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We have been searching for an OT, but can't find one. The public school is supposed to get us a service meeting for eval and have an OT there, but we are on a waiting list for now...

 

In the meantime I've been trying to explore this on my own and we have found a chiro who does some work with SPD kids, so that is good.

 

I've been reading about how this can help with rage attacks and how being more away that they are "in" their body can stop them (someone mentioned a weighted vest.)

 

What do you do for your child's sensory disorder? Are there things that help? Things that seem to always trigger?

 

For Pixie, sunlight is a BIG one. She will have a huge meltdown because she hates bright lights, so stepping into sunlight from a dark house or museum or whatever... watch out!!

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We have been searching for an OT, but can't find one. The public school is supposed to get us a service meeting for eval and have an OT there, but we are on a waiting list for now...

 

In the meantime I've been trying to explore this on my own and we have found a chiro who does some work with SPD kids, so that is good.

 

I've been reading about how this can help with rage attacks and how being more away that they are "in" their body can stop them (someone mentioned a weighted vest.)

 

What do you do for your child's sensory disorder? Are there things that help? Things that seem to always trigger?

 

For Pixie, sunlight is a BIG one. She will have a huge meltdown because she hates bright lights, so stepping into sunlight from a dark house or museum or whatever... watch out!!

 

Shae had sensory issues during her exacerberation but they went away after she had IVIG.

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Yes, my son was dx'd with SPD before we knew about pandas. He has been in OT for 9 months now (with an OT who is certified in sensory integration training). I do feel that it helps but I have no real proof as he has been so streppy since then and we have not been on prophylactic abx.

 

His issues with SPD are: auditory defensiveness (major with pandas episodes), proprioceptive input (crashes into things), vestibular input (spins), and a little tactile defensive (getting hair washed, etc...).

 

I was the one who mentioned the weighted vest and it is wonderful! I mean it is like we gave him a drug...calms right down. I send it to school for him to use, too. We don't go anywhere without it when things are bad...supposed to wear it 30 minutes on/30 min. off, or as needed.

 

Stephanie

 

 

 

 

 

 

 

 

 

We have been searching for an OT, but can't find one. The public school is supposed to get us a service meeting for eval and have an OT there, but we are on a waiting list for now...

 

In the meantime I've been trying to explore this on my own and we have found a chiro who does some work with SPD kids, so that is good.

 

I've been reading about how this can help with rage attacks and how being more away that they are "in" their body can stop them (someone mentioned a weighted vest.)

 

What do you do for your child's sensory disorder? Are there things that help? Things that seem to always trigger?

 

For Pixie, sunlight is a BIG one. She will have a huge meltdown because she hates bright lights, so stepping into sunlight from a dark house or museum or whatever... watch out!!

 

Shae had sensory issues during her exacerberation but they went away after she had IVIG.

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It makes sense that PANDAS kids would have sensory issues, because the basal ganglia receive a lot of input from the 5 senses. My understanding is that the basal ganglia has a "monitor & adjust" function for sensory info going into the brain and "what to do about that info" signals going back out to the body's peripheral nervous system...so not only are you getting garbled sensory info going in, you're getting garbled instructions coming out.

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Big sensory issues here. We saw an OT for 2 years and probably should start going again. Some things that we did at home that really helped:

 

Heavy Pressure - I made "pillows" out of felt squares and rice that were about 3 lbs each and would lay them on the girls when they were out of it.

Brushing - there is a brushing and joint protocol that you can do at home that really helps to re-train the brain.

Redirection with heavy work - I stopped trying to correct the behavior and as soon as it started up I would get them into an activity that worked their body (pushing on a wall, jumping, lifting, crab walking). This was easier when they were younger and it was just fun stuff to do.

Swinging or rocking

Wrapped tight in a blanket

 

I can't find my favorite site with great activities but I did find this one

 

http://www.livestrong.com/article/14740-de...l-age-children/

 

This is regarding the Brushing which I think helped us the most over all

 

http://www.ot-innovations.com/content/view/55/46/

 

Susan

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My son was ordered a sensory profile in the Early Childhood program in the school district. Some catagories he scored within the norm, some were not. Still, his scores were not bad enough to warrant therapy. he has an existing IEP for a severe speech disorder and the OT told me it was very comon for children w/ speech disorders to have sensory problems because the same parts of the brain are affected. They mainly did it when he was 5 because it's easier to get services, if needed, prior to enetring elementary. Once you enter elementray the rules change. They are more strict. If you want to know what areas he scored below "normal" in, let me know and I'll search for the eval.

 

In another group I'm in for autoimmune disorders, someone just posted thaty many people w/ autoimmune disorders are also higly sensituve people. I think it may be an actual diagnosis. She listed a website to view. I'll pull it up and post.

 

My son is also sensitive to sunlight. He has to wear a baseball hat a lot. His dad is the same.

