sensory issues

[laure]

DD9 has sensory issues that are not improving, and frankly, embarrassing. She is (thankfully) attending school, soccer practice, music lessons, etc., and so far we have told very few people except her teacher and school nurse about PANDAS. Other things are improving, such as school work, moods. OCD still the same though, and sensory problems persist. The problem is, although we are not really the type of parents to be concerned with appearances, she is drawing negative attention to herself all of the time. Giant knots in the back of her not-brushed since-June hair, clothes two sizes too small because all new clothes are contaminated, very stinky feet because socks are unbearable inside of shoes, long hair everywhere during soccer games because she can't wear a hairband, no jacket, no hat, no mittens, no boots...everything is unbearable to her. I'm sure her friends must be wondering why she smells/looks so strange/ etc. I try to tell her that, but she doesn't want to hear it.

Do I force a brush through her hair, cut it while she sleeps, (wouldn't really do that) is this a battle I can even fight?

[kimballot]

DD9 has sensory issues that are not improving, and frankly, embarrassing. She is (thankfully) attending school, soccer practice, music lessons, etc., and so far we have told very few people except her teacher and school nurse about PANDAS. Other things are improving, such as school work, moods. OCD still the same though, and sensory problems persist. The problem is, although we are not really the type of parents to be concerned with appearances, she is drawing negative attention to herself all of the time. Giant knots in the back of her not-brushed since-June hair, clothes two sizes too small because all new clothes are contaminated, very stinky feet because socks are unbearable inside of shoes, long hair everywhere during soccer games because she can't wear a hairband, no jacket, no hat, no mittens, no boots...everything is unbearable to her. I'm sure her friends must be wondering why she smells/looks so strange/ etc. I try to tell her that, but she doesn't want to hear it.

Do I force a brush through her hair, cut it while she sleeps, (wouldn't really do that) is this a battle I can even fight?

 

 

I think this is a good example of a time when an OT may be able to help (see similar thread http://www.latitudes.org/forums/index.php?showtopic=10488

 

Find one with a strong sensory background who enjoys a challenge. Your daughter sounds like a very rewarding case for a good OT.

[mama2alex]

Not much to add as I was going to suggest the same thing. Our son was diagnosed with sensory integration disorder at age 5, and we worked with an OT for a year. I was looking for improvement in behaviors - opposition, focus, following directions, more than issues that affect hygiene. I did pick up some good ideas from them which have helped him some here and there. Given your situation, I would find a good OT who focuses on sensory issues and give it a try!

[fuelforall]

You could also try to find a pediatric chiropractor that deals with sensory issues. There is one where I live but we haven't gone to her yet.

[AmySLP]

Laurie,

I am aware of a chiropractor whose wife is an OT. His office is in Binghamton/Johnson City. He has extra, ongoing training in neuro. He noticed some problems in my PANDAS daughter, neurologically, before I told him anything about that dx (I took her for a simple adjustment after a fall down the steps!)His wife also does some work at his practice on Saturdays last I knew. She saw my youngest for sensory concerns last year. They are really wonderful and sensitive practioners. PM me if you want their contact info.

 

 

Amy

[tpotter]

I agree with everything everyone else has said.

[laure]

Thanks for all the suggestions. Do you all think we should wait a little while to see if some of these issues go away on their own as she continues treatment? (Only 3 weeks since beginning with Dr. B, and vastly better in many ways). I am trying to balance the negatives of more Dr. visits vs. habit-forming issues. In all of your experiences, is it possible she would not need therapy once the PANDAS is under control?

[Worried_Dad]

We tried OT for your son's severe sensory defensiveness. For him, it didn't help much, unfortunately, although the OT was very compassionate and supportive of the PANDAS diagnosis. Almost all of our ds's sensory issues have resolved following IVIG and prolonged abx (augmentin XR). Only lingering issue is sensitivity to light, and our ds just wears sunglasses outside to cope. (Even got an accommodation at school to wear the shades in class. Thinks he's James Dean now!)

[laure]

Worried Dad: Did you son have contamination issues too? I would love to see those disappear. We have to hide liquid soap like vodka from an alcoholic!

