Obsessive Compulsive Disorder (OCD) in 4year old, we are desperate please help

Discussion in 'General Parenting' started by Matty's Mummy, May 7, 2008.

  1. Matty's Mummy

    Matty's Mummy Member

    Hi I’m new here just found the site.
    My son is only 4 years old, this is so upsetting and worry to see my son go through this.
    What he is doing, all revolves around urinating, please dont dismiss this as just toilet training issues, he is well and truly toilet trained.
    It started when he would do a #2, he would breath into his hand and flick his fingers as if to flick the breath he just caught away.
    I asked him what he was doing he said “getting my breath out” it’s much worse quite quickly.
    Then he started to hyperventilate into his hands and flick them every few seconds, now he is doing it in the bath and shower as well. So in the bath he would breath hold then blow into his hands and then dip his hands in the water (while still holding onto that breath) then flick his hands out of the bath.
    Tonight in the shower he held his hand in a tight fist over his mouth while hyperventilating,
    Also he is weeing all over the house, he says “oops my wee just came out” but it’s not he has been toilet trained for over a year.
    My best guess is, he doesn’t want to go to the toilet because he is anxious over what is happening.
    He is fine to wee on the grass outside.
    When we were out I took him to the bathroom at the shops, just to wash his hands, not to use the Loo, he did the same thing so it’s just bathrooms and toilets.
    The only thing I have found online about children this young with Obsessive Compulsive Disorder (OCD) is PANDA, where the Obsessive Compulsive Disorder (OCD) is caused from a Strep throat infection, he has been sick a few times this year. Would strep throat clear without Antibiotics???? There has been a few times when he was sick throat infection and he hasn’t had Antibiotics. So if it was Strep throat would it clear without antibiotics or would we know for sure it was strep throat as it wouldn’t clear unless he was on antibiotics.
    Oh and with PANDA Obsessive Compulsive Disorder (OCD), the main problems children have is with urinating.
    I don’t know if what I’m reading is right, please any thoughts you have please post. We are so desperate for help./
    We have an appointment with our Doctor tomorrow, to get a referral to a Paediatrician.
    I rang the Pead and it’s a good month and a half before we can get in.
    We have put posters up (ABC….) in the toilet it has helped a bit, meaning today he would go back in their but only with me as well.
  2. SRL

    SRL Active Member

    Hi Matty's Mummy. I know this must be hard, seeing symptoms in your child that you have struggled with yourself.

    Because what you are describing is hand flicking, I'd like you to take a look at this list of tics and see if there's anything else on there that you're seeing.

    This is a site on Tourette's Syndrome--I'm not saying that's what your son has because of course you should see your doctor, but there's a lot of info on Obsessive Compulsive Disorder (OCD) there.

    Developmentally is your son meeting his milestones? Any delays in speech? How about extreme sensitivities to foods, clothing, lights?
  3. smallworld

    smallworld Moderator

    In terms of your questions about PANDAs, strep can clear without antibiotics (but when detected, strep is always treated because of the rare side effects). You would need to have your son's strep titres tested. If they are high and he is exhibiting Obsessive Compulsive Disorder (OCD) behaviors, then a diagnosis of PANDAs might be made. Be aware that PANDAs Obsessive Compulsive Disorder (OCD) and garden-variety Obsessive Compulsive Disorder (OCD) are treated in the same way -- with Cognitive Behavioral Therapy and/or medications like SSRI antidepressants.

    Here's a link to some good info on PANDAs:

  4. Matty's Mummy

    Matty's Mummy Member

    He has meet all milestones at good time…
    No speech delays but oh yes extreme sensitivities to foods, clothing, light and sounds.
    Even as a new baby, if I took him to the shopping centre he would scream and scream. I worked out if I covered him in the pram from the fluoro lights he was ok.
    Food is really bad, he has only just stoped sicking up at the site of new foods.
    He would throw up as soon as he spotted a different/ new food on his plate.
    He is the same with any new clothes, cries and carries on, if I leave them sitting around the house, don’t make a fuss that they are new, eventually he will just wear them.
    At 2 and 3 years he wouldn’t’ wear long sleeves.,.. No matter how cold.
    I took him to play group, (where mums and children meet up kids play mums chat) Matty @ 4years old cried and cried cause of the noise of the musical instruments the kids wear playing with. Yet at Kindy his teacher has never seen any of this.