 

Any sensory issues he may have don't affect his daily life. It is a totally different game when he is in an exacerbation.

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Here is the post that was left. I have not had a chance to view the website given. Been busy w/ in-laws coming. I should even be on the computer now!

 

 

"Do you seem to be more sensitive to your environment than others around you? In multiple research studies, about 15-20% of our population are found to be "Highly Sensitive People" (HSPs). Many HSPs experience auto-immune disorders.

 

To find out if you may be a HSP you can take this self-test:

http://www.hsperson.com/pages/test.htm

 

You can go to the "resources" link at www.aneweed.com to get great books about how to thrive as a HSP.

 

Also, check out my blog: aneweed.blogspot.com

 

Much love,

 

Ane Weed, M.S., LMFT"

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Hi ladies,

 

Well I have been a pediatric OT for 12 years and my 4yr old daughter has been dx with Rhuematic Chorea for 3 months. I have had to take a medical leave of absence from work to take care of her. We are now starting to think she may have PANDAS due to the OCD complications.

 

Anyhow, my speciality is SPD and SI. In my 12 years working I have never treated a known-PANDAS case or Sydenham's chorea---weird.

 

I am trying a sensory diet on my daughter...brushing, proprioception,massage, weighted blankets. We are doing sooooooooooo many alternative tx , I have no idea what is working or not.

 

I am WILDLY available for you mother's. I can give you individualized sensory diets or speak to you as a group.Let me know your needs and wants---Jennn

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Hi ladies,

 

Well I have been a pediatric OT for 12 years and my 4yr old daughter has been dx with Rhuematic Chorea for 3 months. I have had to take a medical leave of absence from work to take care of her. We are now starting to think she may have PANDAS due to the OCD complications.

 

Anyhow, my speciality is SPD and SI. In my 12 years working I have never treated a known-PANDAS case or Sydenham's chorea---weird.

 

I am trying a sensory diet on my daughter...brushing, proprioception,massage, weighted blankets. We are doing sooooooooooo many alternative tx , I have no idea what is working or not.

 

I am WILDLY available for you mother's. I can give you individualized sensory diets or speak to you as a group.Let me know your needs and wants---Jennn

 

Wow, our own online OT! I am sorry about what you are experiencing with your daughter but I am glad she has you to help her through. Thank you for your offer for sensory help, that is really cool.

 

Susan

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Hi Jenn,

 

Again, thanks for the OT offer! I have a great SPD certified OT. I just wanted to comment that you probably DID have pandas patients and the parents didn't know it. PANDAS is very difficult to dx. No one dx'd my son, I did 9 months of research to come up with it myself...

 

Stephanie

http://thelight-stephanie.blogspot.com

 

Hi ladies,

 

Well I have been a pediatric OT for 12 years and my 4yr old daughter has been dx with Rhuematic Chorea for 3 months. I have had to take a medical leave of absence from work to take care of her. We are now starting to think she may have PANDAS due to the OCD complications.

 

Anyhow, my speciality is SPD and SI. In my 12 years working I have never treated a known-PANDAS case or Sydenham's chorea---weird.

 

I am trying a sensory diet on my daughter...brushing, proprioception,massage, weighted blankets. We are doing sooooooooooo many alternative tx , I have no idea what is working or not.

 

I am WILDLY available for you mother's. I can give you individualized sensory diets or speak to you as a group.Let me know your needs and wants---Jennn

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I don't know a lot about sensory issues, but there was no doubt that during her PANDAS episode, my dd was very sensitive to sound. It was extremely unsettling for me to talk to her in a normal voice, and have her just jump right out of her skin because she was so startled. Her teacher was very concerned that she was startling even with a soft tone.

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We did OT for a year, and it helped our daughter keep up with many areas during a PANDAS episode. At the beginnning, we thought she might have SID. But recently, we reviewed her status to see if she still qualifies for the next year. Nearly everything that the OT group (who is awesome) and I, thought were sensory - were nearly all now clearly OCD. We just had to learn so much about OCD before we understood how it manifested. Really, only the sensitivity to light and sound were primarily sensory issues, and those fade away when a PANDAS episode is treated. We will not stop OT - we are now going to once a month, so that they can reserve a spot for us in case we have another episode. But in the end, our remission was gained through anti-biotics and very intense ERP and Habit Elimination Therapy.

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I know I keep asking the same question over - but I am still trying to get a handle on OCD. Can you explain what you mean that the sensory issues were really OCD?

 

My son had extreme sensitivity to sounds during exacerbation. He's always been sound-sensitive - balloons popping, blender, mixer, coffee grinder. He doesn't really seem to have that now - which adds to my curiosity about just how long has he had pandas symptoms that may have been mild or if it's a growing out of it thing.

 

Thanks,

Kathy

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