[Worried_Dad]

Oh, man... did we ever! But I always considered that pure OCD, not sensory.

 

In spring/summer of 2009, our son was going through 3-5 cans of Lysol a day: spraying everything until it was soaked, including his own skin. He would spray his arms until they dripped and made big Lysol puddles on the ground. We knew this was terrible for him, but when we tried to stop this, he completely freaked out and begged us to kill him. It was utterly terrifying; even shocked Dr. K when our son did this with the Lysol during IVIG rounds 2 and 3.

 

During this time, he literally could not touch anything without wearing disposable latex gloves (like the healthcare pros use). He'd go through 30-50 pairs a day. We were buying big boxes in bulk from a local pharmacy (they must've thought we were nuts). He couldn't watch anyone prepare food, place it on the placemat (in my home office - only room in which he could eat), carry it, etc., and would squeeze his eyes shut until we left the room. If he saw, he could not eat a bite of it. Could not shower or brush teeth for about a year.

 

So here's the good news: ALL of this melted away once we started the "Saving Sammy" dose of augmentin XR. Now he takes out the garbage for us, plays with our (filthy) puppy, rolls around in the dirt and laughs about it, just acts like a normal (i.e., sloppy) teenage boy. It is wonderful just to see him laugh when his 4-year-old brother slimes him with something!

 

So - based on what I've read and what Dr. K told us - our son was a pretty extreme case of OCD contamination terror (35 on the Y-BOCS scale). And this completely resolved with appropriate PANDAS treatment. So have faith: your DD will recover!

 

 

Worried Dad: Did you son have contamination issues too? I would love to see those disappear. We have to hide liquid soap like vodka from an alcoholic!

[laure]

Oh, man... did we ever! But I always considered that pure OCD, not sensory.

 

In spring/summer of 2009, our son was going through 3-5 cans of Lysol a day: spraying everything until it was soaked, including his own skin. He would spray his arms until they dripped and made big Lysol puddles on the ground. We knew this was terrible for him, but when we tried to stop this, he completely freaked out and begged us to kill him. It was utterly terrifying; even shocked Dr. K when our son did this with the Lysol during IVIG rounds 2 and 3.

 

During this time, he literally could not touch anything without wearing disposable latex gloves (like the healthcare pros use). He'd go through 30-50 pairs a day. We were buying big boxes in bulk from a local pharmacy (they must've thought we were nuts). He couldn't watch anyone prepare food, place it on the placemat (in my home office - only room in which he could eat), carry it, etc., and would squeeze his eyes shut until we left the room. If he saw, he could not eat a bite of it. Could not shower or brush teeth for about a year.

 

So here's the good news: ALL of this melted away once we started the "Saving Sammy" dose of augmentin XR. Now he takes out the garbage for us, plays with our (filthy) puppy, rolls around in the dirt and laughs about it, just acts like a normal (i.e., sloppy) teenage boy. It is wonderful just to see him laugh when his 4-year-old brother slimes him with something!

 

So - based on what I've read and what Dr. K told us - our son was a pretty extreme case of OCD contamination terror (35 on the Y-BOCS scale). And this completely resolved with appropriate PANDAS treatment. So have faith: your DD will recover!

 

 

Worried Dad: Did you son have contamination issues too? I would love to see those disappear. We have to hide liquid soap like vodka from an alcoholic!

[smartyjones]

But I always considered that pure OCD, not sensory.

 

not so much about contamination issues -- but more generally, where is that line between OCD and sensory issues?

 

my son had severe contamination food issues in july -- clear severe OCD like we've never seen. usually, i don't see such an OCD link. if so, it's along the lines of 'just right' OCD. i have been wondering if it's really that or if it's really sensory. we've gotten to a good point where he can usually say, "there's a reason that no one can ever, ever know" (severe OCD), there's a reason that i dont' want to say (?), and there's no reason. he seems to be able to categorize it honestly. i've lately been thinking the 'no reason' may be sensory. when i read The Out of Sync Child, something didn't fit right -- it left me with more of a sense that that wasn't him.