    I have 4 other children my eldest is 18year he suffered from vocal tics for a while, around the time of Bone graft surgery, I think it was stress related, he also did a strang movement that was like he was shooting hoops ( acting like he was playing with a basket bal while walling through shopping centres, and calling out odd noses)
    So I do have a very limited understanding of tics, I never even thought of them for this though.
    Might make more sense than the Obsessive Compulsive Disorder (OCD) I was thinking. Because the flicking, catching of breath… is all isolated with no other movements… going on.
    Although I do think he might have Apsergers, as his brother also has.
    But I think those things are different to the flicking /catching of breath…
    For instance, if he asks for a ice cream, if I get up to get it he can have a major melt down because in his mind his Dad was getting it, and it’s not a brat thing where he is just being difficult. He cries so bad and so hard you can see it is totally traumatising him. Until I put the ice cream back and his father gets it…
    There is a whole list of things. I better get them on paper for the Pead visit.
    I’ll have a look at the links thank you so much for a speedy reply. I feel calmer already, just having off loaded it.
    PS he is doing these as well
    Opening his mouth wide or gritting it shut
    Whistling - he only just learnt this so I wasn’t concerned but then tonight he started doing it with the blowing while on the toilet.
    Would these be what my son is doing ?, they haven’t gone into any details.
    Thank you for the link I think I read that one but lost it and couldn’t’ find it again
    So you are saying we can still have him tested for Strep I’ll ask about that tomorrow
    There is just so much going on here. I put of the diagnoses of Apsergers, for far to long and no we have this it’s going to be hard I think getting the right diagnose for him.
    Oh I just realised that is the most important part it’s getting the help and therapy, that is important.
    Sorry I have rambled on so much
  5. SRL

    SRL Active Member

    Those do sound like tic behaviors to me--maybe bladder and breathing. Bowel is hard to determine because kids with sensory sensitivities that you are describing often have bowel problems as well for that reason. My difficult child was doing vocal and respiratory tics and I didn't recognize them as such either.

    If you already have a child on the Autistic Spectrum then I would suggest looking in that neighborhood first. Having one child on the spectrum increases the liklihood that siblings will be as well. Parents often report that it's not as easy to recognize in sibs because often they will present somewhat differently. Also, if the child is borderline on meeting the criteria, it's really hard to know what you're looking at.

    The sensitivities sound like Sensory issues and like tics are common with Autistic Spectrum, but not a part of the diagnostic criteria since all kids don't have them.
    Here's an article:

    I'd recommend you pick up a copy of this book even if you have to order it. Are you in the UK? An assessment by an occupational therapist is indicated here--therapy for sensory issues works best when it's tackled at home, therapy, and school.

    Some kids will hold it together with sensory issues at places like school or out in public, but often it causes anxiety for that situation when they do. My difficult child would hold it together in loud noisy assemblies at school and then melt down the moment I picked him up at school.
  6. smallworld

    smallworld Moderator

    You should have his strep titers tested, which involves a blood test rather than a throat swab. It is explained in the link I posted above.

    Good luck.
  7. Matty's Mummy

    Matty's Mummy Member

    Thank you both again,
    Hey what do you think of this?
    I was just talking to my sister, well crying you know… and she said maybe it could be a urine tract infection.
    You know I had thought that at first when he started to wee everywhere cause he was, holding on, so long and then would wee himself.
    We have an appointment tomorrow afternoon at the Doctors, so I though I will get a specimen jar, first thing in the morning and have that tested before we even see the Doctor.
    We still have all the other things going on and will have to make sure I get onto this, and it still might be an Obsessive Compulsive Disorder (OCD)/tic’s but just maybe it’s not. Oh I’m hoping it’s not, praying it’s not.
    I know I want to believe anything right now, cause it feels a whole lot better than the other, but as well it really does make sense.
    And if it’s not well I’ll just fall apart, come on here and say HELP ME I REALLY CANT DO THIS!!!!
    He has had a few times when I have thought he has felt a bit warm… and I know you can have Urinary Tract Infection (UTI) and not have any pain at all, maybe he has just a little bit of pain. I dont know but will update as soon as I know. At least I’ll be following up all this other behaviours he has. I have been putting it all off for too long..
    Oh and I’m in Australia in the real outback an hours drive on open outback roads, to the nearest hospital, where the Doctor is on call and they aren’t’ equipped for births… then a 3.5hour drive (about 400kms) to the major hospital and target lol, we have a small grocery store here about 6 half isle, with bad fruit and vegies.
    Well enough raving on from me.
    Tonight was really bad, oh and today he wont even pull his paints down to wee he is just weeing through his clothes. It’s really scaring me so I’m grateful to half think my sister is right.
  8. Matty's Mummy

    Matty's Mummy Member

    We are back from the Doctor, it went really badly, the Doctor told me he was Playing games with me, and to toughen up on him, tell him NO! MORE WEEIN GON THE FLOOR.. He even turned to Matty and said your just playing games with your mother, no more weeing on the floor you’re a big boy, on and on he went.
    I cant even type it all out I feel sick to my stomach I let it happen. I know what this Doctor can be like, but I just thought he would get it…
    He did end up saying if it’s still happening in a months time come back.
    Well it’s already been to long and we are going to head into MacKay 3.5 hour drive to the city, and go straight to the hospital. The doctor even tried to say “he is doing it to get attention“.
    I said no he gets plenty and he said ”that is just my point”
    Well I’ll let you know how we get on.
  9. Marguerite

    Marguerite Active Member

    You give me furiously to think, as they say. Oh, and by the way - that doctor's an idiot. He might be good at medicine, but he's got a lousy bedside manner. He has totally missed the point.

