Jump to content
ACN Latitudes Forums
Sign in to follow this  
Kita

Is it OCD or sensory integration dysfunction?

Recommended Posts

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?

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.org/forums/index.php?...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.

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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?

Share this post


Link to post
Share on other sites

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?

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  



  • Announcements

    • Administrator



      Forum Community Guidelines

      Our forums provide support for people dealing with neurological and related issues. Everyone joining this community should find it a safe haven where they are treated with respect, civility, and understanding.

      Your agreement as a user: You agree that you will not use this forum to post or send messages that are knowingly false, inaccurate, abusive, vulgar, obscene, profane, or sexually oriented. Text should not be defamatory, harsh, accusatory, intimidating, slanderous, an invasive of a person's privacy, or violate any law. Doing so may lead to you being banned (and your service provider may be informed). The IP address of all posts is recorded to aid in enforcing these conditions. You agree that the webmaster, administrator, and moderators of this forum have the right to remove, edit, move, or close any topic at any time should they see fit. You agree not to post any copyrighted material unless the copyright is owned by you or by this forum/website. Advertisements, solicitations for services or business, most research requests, as well as any type of research on the content of these forums by third-parties, are prohibited. Unauthorized use or reproduction of posts on these forums is not allowed. Any user who feels that a posted message is objectionable is encouraged to contact an administrator.

      Announcements, media requests, and research requests

      These need administrative approval. Please send to an administrator before posting.

      Inappropriate content

      Members are here for support and education. Check the list below for types of posts that are not allowed: Advertisements Flames or messages meant to intimidate, criticize, or harass others Threatening or obscene messages Messages discussing a private message (PM) from others Copyrighted materials that you do not own the rights to, except educational or research articles Messages containing or condoning illegal acts; also messages of suicidal intent Direct discussion of politics (please avoid) Specific or strong religious views Requests for donations for other organizations unless approved by administrator Solicitation of members for research, media projects or other projects, without prior administrative approval About links for other websites:

      You may have links in your profile as long as they do not violate our guidelines (above). Links within a post to online resources and articles are generally OK. Do not post links to other forum communities with the aim of soliciting other members to that community, thereby taking them away from this community.

      When a guideline is violated

      If you violate a guideline, you will be contacted by PM or email. We will try to resolve things amicably. We don’t like to ban members and rarely do, but this is an option.

      Updated March 19, 2010
    • Administrator



      Disclaimer

      The ACN Online Discussion Boards are intended to provide helpful information and allow sharing of ideas. Postings should not be considered as medical advice. All users should consult with their healthcare professional for questions or medical decisions.

      Users must accept full responsibility for using the information on this site and agree that ACN, Latitudes.org, advisory staff or others associated with the site are not responsible or liable for any claim, loss, or damage resulting from its use. Please remember that we do not actively monitor all posted messages and cannot be responsible for the content within. We can also not guarantee that access to the site will be error-free or virus-free.

      Reproducing any document in whole or in part is prohibited unless prior written consent is obtained. Web pages may be shared when passed on with the URL.

      Information posted on the Forum is done so voluntarily and will be accessible to the public. The material posted may be used by ACN (without the identity of the user) for publications or educational purposes. No compensation will be provided for the use of this material.

      Note: ACN is providing this service with the expectation that users will abide by the guidelines provided. We reserve the right to monitor postings and remove or refuse inappropriate and questionable material, as well as remove dated postings at our discretion, for any reason.

      Privacy Policy

      When you register with the Forum, you need only give your email address, which is available only to the Adminstrators and will not be shared on the Forum site or with others in any format. Forum users will see only the user name you choose to provide.

      Our web server collects and saves default information logged by World Wide Web server software. Our logs contain the date and time, originating IP address and domain name (the unique address assigned to your internet service provider's computer that connects to the internet), object requested, and completion status of the request. We use these logs to help improve our service by evaluating the "traffic" to our site in terms of number of unique visitors, level of demand, most popular page requests, and types of errors.

      You have the option of enabling to save your username and password data when you are accessing interactive parts of our websites, to allow your web browser to "remember" who you are and assist you by "logging on" without you having to type your username and password repeatedly. This is known as a cookie and it can be enabled or disabled in your control panel. Cookies are small files stored on your computer's hard drive that are used to track personal information.

      Except for authorized legal investigations, we will not share any information we receive with any outside parties.

      Updated March 19, 2010
  • Help us learn if blood type has a correlation with PANDAS/PANS   78 members have voted

    1. 1. If you are the biological mother of a child diagnosed with PANDAS or PANS (or you believe the child has PANDAS or PANS), please select your blood type below:


      • O +
      • O -
      • A +
      • A -
      • B +
      • B -
      • AB +
      • AB -
      • I Don't Know

    Please sign in or register to vote in this poll. View topic
×