Jump to content

  • Facebook
  • Twitter
  • Google Plus
  • Youtube
  • youtube


Existing forum users need to log into the forums and website with their email address and password. Become a premium member to access enhanced forum features and visit our online store to view our products.
Special Offer: Free 1 Month Trial of our Premium Membership!


The ACN Latitudes Premium Membership provides access to over 80 premium health articles on neurological conditions along with an exclusive premium newsletter. In addition, you will have several enhanced forum features, which include helpful perks such as: no advertisements, live chat room, forum blogging, increased messaging storage, and much more! Your Premium Membership also helps to support the efforts of our non-profit organization. Start Your Free Trial!

 


Dr William Walsh Autism OCD PANDAS Depression and Methylation Article




ACN Latitudes Premium Membership




Photo
- - - - -

Is it OCD or sensory integration dysfunction?


  • Please log in to reply
8 replies to this topic

#1 Kita

Kita

    Newbie

  • Members
  • Pip
  • 1 posts

Posted 03 July 2010 - 12:22 PM

Hi, so glad I came accross this site. I have a five year old daughter who has severe issues with clothes. Nothing, and I am not exaggerating, absolutely nothing is comfortable. She will wear only one pair of trousers, shirts inside out, only one old pair of crocs, she sleeps naked (even in winter), and actually prefers to wear a T of her father and never wears underwear or socks. She says everything feels too tight. This issue with clothes started when she was 3 years old, but has worsened to this extend in the last six months. When she was 3, her brother was born, and I am currently 7 months pregnant with my third baby. (Could this be an emotional response?) For the last six months she has been constantly touching objects in a very particular manner. She says it feels as though her skin is coming off, and she is taking her skin back and putting it back where it was. She focuses this mostly on her 2 year old brother, even if he is not touching her and this leads to constant fighting. We have been getting OT for the last 3 months, who diagnosed SID, but she said she has never seen it as extreme as my daughter has it. Symptoms worsened with brushing, so we stopped it. We have been on a listening programme (Solisten) for 2 weeks during which she had to listen to special music 2 hours every day which works on the unconscious. After it stopped her symptoms and irrational behaviour worsened. We have to wait 4 weeks before we can do the programme again. She will ask the same question over and over again. After putting on the one pair of pants, she will ask non-stop: " Is it put on the right way? Are you sure? Are you sure you are sure?" At night she arranges her toys in a particular manner, she refuses to eat something that has been touched by an unfamiliar person, and refuses to drink where anybody else has taken a sip. Last year we took her to a cardiologist because she has been experiencing severe palpitations, but found nothing wrong. I believe this is due to anxiety. The OT is sure that it is not OCD, but has suggested that my daughter is put on anti-anxiety medication. We are going to make an appointment with a psychologist this week. I dread going anywhere, it takes about 2 hours to get ready and if she is wearing something I worry whether she is comfortable. Interesting fact is that she doesn't do this taking her skin back thing with strangers or other members of the family. Only with objects, even the floor, her brother, father and myself. Don't know if I should take her for any neurological tests, and I feel so helpless trying to help her. It is so debilitating. She is the most beautiful little girl and I wish i could take everything that is bothering her away from her. Today she pulled her brother's hair while we were driving to take her skin back, she anticipates any movement from him as trying to touch her and when I asked her to stop touching him but rather to focus this touching thing on me, she got emotional and asked if I want her to be dead! I love her more than anything and it is heartbreaking to hear you daughter ask such a question. Any advice?


#2 Wombat140

Wombat140

    Advanced Member

  • Members
  • PipPipPip
  • 215 posts
  • Location:Lancashire, UK

Posted 04 July 2010 - 02:49 PM

It sounds like OCD to me, although of course I'm not a doctor. The sensitivity to clothes can be a feature of various different autistic spectrum conditions - I don't think it's a known symptom of OCD. But the other things - the touching, the anxiety if this isn't done, the constant asking for confirmation - are very characteristic of OCD. I don't know much about SID, but I didn't think it was associated with those symptoms, though I'm not sure.

Has the OT explained why she thinks your daughter doesn't have OCD? It may be that she's thinking that "she has SID, not OCD" - some people can't get their heads round the idea that it's possible to have both. In fact, somebody with an autism-related condition such as SID has a slightly increased risk of OCD, compared to the general population. Ideally it should really be for a child psychologist to say whether she has OCD, not an OT, though an OT would know a certain amount about it. I'd get a second opinion if I were you.

Best wishes,
Wombat140

Born 1990. Always had slight Asperger's traits but got along fine. Severe OCD struck almost overnight in 2003. Varied randomly from month to month since then, almost gone once or twice, but never completely. Very bad indeed since spring 2012 and shows no signs of improving.