    So here are some of my ideas and reasoning.

    First - this could be a Urinary Tract Infection (UTI). Your sister may be correct. Did the doctor do a dipstick test on a urine sample? If he has a Urinary Tract Infection (UTI) then a dipstick test should have shown positive for blood and protein but MAY not have. The pH would have been low, unless you've been dosing him with Ural or similar. So, if the doctor did a dipstick test and he said it was OK, it reduces but doesn't totally eliminate (in my book) the chance of this being a Urinary Tract Infection (UTI).
    If it's a Urinary Tract Infection (UTI), and his first one, then it could take longer for sufficient damage to develop, for the dipstick test to be positive for blood & protein. If it's a Urinary Tract Infection (UTI), it could account for him seeming to get worse in his behaviour - a reluctance to pull his pants down could be because it's got to the frequency stage and he can't control it properly. This can come on fairly suddenly, if the infection has been grumbling along for a few days or more. And if it's causing pain then the pain is likely to be getting worse very suddenly, along with the frequency and loss of control. Have you ever had a Urinary Tract Infection (UTI)? Remember how the burning pain is right at the end of weeing? It's like a burning, almost bearing down pain which feels like your bladder trying to wring out the last few drips of acid. Boys are less likely to get a Urinary Tract Infection (UTI) because they have a few extra cm of protection, but they also have those few cm of potential agony, too. To a young child this would be very frightening. Let's hope your sister is wrong. And a quick note - difficult child 3's good friend, another high-functioning autistic kid who lives nearby, had chronic UTIs for months before the doctors realised. In his case it was due to a congenital defect which was easily corrected surgically. He is now doing great. Once it was diagnosed, he was on prophylactic antibiotics plus alkalinisers which all stabilised him until the surgery.

    Second - Asperger's plus Urinary Tract Infection (UTI) needs to be considered. If your child is possibly Aspie, then he may seem fine especially in his own space, until something comes along and rocks his boat. So a Urinary Tract Infection (UTI) could trigger some very strange-seeming behaviours as he tries to accommodate something new and unpleasant. He could be trying to find his own ways of coping (as a lot of Aspies do, the brighter ones especially). For him, the blowing/breath-holding trick could be something he coincidentally did to begin with and he might have thought it helped. If he has Asperger's + a Urinary Tract Infection (UTI), this would be a very unpleasant combination which would make him very uncomfortable as well as very anxious and confused.

    Third - it COULD be PANDAS, but it IS rare, and given your family history the chance of this being Asperger's is frankly higher. Obsessive Compulsive Disorder (OCD) for Asperger's (or any other cause) or Obsessive Compulsive Disorder (OCD) in PANDAS - treatment is the same. But in PANDAS, the Obsessive Compulsive Disorder (OCD) can be a lot more episodic, it can fluctuate a lot more. This could be simply an exacerbation of Obsessive Compulsive Disorder (OCD), stimming, tics etc in Asperger's (for any number of reasons, including infection) or it could be onset. Given that medicine, like a lot of science in general, uses the principle of Occam's Razor (the simplest, most likely explanation is the one we'll give most credence to, at least to begin with) I'd be putting PANDAS on the backburner.

    You can recover from strep without antibiotics. Usually your body will deal with it. A lot of people harbour strep in their throats and in their nasal tissues - it's one big reason doctors are supposed to wear masks during surgery, to avoid any strep they're carrying from getting into the wound. A strep bug in your throat is one thing, but in a wound the strep is forced to grow without oxygen and it then behaves differently and nastily. If there's a staph in there as well you can get flesh-eating conditions (which should respond to antibiotics unless it's muti-resistant staph, aka MRSA). Serious stuff. I get angry when watching those doctor shows on TV, especially those plastic surgery extreme makeover ones, and you see the surgeon with his nose outside the mask, as if he thinks he is too important to possibly be carrying strep.

    But that's not an issue for Matty. Strep in the throat is just one of those infections that everyone gets at some stage.

    So, what to do now?

    If the urine specimen has NOT been sent in for pathology, then I would consider trying to get one done, if this doesn't improve or seems to get worse over the next few days.

