Where should start?

[MichelleB]

Hi, this is my first post. My 4 1/2 year old daughter was diagnosed with Sensory Processing Disorder when she was 2, and has been in OT for over 2 years. Before her diagnosis, I noticed that she began pulling her hair and sucking on her lower lip out of the blue one day, while recovering from a severe stomach virus. She has never been diagnosed with step, although her older brother has had strep at least 5 times in the last 4 years and her father and I both had strep two summers ago, after we were exposed to a child at her summer camp.

 

Although she's made a lot of progress with her OT, lately progress has stopped and she's regressed. After stopping the hair pulling almost completely from May 2011-December 2011 while on NAC, while her brother was recovering from strep she suddenly began pulling obsessively. She also started exhibiting extreme anxiety, hand flapping, emotional outbursts. In one week she pulled out almost 80% of her hair.

 

Since then, she hasn't stopped the pulling. After she had croup about 8 weeks ago, she began losing some of the gains she'd made in OT--she won't sit in a swing, she's anxious and convinced no one likes her. She worries about cars hitting her when we cross the street, even though they are 1/2 mile away. She flaps her hands and walks aimlessly in circles at times. I've spoken to her OT, and their suggestion is to keep ramping up the sensory diet and trying a therapeutic listening program.

 

I have an appointment to talk to her pediatrician on Monday. I'd like to explore the possibility of PANS. How should I present this? My fear is that because she has a diagnosis of SPD no one will listen to my concerns. We live in the Denver metro area.

[Hopeny]

Hi someone posted this link and I think it would make an excellent piece to bring to the doctor http://www.ocfoundation.org/PANDAS/

My 3 YO gets OT and has lots of sensory issues too. Also had croup 8 weeks ago and now coincidentially my older daughter has Lyme/PANS and we are trying to figure my 3 yo out. I hope your ped helps but you probably need a specialist. Sorry we are in the northeast so I can recommend anyone in your area. What is therapeutic listening?

[kimballot]

You can also give this article http://pandasnetwork.org/wp-content/uploads/2012/01/PANDAS-OT-Article.pdf to the pediatrician and OT as it helps to explain the connection between SPD and PANDAS, or you can read the stories from other families on this website http://www.nysota.org/node/334

 

Having SPD does not exclude the possibility of PANS. Sudden-onset SPD is a sign of PANS.

[tpotter]

You can also print this article for the doctor:

 

It correlates hair pulling with strep:

 

http://www.health.harvard.edu/newsweek/Obsessions_and_Compulsions_in_Children.htm

 

http://www.ocdhope.com/trich-hair.php

 

 

Keep in mind though, that many families are finding that strep is not the ONLY issue with sudden onset neuropsych issues. Your doc can also refer to the NIMH website:

 

http://intramural.nimh.nih.gov/pdn/web.htm

 

 

These are all highly respectable sources. If you still don't get an answer you are ok with (or the doctor blows you off, which many doctors have done to many of the members on our forum...including my family), there are PANS specialists that we can refer (there is a link at the top of this page.) But, again, keep in mind that this is an autoimmune disorder caused, apparently by an immune deficiency (can be tested for), so the child is exposed to a lot of things (may be viruses, flu, staph, mycoplasma pneumonia, lyme and co-infections, and may all need to be identified and treated. But, the articles above and provided by others are a good place to start.

[pr40]

SPD is not even a clinical diagnosis but a description of certain symptoms. Doctors that use it cannot help your child, not with PANDAS or PANS, anyway. So, I am going to repeat the advice I got a year ago when I joined this forum: find PANDAS/Pans specialist.

Best of luck

Edited January 27, 2013 by pr40

[nicklemama]

My son was originally diagnosed with spd. He was a sensory seeker. We found out this was a part of his PANS. My best advice is not to pin much hope on local help. If there is someone in the Denver area to help you that will be a bonus. I recommend seeing a PANS specialist.