 

i've been reading a book When Labels Don't Fit by Barbara Probst. the theory is that is sensory problems really should be seen as traits with not really good or bad, just individual. but troublesome when the expectation or the environment don't fit the individual. i have found some strategies helpful, esp in the sense of time usuage -- we've been having struggles with time -- getting ready to get out of the house, coming to dinner, etc.

 

i do think for ds, prior to pandas, i can see things that were traits but were not problematic until pandas. and, it does seem it's not so much 'too much' or 'too little' of his sensory experiences as it is problem with regulation.

 

just in the past few days, we've seen some successes with some suggestions. perhaps that's the determination of the cause -- if the treatment helps or not?

 

does anyone have thoughts on that line between sensory and OCD?

[laure]

Worried Dad: Thanks for sharing that amazing story! It gives me hope... From what I can tell, your son was 13 or so when first afflicted? And not diagnosed for about a year? What a tough time for all of you. So his treatment consisted of 3 Ivigs? Our contamination issues (since overnight episode in July) have improved with abx, even more with steroids, but we are now stuck at a plateau. But she is only on 250 azith a day (85 pounds) and I imagine Dr. B will increase the abx or go to Ivig next appointment (next week). So hearing a story like yours makes me think we need to be patient, accepting, and let the drugs do their work. Any other approaches that you feel made a difference in your son's recovery?

Many thanks for that story, I read it to my husband and he was amazed as well. It sounds like you guys had patience in abundance!

[Worried_Dad]

Worried Dad: Thanks for sharing that amazing story! It gives me hope... From what I can tell, your son was 13 or so when first afflicted? And not diagnosed for about a year? What a tough time for all of you. So his treatment consisted of 3 Ivigs? Our contamination issues (since overnight episode in July) have improved with abx, even more with steroids, but we are now stuck at a plateau. But she is only on 250 azith a day (85 pounds) and I imagine Dr. B will increase the abx or go to Ivig next appointment (next week). So hearing a story like yours makes me think we need to be patient, accepting, and let the drugs do their work. Any other approaches that you feel made a difference in your son's recovery?

Many thanks for that story, I read it to my husband and he was amazed as well. It sounds like you guys had patience in abundance!

 

Actually, our son first became ill just before his 11th birthday. Originally diagnosed with ARF/SC, later PANDAS. Symptoms changed pretty dramatically between exacerbations and got worse with each one. Started the high-dose augmentin XR after 2 more rounds of IVIG (rounds 2 & 3 28 days apart) about a year ago, when our son was 13. He's now 14 and a totally different kid.

 

There are parents and children on this forum who've been dealing with PANDAS (usually undiagnosed for a long time) for many years, much longer than we have. Don't know how they do it. Feels like the last 3 1/2 years have lasted a lifetime!

[laure]

Worried Dad: Thanks for sharing that amazing story! It gives me hope... From what I can tell, your son was 13 or so when first afflicted? And not diagnosed for about a year? What a tough time for all of you. So his treatment consisted of 3 Ivigs? Our contamination issues (since overnight episode in July) have improved with abx, even more with steroids, but we are now stuck at a plateau. But she is only on 250 azith a day (85 pounds) and I imagine Dr. B will increase the abx or go to Ivig next appointment (next week). So hearing a story like yours makes me think we need to be patient, accepting, and let the drugs do their work. Any other approaches that you feel made a difference in your son's recovery?

Many thanks for that story, I read it to my husband and he was amazed as well. It sounds like you guys had patience in abundance!

 

Actually, our son first became ill just before his 11th birthday. Originally diagnosed with ARF/SC, later PANDAS. Symptoms changed pretty dramatically between exacerbations and got worse with each one. Started the high-dose augmentin XR after 2 more rounds of IVIG (rounds 2 & 3 28 days apart) about a year ago, when our son was 13. He's now 14 and a totally different kid.

 

There are parents and children on this forum who've been dealing with PANDAS (usually undiagnosed for a long time) for many years, much longer than we have. Don't know how they do it. Feels like the last 3 1/2 years have lasted a lifetime!