    If you think Urinary Tract Infection (UTI) is sufficiently likely, and especially if he gets worse in the next few hours (which in my mind would make a Urinary Tract Infection (UTI) much more likely) then start dosing him with something to bring his urine pH back to normal. In a Urinary Tract Infection (UTI), it burns because the bacteria are making acid as waste product, and this acid begins to break down the mucosa lining the urethra. The damage begins closest to the exit sign and then works its way back up. The acid also causes local inflammation which then stops the various sphincters from closing properly, at which point incontinence begins. Normal urine pH should be around 6, but in a galloping Urinary Tract Infection (UTI) it can drop to 5. Water pH should be around 7, although it will vary. The aim is to try to get his urine pH as close to 7 as you can. Stop dosing if it goes over, and begin to dose again when the pH drops to 6 or when pain begins to reappear. You won't kill any bacteria in there, but you will neutralise the acid and stop the pain. This can even bring back some control again. The dosage varies depending on how bad the infection is, so the best thing is to try to monitor the pH by testing with pH paper. If you haven't got any, you have to monitor the symptoms and stop dosing as symptoms disappear, then dose again as symptoms begin to reappear. You would need his cooperation for this because he would have to tell you if he felt it beginning to be uncomfortable again.
    Do you have a pharmacist nearby, or is that at the hospital? If you don't want to make an hour's drive again so soon but haven't got any commercial urinary alkalinisers (such as Ural or Citravescent) you could mix up a teaspoonful of sodium bicarbonate in water. Make sure he's drinking lots of fluids, he has to drink a lot extra if he has a Urinary Tract Infection (UTI). The carb soda tastes soapy, he probably won't like it. You could try to disguise it with cordial. Or if you have any Berocca, try one of those. I've noticed they seem to alkalinise too. I could be wrong on the Berocca though.
    A pharmacist should also be able to sell you pH paper. Or if you have a soil testing kit, you might be able to adapt that.

    If this is NOT a Urinary Tract Infection (UTI) but is simply an increase in Obsessive Compulsive Disorder (OCD), then maybe you need to put him back into Pull-Ups for a while. Alternatively, you could use sanitary pads inside his underpants. It's not uncommon for kids to sometimes lose toiletting skills for various reasons. Often if they're going through a major change, or learning a new skill, they can backslide in other areas for a while.

    Looking at your description of him, I'd put money on the likelihood of Asperger's. The food issues would fit with sensory integration problems. Same with the new clothes. A lot of what you describe would fit with Pervasive Developmental Disorder (PDD) in some form.

    You mentioned needing to write it down for the paediatrician - here's an alternative. Go to www.childbrain.com and look for their online Pervasive Developmental Disorder (PDD) questionnaire. It's not officially diagnostic (it's not allowed to be) but you can plug in Matty's details, answer the questions (they give a guide on exactly how to answer, if you're not sure which way to go on some of them) then you can print out the result (which also prints out the questions plus your answers) and take it to the pediatrician. Or if you have to go back to the GP, see what he makes of it. We had to deal with a GP like that, when trying to get difficult child 3's referral. The GP didn't think there was anything wrong but gave me the referral after I said, "If nothing is wrong then the paediatrician will confirm it. But if something is wrong, I'd rather know sooner."
    Some months later we had to see the GP when difficult child 3 was running a high fever and I needed to know if he had tonsillitis or ear infection. The doctor said, "If he has either of those he will let you know, because he will be in pain."
    I said, "He doesn't let me know, he's had them before and the only sign was a high fever. He doesn't respond to pain, he ignores it. It's part of the Sensory Integration Disorder (SID) component of his autism."
    The doctor said, "Don't be ridiculous! He's not autistic!"
    I reminded the GP that it was the paed he'd referred us to, who diagnosed autism.
    This wonderful GP then shouted at me, as I was walking back out into the waiting room, "Stop trying to find things wrong with your kids!"

    Did you get the referral? I hope so. I know the doctor said to go back in a month if he's no better - I'd go back if he gets any worse. If he doesn't get worse, it could be a good sign, that it's maybe not a Urinary Tract Infection (UTI). In which case, nappies until the paed appointment shouldn't be too onerous, I hope.

    Is Mackay your one hour drive, or the 3 and a half hour drive? It's quite a hike, whichever it is. Lovely country, though. We were there for a few weeks about 20 years ago.

    husband was looking over my shoulder as I began this and noticed your sig. He commented, "She calls her 2 year old Downs son a easy child? Crikey, she's got her hands full!"

    So you have his sympathy too, as well as mine.

    I hope things ease up a bit for you, or at least don't get any worse. Keep us posted on how you get on.