Symptoms: all sorts of things (written words, smells, things people say) mysteriously "will not do" and require a compulsion to be done before I can go on. No obsessions - in that way, and in physical nature, the rituals are almost like tics except that they're always a response to something particular. Extreme sensitivity to particular sounds, although that comes and goes over months.

Wondered if it might be PANDAS - in August 2012 I finally managed to locate a doctor who knows about it. Tried Azithromycin, co-amoxiclav (Augmentin) and tinidazole, but to no clear effect. No test results as yet - fluffed three attempts to get blood sample taken.

 

Have now been seeing homoeopath since summer 2013.  Results have been mixed, there have been definite improvements at times but they haven't lasted.  No luck at all for the last few months - in fact, since this month's remedy (Aug 2014) things are noticeably worse.


#3 peglem

peglem

    Advanced Member

  • Members
  • PipPipPip
  • 3,733 posts
  • Gender:Female
  • Location:Arizona

Posted 04 July 2010 - 05:45 PM

Please, before you go the psychiatric route, rule out PANDAS. (Pediatric Autoimmune Neuropsychiatric Disorder Associated w/ Strep) I'm not a doctor either, but it sounds like OCD to me as well.

Here is a list of obsessions and compulsions compiled by parents on the PANDAS/PITAND board:

http://www.latitudes...?...ic=6153&hl=

Many parents there are (unfortunately) very familiar with what OCD looks like in a young child and all of them are very, very helpful if you have any questions.

-Peggy, mom to 19yo PANDAS daughter w/ onset probably in infancy. Manifests w/ severe autism symptoms and currently nonverbal.


#4 Wombat140

Wombat140

    Advanced Member

  • Members
  • PipPipPip
  • 215 posts
  • Location:Lancashire, UK

Posted 06 July 2010 - 12:00 PM

That's true. I'd forgotten about PANDAS. Worth checking.

I forgot to say - if it does turn out to be OCD, don't settle for just medication. The first thing anyone should try for OCD is cognitive behaviour therapy. It's the most effective treatment for OCD by a long way, better than any medication (although sometimes it's necessary to have both). The effects are usually quite striking. Also, if you have just medication, you have to go on taking it indefinitely, and the symptoms recur if you stop. But if you get rid of a symptom by CBT, it's gone, so you can often get to the point where the OCD isn't a problem and you don't need any further treatment. I think there's an article about CBT on the Latitudes website somewhere.

Doing CBT with a 5 year old is a bit specialised, but it can be done. The best thing would be to look up whatever's the professional body for CBT in America, and see if they can give you details of somebody who's properly qualified and knows about both OCD and treating little kids.

Good luck!

Born 1990. Always had slight Asperger's traits but got along fine. Severe OCD struck almost overnight in 2003. Varied randomly from month to month since then, almost gone once or twice, but never completely. Very bad indeed since spring 2012 and shows no signs of improving.

Symptoms: all sorts of things (written words, smells, things people say) mysteriously "will not do" and require a compulsion to be done before I can go on. No obsessions - in that way, and in physical nature, the rituals are almost like tics except that they're always a response to something particular. Extreme sensitivity to particular sounds, although that comes and goes over months.

Wondered if it might be PANDAS - in August 2012 I finally managed to locate a doctor who knows about it. Tried Azithromycin, co-amoxiclav (Augmentin) and tinidazole, but to no clear effect. No test results as yet - fluffed three attempts to get blood sample taken.

 

Have now been seeing homoeopath since summer 2013.  Results have been mixed, there have been definite improvements at times but they haven't lasted.  No luck at all for the last few months - in fact, since this month's remedy (Aug 2014) things are noticeably worse.


#5 Megs_Mom

Megs_Mom

    Advanced Member

  • Members
  • PipPipPip
  • 873 posts

Posted 06 July 2010 - 01:26 PM

I second the PANDAS vote - our daughter was almost identical to yours, in terms of SID and OCD presentation at a very early age, with significant exacerbations.

The idea that "she has lost part of herself" is a trait of OCD. We did find that ERP therapy (exposure and ritual prevention - the part of CBT that addressed OCD compulsions such as your daughter has) was very helpful with a young child - she liked the idea of beating up OCD. But it was not until we treated her medically for PANDAS that we really were able to find success in gaining an almost complete remission from symptoms.

If you put your post on the PANDAS board, I think you'll get a lot of feedback. It's very common for a PANDAS child to have both sensory & OCD issues. The sensory issues we had never were responsive to OT, although we kept doing it. When we treated her medically, the sensory issues pretty much vanished. She has actually worn jeans in the last year!

