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Sensory Integration/Perception Disorder


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My son also became ultra sensitive to the warmth of food. At times, if it was luke warm, he'd say it was burning hot. Same with bath water.

 

Sensory Issue: Megan has become very sensitive to taste & is rejecting many of her favorite foods. She says that they taste wrong. Actual issue: once we understood OCD, she was able to tell me that her OCD was making her think something bad (mostly throwing up) would happen if she tried to eat certain things. So to fight back against the OCD, we would take baby steps to try the food, break up the ritual of AVOIDANCE.

 

I should add that some PANDAS kids can have altered taste sensations. For my dd it happened post-IVIG as part of turning back the pages. Dd complained that "things that should taste good don't" and "my taste buds aren't working right". Fortunately, this problem passed after a couple of days. I asked Diana P. about this, she said her son had that same symptoms (altered taste sensation) during the worst of his PANDAS.

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It's funny how much I can forget in 17 months. As I read back through my notes last night, (hindsight being what it is!) I would say that 40% of the initial issues were sensory - as if PANDAS somehow made all sensory challenges one hundred times more intense. The other 60% was OCD, but it was as if we could not see the OCD at first for all the sensory issues that were covering it up.

 

You have all reminded me, that for a long time I felt as if I needed to teach her to interpret her body again - she could not get into a warm bath (too hot), take a shower (hot, pain), hear a loud bell or alarm, tolerate bright light, etc. She could not even seem to interpret simple messages from her body - anything that was different became "I am going to throw-up". It was like I had to teach her what a feeling of needing to use the bathroom, eat, being full - what those feelings really meant. Once she learned all this again, then we were able to identify "real" pains or discomfort, and were then able to diagnose an actual stomach issue - peptic ulcers. Even the tone of voice from a friend would be dramatically misinterpreted. To this day, when she says "such and such yelled at me today", I still ask her "a real yell or a Megan yell"? Then we can talk about the situation. I remember getting so frustrated that she would cry if I was even a little annoyed with her - I felt very manipulated, like I could not get mad at all anymore without triggering a panic attack. I had to adopt a really calm voice all the time (with some serious running time in the morning to burn off my frustration!) OT really helped with all of this, as did ERP therapy for the OCD. When she was diagnosed with panic disorder, I was sure that SPD was causing much of the panic. I do think it is all interrelated.

 

It's such a strange disease - I likened it to a stroke victim at one point - except she could walk fine, she just had to relearn how to interpret signals to her brain - she was hypersensitive to everything.

 

This also reminds me how important it is to take care of yourself, and to find ways to release all that frustration outside of the interactions with a PANDAS child. My worst times in memory are when I got really mad at Meg, for things that she could not help without a lot of eductation and therapy - and antibiotics. My most proud times are when I was able to remain calm when all around me was in crisis mode. Eating, getting out my frustration, having someone to talk to - those were my outlets. I'm sure my friends are bored stiff, but thank God they did listen some, as I did not have this forum at the time.

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I'm gonna add one more thing here that seems to have started. Can anyone relate to this or am I just reading too hard?

My son has taken to re-arranging my house. I don't know if this is just him trying to decorate, or if its a compulsion. I keep finding the flower pot and the soap dispenser in my 1/2 bath switched around. I like to see the flower upon entering, so I keep it on the right of the sink so it can be seen from the door, but my son keeps putting it on the other side and switching it up with the soap dispenser. I've moved it back several times and just found it changed again.

 

Yesterday I kept him home from school, and he was doing something in the den and told me not to come in til he was finished and when he was done, he rearranged the furniture. he moved the recliner next to the couch and put the sofa table that was there against the adjacent wall. he also moved a large silk ficus tree from the fire place wall to next to our wall unit. ..... I've also had him recently move around some knick knacks on my kitchen window ledge around, he even put a small flower vase on top of our 13" television in the kitchen..... :wacko:

 

Would anything think this is ocd connected? or did he just inherit mom's love for decorating?........ :(

 

 

Faith

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Faith- you are so funny. You sound like me- I am quite particular in the way I keep my house.

 

My dd only seems to do this type of stuff in her room. Yestarday I dusted in there, and moved some of her Knick Knacks and books around (yes I confess- to the way that I think they look nice :wacko: ) She had a fit! (not a rage, but a little fit- and put everything back exactly how she had it).

 

I think my dd always had an obsessive- type personality (but I think all four of us kinda do). But for me, it is the way she reacts. Before pandas she wouldn't have a fit- but might move the stuff back. With pandas, her anxiety level is already raised, so she can't handle this type of upset.

 

Does that make sense?

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Hmm... not sure if this along any of these lines but I wonder if I am the only one with a long drawn out bedtime routine... ds has a zillion stuffed animals in his bed and he knows where each one belongs. He is very set in how he wants each blanket (he has a bunch) and his final thing is to remind me to check on him... now most of the time he falls asleep before actually being checked on but for a while we went through having to check a lot.

 

I wouldn't think anything of the stuffed animals in that I know many kids who do this type of stuff but in him I wonder if it's all related.

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Faith,

My son is 11, but when he was younger he would do this... at Christmas time it would drive me crazy b/c he would rearrange all the decorations. It is an OCD symptom and having things just perfect in their minds. You would find all the ornaments on the tree in a nice perfect line. I had to learn to live with it . My son also has the ritual night time 'checking' and having things in the right order and perfect place before he can climb in bed. Our doctor said if your son can't fall asleep b/c the closet door is cracked (or things are in the right order), and it causes great anxiety, then it is an OCD symptom.

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When our son first got sick, he didn't have the "classic PANDAS" symptoms (no OCD, no vocal tics ala Tourette's) and was diagnosed with ARF and SC. His main symptoms back then were joint pain and seizure-like episodes / motor tics... but he had MAJOR sensory integration issues! Incredibly heightened sensitivity to light (we had to "black out" the windows and even door cracks in his bedroom so he could sleep), to smells (would run out of the room if my wife started cooking), and to taste (almost everything - including former favorite foods - tasted "too strong and wrong").

 

But as we all learn the hard way, each exacerbation is different. The sensitivity to smell and taste faded and didn't reappear. The sensitivity to light improved a little but resurges every time he has a relapse. Oh, and he has similar issues with loud noises and startles at the drop of a hat during "active PANDAS." Of course, with the OCD contamination fears, touching is out of the question during a flare, so I don't know if he has "tactile defensiveness."

 

We tried OT, but it didn't help much. Worth a shot, though!

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We got the book The Out of Sync Child Has Fun and I bought a few sensory toys from Amazon. Also the Public School called today and we have a service meeting set for 10/21 with the OT present.

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We got the book The Out of Sync Child Has Fun and I bought a few sensory toys from Amazon. Also the Public School called today and we have a service meeting set for 10/21 with the OT present.

 

That is so great - congrats on the OT mtg w/ the school. I found "The out of Sync Child Has Fun" to be a great book to help us set up some home activities. I will say that the starter book "The Out of Sych Child" and "The Sensational Child" (sp?) were more helpful to me in terms of helping me understand what was actually happening, and to what level. They are usually pretty easy to get through the library. The "has Fun" version does not explain quite as much to help you categorize your child's challenges. Oh, and we also did well with one of the blow up seat with the textured top - kind of like sitting on a ball - really helps her sit still longer. Also, another mom has recommended the Weighted Vest - that was also very helpful to us.

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