  10. Matty's Mummy

    Matty's Mummy Member

    Sorry it's so long

    Thanks for the post I read through, this morning and haven't had a chance to reply

    Oh lol I had to laugh and show my husband,. The thing is as scary as it seemed life might be having a child with Ds (down syndrome) it's been a breeze one of our easier baby, and now toddler, he is our perfect child. We could never have believed this when we first found out, we had to live, it, but having a child with Aspergers now that is really tough, day in day out.

    When I knew in my heart that Matty had Aspergers or something along the lines, I cried so hard, I said to my husband 'I just cant do this I don't want to be a mum to a child like this again , how am I going to do it, I think I cried for 2days before being able to pick myself up. I think after having the first one and getting through (then) 16yrs I just felt I couldn't' face another 16years of THAT!.
    Oh the crying, if we drove the wrong way home from school, had the wrong cereal, and I hate that feeling when you hear that particular tone in their voice and you know your day is going to be screwed, Know what I mean??
    Anyway back to Matthew, well we couldn't' go out of town, our daughter had school stuff on this weekend I forgot about, poor child.
    Thanks for all the info on the Urinary Tract Infection (UTI), I'm not as sure on this being it today. Oh I just go around in circles.
    He has been much better today, he has been going outside to wee, and has at least pulled his pants down to wee..
    He has calmed the breaths down a lot too, not as many or as intense, still it's there and a problem. Tonight in the shower I took him in with me, he didn't stand their and wet himself he did one in the shower and held onto it as he did one, so at least he can touch himself again and didn't feel as though he had to breath into his hands. He did do some huge breaths in and out…
    Then in the shower he was breathing into his hands and flicking them only he had to flick them out, by opening the shower curtain, so the breath was now out of the shower.
    Then after doing this a few times I just said to him ‘ ok Matty that is enough now, you don't have to keep doing this' when that didn't work I said 'Matty you have done lots of breaths now, how about you stop and use your hands to wash you hair?' he was ok with this, but then tried again once he finished so I told him ' ok that is it you can play with your toys I think 5 breaths is enough' and he stopped for good. I hope I haven't put into his head '5 times' and he has to do it that many times now, but then again 5 is better than continuos.
    Ok So new thoughts have so many theories, but I just realise what I keep doing is wanting to isolate each odd behaviour, hmm but maybe they are all just one thing or I guess he could end up with a duel diagnosis.
    So we know Matty has light sensitivity, sound, food , clothing, oh and did I mention he is back to bolting on us? When we are at the shops he just takes off, doesn't' look ran across the road lucky no cars, we started using a harness at 3years old and haven't needed it for ages and now he is going it again.
    Also I don't think whne I posted on here I posted about Matthew's broken arm. I had just posted on one of those places that Doctors reply to, of cause no-one has replied then I posted here, I didn't post everything.
    13th March husband was on the trampoline with Matty, he double bounced him and when he landed on the mat he fell badly. We didn't' know if it was broken. I drove him to the ambulance that weren't there they have a wall phone… anyway I said to them we would take him to the hospital save the ambo's coming from home. At the hospital it was really bad, they walked us into the x-ray room, no lights were on, it's night by this time, there was soft light from another room and the x-ray thingy, they stood Matty next to part of the machine and then as they pulled this hug camera /light thing down he bolted. I have never seen fear in anyone like I seen in his eyes, pure terror.
    Anyway they said it wasn't broken they did heaps of x-rays and he was in so much pain. They sent us home saying bring him back Monday (this was now Thursday night) if he is still the same. They didn't put it in a sling or give us back the sling we had it in.
    So then the next day we left for MacKay (that is our 3.5hour drive) stayed at my mums that night, took him to the hospital Saturday. Silly crazy we talked ourselves out of going straight to the hospital after he stared to move his fingers…
    The hospital found, it was a small fracture near his elbow.
    So after that is when the, breath holding for #2's started, we still didn't' think this was the cause because during all this Kids at Kindy had called him 'Poo' and this is terrible but I had said to him a few times, 'Matty come and brush your teeth they smell, oh like sticky poo' why oh why did I say that word just silly talk.
    So we had thought, and this is why we didn't' think to much of it and let it go, that when he was doing a #2 he could smell it and maybe he thought the smell was entering into his breath. Well this still sounds right to me, but then it's just gotten so out of hand and kept developing.
    I hate that I said that o him, I had said it many times to, 'oh Matt your breath smells lets brush your teeth' not always with the poo word but sometimes. Mind you I could say that to my daughter easy child child and she wouldn't' have done anything like it, so while I blame myself I also do feel that if he wasn't the way he was it wouldn't' have happened, maybe that just sounds like I'm not taking responsibility or maybe I'm saving myself from going insane with guilt, either way right now I have Occupational Therapist (OT) hand onto that thought, so whoever is still reading please be kind to me, I'm sure with my Obsessive Compulsive Disorder (OCD) I'll make myself suffer more than necessary. Ohhh this is so hard, but I have to find a way to make it better for him.
    SO then this #2 thing was pretty much at one level not really very intense, but then the weeing thing started and I thought maybe my sister is right, that the weeing might have been isolated as well. But now that he calmed down and Matty has said he isn't' in any pain when he goes, I'm doubting that is it now.
    So now their you are I did this to him, he has all these sensitivities and I do that.
    And ther is more the whole food thing, not the sicking up part. He also has behaviour problems when eating different foods. We first discover the 282 in bread after watching the news, he was around 2yrs. Had been having big melt downs head butting the ground… after stopping that bread he stopped and we had a different boy, well until the next thing, light shopping centre lights…
    So the connection with this new stuff is. We just realised this today!
    When Matty had his broken arm (plaster removed after 2weeks) my mum started to buy him lots of treats like ice-cream, and iceblocks…then when we were home I kept it up and out of the ordinary I brought a few packet of the wafer biscuits, he's been having these they actually ran out 2 days ago, he's had them for a good week and way too many each day, as you do with a child that has limited foods to eat, you don't seen to care if they fill up on junk.
    so today we feel like we had yet another light bulb moment! Maybe the bad chemicals in the food haven't helped all this escalate and now today 2days after the stuff is leaving his system he is getting better.
    I do think that this might be part of it, not all and certainly not the cause.
    So in summery
    We have a child with sensory problems as well as the suspicion of Aspergers, food sensitivities, kids at Kindy say he smells like Poo, a mothers that enforces the Poo thoughts by saying he has poo breath, (I honestly only said it like in a ‘oh come on brush your teeth and in a fun way said Oh stinky poo….) but I feel like **** and know it's enforced it.
    Oh my poor boy.
    There is a nice Doctor I can go see on Thursday or sooner we will see, if he keeps getting better we will wait till Thursday if not I'll go over sooner, it's about an hours drive there.
    I'm sure I will get a referral from him, I have spoken to the Pead a few moths ago about seeing her for Matty when I had my other son there, so she already thinks we need to see her.
    ‘Well I have rambled on long enough.
    It's lovely to have found this forum, I found it through the Oprah Web site lol
  11. Marguerite