#6 dcmom

dcmom

    Advanced Member

  • Members
  • PipPipPip
  • 2,108 posts

Posted 09 July 2010 - 09:23 AM

Kita-

I will second what Meg's mom has said. Your daughter sounds like she is suffering from OCD. I would aggressively pursue the possibility of pandas. My dd, at age 5, all of a sudden had MAJOR clothing difficulty. She would only wear a few select outfits, no panties, and one pair of shoes. It eventually worsened to the point of only being able to wear PJs (which she did, to school). She wouldn't eat, and had trouble sleeping. She was on edge. She was diagnosed with pandas, and after treatment, is back to wearing panties and most of her outfits (has not done any type of jean yet).

The best advice I can give you, is that if you are in a financial postition to do so- get to one of the pandas docs: Dr L, Dr K, Dr B and Dr T. They are it, for the most part. Unfortunately, pandas is not a disorder where you can go to your local doc for help. They don't get it. Where do you live?

In the meantime, I would get a strep culture (not a rapid), and have a blood test for strep titers done. You should also consider getting an experimental test for pandas by Dr Cunningham at OSU done (it costs $400- no insurance covers).

There are different schools of thought on this- but I found that when my daughter(s) were in true crisis- keeping them happy was my main concern. If that meant my dd wore footed pj's and rain boots to school (yes- luckily it was Kindergarten)- that is what we did. My goal was: some joy, eating and sleeping- during a crisis. So- if this could be pandas- if it came on quickly and has snowballed- I would work hard to get her treated medically before really pushing the ERP. Once they are helped medically, the ERP does wonders, and they shed their ocd issues rather easilyl.

I am sure you are totally overwhelmed- hang in there.

#7 jj notts

jj notts

    Newbie

  • Members
  • Pip
  • 2 posts

Posted 01 December 2010 - 03:20 PM

Hi, so glad I came accross this site. I have a five year old daughter who has severe issues with clothes. Nothing, and I am not exaggerating, absolutely nothing is comfortable. She will wear only one pair of trousers, shirts inside out, only one old pair of crocs, she sleeps naked (even in winter), and actually prefers to wear a T of her father and never wears underwear or socks. She says everything feels too tight. This issue with clothes started when she was 3 years old, but has worsened to this extend in the last six months. When she was 3, her brother was born, and I am currently 7 months pregnant with my third baby. (Could this be an emotional response?) For the last six months she has been constantly touching objects in a very particular manner. She says it feels as though her skin is coming off, and she is taking her skin back and putting it back where it was. She focuses this mostly on her 2 year old brother, even if he is not touching her and this leads to constant fighting. We have been getting OT for the last 3 months, who diagnosed SID, but she said she has never seen it as extreme as my daughter has it. Symptoms worsened with brushing, so we stopped it. We have been on a listening programme (Solisten) for 2 weeks during which she had to listen to special music 2 hours every day which works on the unconscious. After it stopped her symptoms and irrational behaviour worsened. We have to wait 4 weeks before we can do the programme again. She will ask the same question over and over again. After putting on the one pair of pants, she will ask non-stop: " Is it put on the right way? Are you sure? Are you sure you are sure?" At night she arranges her toys in a particular manner, she refuses to eat something that has been touched by an unfamiliar person, and refuses to drink where anybody else has taken a sip. Last year we took her to a cardiologist because she has been experiencing severe palpitations, but found nothing wrong. I believe this is due to anxiety. The OT is sure that it is not OCD, but has suggested that my daughter is put on anti-anxiety medication. We are going to make an appointment with a psychologist this week. I dread going anywhere, it takes about 2 hours to get ready and if she is wearing something I worry whether she is comfortable. Interesting fact is that she doesn't do this taking her skin back thing with strangers or other members of the family. Only with objects, even the floor, her brother, father and myself. Don't know if I should take her for any neurological tests, and I feel so helpless trying to help her. It is so debilitating. She is the most beautiful little girl and I wish i could take everything that is bothering her away from her. Today she pulled her brother's hair while we were driving to take her skin back, she anticipates any movement from him as trying to touch her and when I asked her to stop touching him but rather to focus this touching thing on me, she got emotional and asked if I want her to be dead! I love her more than anything and it is heartbreaking to hear you daughter ask such a question. Any advice?



#8 jj notts

jj notts

    Newbie

  • Members
  • Pip
  • 2 posts

Posted 01 December 2010 - 03:33 PM

Hi

I am so glad I have come across your message. My daughter is also 5 and she has the same severe issues with clothes especially knickers and socks. Leaving the house can be so problematic. She has one old dress she wears for bed and one to go out in. Everything else is unbearable for her. The issues started last Feb when my daughter woke up with what we thought were night terrors and by April she had what we considered full on OCD where she was hand washing, kissing things, ordering things and many more classic OCD rituals.

