilbarger, Sensory diet, etc. Nothing worked. Turns out her sensory defensiveness was actually "just right" OCD. ERP at FSU knocked it out.

[EmilyK]

DS' sensory symptoms disappear with appropriate antibiotic for PANDAS/PANS and come back with flares.

[smartyjones]

my ds did have severe noise sensory issues during the height of exacerbation. a lot of his other isses that could seem sensory,but i believe were more likely 'just right' OCD.

 

i read the out f sync child, and while i found it fascinating - reading it made me feel sensory integration disorder wasn't really his issue. i felt the same after reading when the brain can't hear - about auditory processing disorder. i'm sure there are a few other books that i had similar experiences with -- of course, becasue he doesn't have these disorders -- he has bits and pieces of them b/c he has PANDAS, so while there may have been some good suggestions, etc - i think they left me still in a state of looking for answers. of course, i don't put my beloved explosvie child in this category -- that is definitely my number one suggestion for dealing with a difficult behaviors in a kid -- but, not to provide solutions for the kid, to provide solutions for the adult on better ways to interact with the kid.

 

one book that really did resonate with good practical strategies that DID help when we put them in place was http://www.whenthela...te/Welcome.html.

[Dedee]

Thank you all so much for your responses and suggestions. We obviously all share similiar challenges. Things seem to be a little worse the last week for some reason. I will get the book you all suggested and maybe I can get some good ideas from that. Thank you all so much!

 

Dedee