    Marguerite Active Member

    Don't blame yourself about the occasional word that seems to trigger an obsession - anything could trigger it, you can't mentally analyse everything you're going to say, before you say it!

    I did find, however, I was self-censoring a lot of what I said to difficult child 3, to avid confusion. You know how you have to avoid sarcasm, or anything ambiguous? I would say, "that is correct," instead of "that is right," to avoid confusion with "left" and "right".

    It does sound to me like he has a lot of issues that could all connect to Pervasive Developmental Disorder (PDD). You could get a separate diagnosis for each one (Sensory Integration Disorder (SID), Obsessive Compulsive Disorder (OCD), ADHD, Pervasive Developmental Disorder (PDD)) but Down Under you're more likely to get a doctor telling you it all comes under one umbrella. Doesn't mean you're not dealing with it, it's just another aspect of it though. But whichever way it goes - doesn't change what you deal with.

    The broken arm could well have increased his anxiety. And I remember difficult child 3 having problems along these lines - he was about 3 and being tested for hearing (we'd been dobbed in to DOCS). He was desperate to go to the toilet but as I opened the door, a woman turned on the hand dryer. difficult child 3 panicked and refused to go in, he was screaming in terror. I tried again after the hand dryer was off and the woman had gone, but he wouldn't go in. And he was getting increasingly desperate, plus we were an hour's drive from home.

    After that, he would refuse to use public toilets for years. At school, he would wait until he came home or soil himself.

    Then we were able to persuade him to come with us into a disabled toilet, but we weren't permitted to touch the hand dryer. If possible, he wanted us to switch it off at the wall.

    These days - no problem. But it took time, patience, acceptance (by us) and accommodation. He needed us to respect his fear, at least enough to not force the issue.

    We had similar fears with difficult child 1 - animals, and water. He went years without having his hair washed. And bowel training was a shocker - it was as if he decided that excretion was now a thing of the past, he need never have to do it again if he had enough willpower.
    And I do think that comes into it at least a bit - I shared a few weeks ago, how when difficult child 3 was about four or five (not sure exactly) I hard him head into the toilet first thing in the morning to empty his bladder, and he exclaimed loudly, "every morning, there's wee!" as if he expected he should have grown out of it by now.

    easy child 2/difficult child 2 as a baby had trouble going to sleep - it was as if she had decided she never needed to sleep, ever again. She sat in her cot, swaying with exhaustion, eyes closing, still screaming in anger at being put to bed... then she would fall over, hit the pillow and wake up again and start screaming all over again. Every time, day after day.