We are currently seeing a therapist at Camhs once a month who advise us she is too young for CBT and no drugs are given in the UK till age 16. They have not diagnosed OCD and seem to be reluctant and lacking in knowledge to deal with it at such a young age. Basically we get to chat over whats going on and they tell us how to manage the situation (as if its a behaviour problem) which it is far from not. We also have touching things, issues with eating and palpitations when she is a really anxious state. She is also very abusive, has mood swings and outbursts. Social situations can be very tricky and embarassing. PANDAS has been mentioned to me a few times on forums as it came on quite suddenly and we have peaks where its out of control and then dies down. She also came home with wet knickers and was constanly going to the loo when it first started which is another sign I believe.

I am wondering how you have got on with your daughter and if you have found any help. We have made an appointment with the paediatrician. My GP didn't know what Pandas was! I wondered if there is anybody that knows a Pandas specialist in the UK or how we can get tested. We are happy to go private.

My daughter used to be an ultra confident and happy little girl who has changed into a very anxious/abusive little girl full of worries. Its heartbreaking.


Hi, so glad I came accross this site. I have a five year old daughter who has severe issues with clothes. Nothing, and I am not exaggerating, absolutely nothing is comfortable. She will wear only one pair of trousers, shirts inside out, only one old pair of crocs, she sleeps naked (even in winter), and actually prefers to wear a T of her father and never wears underwear or socks. She says everything feels too tight. This issue with clothes started when she was 3 years old, but has worsened to this extend in the last six months. When she was 3, her brother was born, and I am currently 7 months pregnant with my third baby. (Could this be an emotional response?) For the last six months she has been constantly touching objects in a very particular manner. She says it feels as though her skin is coming off, and she is taking her skin back and putting it back where it was. She focuses this mostly on her 2 year old brother, even if he is not touching her and this leads to constant fighting. We have been getting OT for the last 3 months, who diagnosed SID, but she said she has never seen it as extreme as my daughter has it. Symptoms worsened with brushing, so we stopped it. We have been on a listening programme (Solisten) for 2 weeks during which she had to listen to special music 2 hours every day which works on the unconscious. After it stopped her symptoms and irrational behaviour worsened. We have to wait 4 weeks before we can do the programme again. She will ask the same question over and over again. After putting on the one pair of pants, she will ask non-stop: " Is it put on the right way? Are you sure? Are you sure you are sure?" At night she arranges her toys in a particular manner, she refuses to eat something that has been touched by an unfamiliar person, and refuses to drink where anybody else has taken a sip. Last year we took her to a cardiologist because she has been experiencing severe palpitations, but found nothing wrong. I believe this is due to anxiety. The OT is sure that it is not OCD, but has suggested that my daughter is put on anti-anxiety medication. We are going to make an appointment with a psychologist this week. I dread going anywhere, it takes about 2 hours to get ready and if she is wearing something I worry whether she is comfortable. Interesting fact is that she doesn't do this taking her skin back thing with strangers or other members of the family. Only with objects, even the floor, her brother, father and myself. Don't know if I should take her for any neurological tests, and I feel so helpless trying to help her. It is so debilitating. She is the most beautiful little girl and I wish i could take everything that is bothering her away from her. Today she pulled her brother's hair while we were driving to take her skin back, she anticipates any movement from him as trying to touch her and when I asked her to stop touching him but rather to focus this touching thing on me, she got emotional and asked if I want her to be dead! I love her more than anything and it is heartbreaking to hear you daughter ask such a question. Any advice?



#9 Ozimum

Ozimum

    Advanced Member

  • Members
  • PipPipPip
  • 284 posts
  • Gender:Not Telling
  • Location:Australia

Posted 01 December 2010 - 05:30 PM

Hi jj notts - In view of the suddenness of the onset of these symptoms it sounds like PANDAS to me - If there's a PANDAS specialist in the UK you need to get your daughter there - Don't mess around with GPs etc who don't have a clue. Biomed/DAN! doctors are much more likely to have heard of PANDAS, if our experience in Australia is anything like the UK. I think the ARI website may list international doctors. Do please go to the PANDAS forum and go through the useful pinned threads at the top - there's plenty of useful info there. You will find many knowledgeable people over on the PANDAS forum too.

Good luck! PM me if you'd like.
Ozimum

Edited by Ozimum, 02 December 2010 - 05:16 AM.





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users