    They are all different. Even in the same family - each Pervasive Developmental Disorder (PDD) kid is different. Different personalities, different problems, different talents. The one thing I've noticed is they all did better when I kept them occupied.

    Task-changing is a big point of conflict - there are ways to make it a lot easier. Read "The Explosive Child" for some really good ideas.

    ANd the other really important thing - keep a diary. All the stuff you've written, needs to be kept on file for you to refer to and maybe show any doctors and therapists. I also made a Communication Book to travel in difficult child 3's schoolbag, and I would type my entries on the computer, print them out and stick them in. His teachers could then read them for a heads up or anything else. "He slept badly last night, he could be tired in class today. He's coming down with a cold and his behaviour always gets worse when he's getting sick."
    The teacher could then write anything she felt I needed to know. "He worked well this morning but had trouble settling after lunch."

    I found it also helped us get a better understanding of any link such as illness, certain events, food etc. We identified a couple of allergies we didn't know about, by seeing the clues in the Communication Book entries. And I would take the book with me to show the pediatrician. Educators would look at the book when we were doing the IEP.
    And it saved me from having to try to remember it all.

    You mentioned your husband looking at the posts - that is really good. husband & I do this, it has helped our communication even more. We thought we were good communicators before this - now we're even better!

  12. Matty's Mummy

    Matty's Mummy Member

    Just thought I would update where we are at, as well as let you know what is new and asking for your opinions thanks

    We still haven’t seen the Pead the appointment is end of July
    Our boy now has a bald patch of hair, at the front of his head were he has been pulling and rubbing it.

    I’m not sure if this is related or something different, any idea’s? A few members on another forum I’m on not a forum like this though where parents have know about these things…have said that hair pulling is a pretty “normal” thing that some kids go through, I’m really hope it is just a separate thing but my gut is saying this is apart of all the other stuff, any thoughts from anyone here will be very much appreciated.

    The urinating has settled a bit, he has stopped the whistling while going to the toilet, still flicking his fingers and some blowing and even hyperventilating now.

    He is quite anxious and has started to do these little yells/ squeals, I’m thinking vocal tic’s for these and he also is panicked about the dark also for no reason at all he will scream run and hide under anything he can.
    At the doctors last week, (not the nasty Dr.) when his name was called he hid between two lounge chairs and wouldn’t come out, he was crying and hyperventilating. The Doctor was great took the little one for me, while I dragged the 4year old out.
    I’m going to have a look back through some of the links that PP have posted for me. See what I can find. I cant wait much longer for this Pead appointment.
  13. SRL

    SRL Active Member

    Pulling out hair can also be tic-related. My nephew has made bald patches when he is going through especially anxious times.

    If you're seeing anxiety about the dark or whatever, listen to his fears and relax on issues that you can. I know that you have to take him to a doctor's appointment even if he's anxious, but you can leave a little light on in a room all night and even the big light while he falls asleep.

    Poor little guy. Poor mom--having an anxious one is tough. I've been there, done that.
  14. Matty's Mummy

    Matty's Mummy Member

    Thanks for your speedy reply it’s great to know someone is always here :D
    I was able to talk to Mental health here just over the phone, they aren’t willing to see our boy until we have seen the Pead, he lady did say she had talked to her colleges about everything I had mentioned to her, (she has been seeing my easy child for anxiety…and she is doing fine now ) anyway they feel his diagnoses will be Pervasive developmental disorder Pervasive Developmental Disorder (PDD). I’m a bit confuses as to what this means. Is it just an umbrella name for, a type of Autism? Also can anyone explain to me the difference between Pervasive Developmental Disorder (PDD) and Pervasive Developmental Disorder - Not Otherwise Specified ? I’m just not fully understanding the difference of the two. And not sure if I should even bothering thinking on this giving it so much thought before we see the Pead.
    PS woudl Tic's also fall under Pervasive Developmental Disorder (PDD)?
  15. SRL

    SRL Active Member

    Pervasive Developmental Disorder (PDD) is an umbrella term for Autism as well as several other disorders. Most of the time in the US Pervasive Developmental Disorder (PDD)-not otherwise specified is referring to Autism that doesn't fit exactly into one of the categories (ie not Asperger's, not High Functioning Autism, etc). Tics are fairly common in kids with any of the Pervasive Developmental Disorder (PDD)'s, including Autism.

    I would take any suggestion of a diagnosis given over the phone with a grain of salt. Ditto the internet. There are many overlapping traits in kids who wind up with diagnosis's of Tourette's, Autism, and Pervasive Developmental Disorder (PDD) so you want to have him seen by a specialist who can help differentiate.

    If you're doing internet research, Autism and Pervasive Developmental Disorder (PDD)-not otherwise specified are pretty interchangeable.
  16. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Even if he has a urinary tract infection, he has classic signs of both Tourettes and autistic spectrum disorder (high functioning). My son has Pervasive Developmental Disorder (PDD)-not otherwise specified. It's a higher functioning form of autistic spectrum disorder. Be careful--it's hard to GET the diagnosis!
    The hand flicking is a classic stimulant and so is Obsessive Compulsive Disorder (OCD). I would take him to both a regular Neurologist to check him for Tourettes and a neuropsychologist to see if he is on the spectrum. His sensitivities also point to Autism Spectrum Disorders (ASD)--sensory issues. He should be getting interventions for his symptoms, regardless of his diagnosis, and usually that comes from school. NeuroPsychs can be found at children's and university hospitals and are well worth the usual waiting list as they do more intensive evaluations, on every level, than any other professional. good luck.
  17. johnflintoff

    johnflintoff New Member

    my son is 9. he was diagnosis at 7.5 with Obsessive Compulsive Disorder (OCD), but we think he may have aspergers as well. he had a thing with odd numbers. he couldn't handle anything being odd, not the volume on the tv, to the nu,ber of strawberries on his plate. he counted footsteps all the time, and had an overwhelming urge to make the same movements with both sides of his body. think brushing your teeth. he would make the back and forth movement with the hand NOT holding the toothbrush as well. he also had some germ issues/fears. he is in therapy,I have searched the net for his treatment and buy books on Obsessive Compulsive Disorder (OCD) to get him cured as early as possible and he has conquered a lot of the above mentioned stuff.

    Good Luck
  18. Matty's Mummy

    Matty's Mummy Member

    Back from the Pead..
    She said that it sounds to her like Obsessive Compulsive Disorder (OCD) as well as Autism Spectrum Disorders (ASD), she said it’s very rare to see Obsessive Compulsive Disorder (OCD) in a child so young but it happens obviously..
    He doesn’t have enough to meet the criteria of Autism Spectrum Disorders (ASD), to have a clear diagnosis at the moment, but that could change once he enters the Prep year. She said once they start in school the crakes often start showing..
    We have another appointment for next year term 2, as this will give the teachers time to notices how his schooling is being effected… Also to see how things are in social situations, at the moment there are no alarms ringing for any of the social stuff.
    Also there isn’t’ much point of us seeing anyone from Mental health, as kids this young 4.5years old don’t really respond to Cognitive therapy.
    The only thing she said si that he may need medication if things deteriorate again. I don’t want to use medication if I can help it,. But of cause if he was still as badly stressed as he was or if the level of distress ends up where it was I will run to her for help, for the moment though we are coping.
    M is still doing a lot of the same stuff but isn’t distressed like he was, it just what he does now, IYKWIM?
    Also she did mention that Pervasive Development Disorder - Not Otherwise Specified as a possible diagnosis.
    So I think that is all, now we wait to see how he copes with school.
    I did explain I would rather have this sorted before school.. But she said she really needs more information….and that having a diagnosis at this time isn’t’ really going to help, and we are better off waiting and having a correct diagnosis, something like that anyway, it made some sense when she was explaining it all.

  19. SRL

    SRL Active Member

    I'm glad that you found a doctor who listened and who sounds like she's at least in the right neighborhood.

    I agree that I'd prefer having it sorted out before school started. Does the school he will attend have any kind of support services should those become necessary? It's common for kids in the neighborhood of Pervasive Developmental Disorder (PDD) to need speech therapy (at least social language or pragmatics).

    Did you discuss the possibility of Tourette's at all?
  20. Matty's Mummy

    Matty's Mummy Member

    There is no Special Education unit at this school we are very isolated here, I know children with Down syndrome have been very well supported though. So I’m thinking we shouldn’t’ have much of a problem.
    No not really I had forgotten to ask about Tourette’s, but we did talk about the noises. She said the noises are common in children with Autism Spectrum Disorders (ASD) and then I started to talk about my eldest son that had vocal tic’s after a operation, and then I never thought to go back to it. These appointments are hard, I forgot a few things and then I thought I sounded pushy for a diagnosis of anything.
    She did phone me at home with numbers, so I could ring to find an Occupational therapist for his low muscle tone. And when she did i asked about Aspergers and if he fitted for that. I started to wonder if Aspergers was when a child didn’t fit into any particular group, I was so confused there for a bit.
    Now my anxiety is playing havoc with me, thinking she’ll think I’m just pushing for a diagnosis.
    She was good though and just explained it all again, how he didn’t really have enough of any one group but enough of different things to warrant some type of diagnosis.
    She never suggested a Neuropsychic or Neurologist
    , and of cause I forgot to ask.