Help why do they think I’m the cause?

Discussion in 'General Parenting' started by Matty's Mummy, Jan 28, 2009.

  1. Matty's Mummy

    Matty's Mummy Member

    Ok so here is the thing, we finally got an appointment with Mental health, you know I was hoping to get some sort of help from them.
    Before this we have been seeing a wonderful Pead Occupational Therapist (OT), who feels that most of our boys problems are from sensory stuff…. So we’ve been working on that.
    So off to mental health, to find out more about some of the Obsessive Compulsive Disorder (OCD) type stuff. I figured while I’m there (this was a big huge mistake) why not try getting some help for my own Obsessive Compulsive Disorder (OCD). Yeah so from there I turn up today and here, well I’ve asked x to come (x is my sons phycologist) to your appointment, because we’ve talked about it and feel, that 4 years old is to young for Obsessive Compulsive Disorder (OCD), and we feels he has learnt the behaviour.
    What the heck! So I totally freaked out, I’m sitting there thinking “og my god how the heck am I going to get this child help?” my brain was racing, all I could think was this is a friggen waste of time, they are totally on the wrong track and while they stuff around longer, my son misses out on the help he needs.
    His Obsessive Compulsive Disorder (OCD) stuff started after he, broke his arm on the trampoline (far out, now what if they decide we did it) is it even worth getting help?
    When I first came on this forum, I posted our names kids photos’, then learnt from some of you, that therapists or who ever the people that protect kids, have used stuff on this forum to use against people
    And I honestly thought, “yeah well that isn’t going to happen to me, cause I’ve done nothing, ther eis no-way they could turn this to be about me, my parenting.” well what a joke that turned out to be,.
    So please help, what do I do now?
    I feel like calling them and cancelling everything, and saying that forum I filled out so you could send information about us/ my son to his doctors STOP, I take back my signature…”
    I told them anyway that they were way off track, then she changed it all around to make out the Learned behaviour was something different. So I ended up talking to them, then when I got out of there I thought no hang on, she did say, first up his learned behaviour was from me having Obsessive Compulsive Disorder (OCD).
    So now what do I do? This is just crazy!
    Oh and I cant get onto his Pead Occupational Therapist (OT) as she has moved and her phone isn’t working, when I called her, we had just enough time before her phone dropped out for to say she will call later on.
     
  2. SRL

    SRL Active Member

    Those dimwits. It's genetic, not learned. Anxiety disorders tend to run strong in families:
    http://www.eurekalert.org/pub_releases/2006-07/uomh-ngf072606.php

    I'm sorry you were treated so unprofessionally. I don't know what your system is like but I'm guessing you probably don't have a lot of choices on who to see?

    Can psychologists share medical information freely without your permission? Aren't there any laws protecting patient privacy? This would have been a MAJOR violation of patient privacy here in the US.
     
    Last edited: Jan 29, 2009
  3. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    That's sickening. Yes, I would dump them. They are clueless and won't help your child.
    Frankly, I'd take him for a MDE or neuropsychologist to have him evaluated. The Occupational Therapist (OT) isn't really capable of evaluating him or why he does what he does. Sensory stuff usually goes along with specific disorders. Sadly, mental health clinics (if you mean the county ones) are often manned by not--too-good professionals. in my opinion the best place to go is University Hospitals. They usually take Medicaid too, in case you have it. I wish you luck. Sorry they put you through that garbage.
     
  4. Matty's Mummy

    Matty's Mummy Member

    Thanks for the link and post,. I signed something that gave them permission to pass information from Doctor to doctor therapist school,….. So I rang then after I posted and said ‘I take back my signature because I want my son to receive the right treatment for him and he will not get it if used send out information about me and saying Matthew’s behaviour is “learned” again she tried to deny it what does she think I’m so stupid I cant remember what she said? So I repeated word for word, then she said ‘Ok forget what I said…” and tried to change it again to “ we just think it best to have family therapy so we aren’t’ confusing you”
    Oh yeah load of rubbish.
    No we don’t have a lot of choices but she wants me to trust her, hmm that is a bit hard now.
    I have told her everything about myself and now I just dont know, it’s not like I can tell her more and do more damage to myself, she has everything. But I know we aren’t going to get the right help, it’s funny because I had a yuck feeling about her straight up,. My daughter was seeing anther therapist from the same group she was great I never had the feeling from her.
    And the one my son is seeing seems wonderful to.
    Now if I dont take Matt back, I’m going to worry they will do something. Ugh this is hard. I’ll take him play the game while I find someone else. We are 3hours drive to the city we are really isolated so it’s hard.
    My own psychiatrist is in Brisbane a 15 hour drive away, we moved 5years ago, if I needed to I could call on him. Also my eldest seen a phycologist for years and I think I’m going to dig out her number just in case. She is 15 hours away to.
    This is so irritating cause it’s wasting my time and energy. I just get the feeling that she like to stand over people to… I don’t know tis’ odd I’ve never had this from therapist before or psychiatrists.
    My husband is really annoyed at me he feels like I have put Matt at risk now. I just want help for him.
    I think now after this we do better on our own. Gee it’s really not safe to reach out for help is it?
     
  5. SRL

    SRL Active Member

    I believe that she is in the UK and the whole system is different, and in some cases the specialty names are too.
     
  6. Matty's Mummy

    Matty's Mummy Member

    Oh no I'm in Australia in the middle of no-where. :(
    I don&'t even know where to start to find help, I thought mental health was it.
    Nope, it's so frustrating, this is feeling like a bad dream. She is so thick it';s scary.
    I was telling her (I only seen her once) about a bad dream I had (a dream) of evil demons and I was really scared when I woke up she said to me, you need to be careful because you could start seeing your children as these things & what the hell for two days I was freaking out thinking what is I do see my children's faces and they change, like in my dream, but in my dream it wasn't my children.
    What the heck doesn't she know you shouldn't suggest things to people with Obsessive Compulsive Disorder (OCD) and anxiety?
    The dream was like 10 years ago when I was having problems with my in-laws and my sister in law was a evil thing in my dream. Anyway once I got over it I couldn't help think this therapist is really thick, isn't that something she should know not to do, (Suggestion)?
    God help me,
     
    Last edited: Jan 29, 2009
  7. SRL

    SRL Active Member

    I'm going to flag down one of our members from Australia who is used to dealing with the system there to see if she can help.
     
  8. tiredmommy

    tiredmommy Site Moderator

    That's an excellent idea, SRL.

    {{{Hugs}}} to your aching heart, Matty's Mummy. I understand how painful this is. My daughter used to line up toys, spin in circles, etc so I took her to a neurologist at the pediatrician's suggestion. The man had the nerve to tell me I just wasn't busy enough and there was nothing wrong with Duckie. It hurts to be blamed.

    Our family doctor asked me once if I wanted parenting classes to help with Duckie (it wasn't asked in an accusing manner) and I said "yes!" because if changing me would make the situation better, then so be it. He went over my parenting style and did a few risk assessments and decided it would be a waste of time and declared me a "good" parent.

    Personally, I wouldn't be against family therapy if I felt it would help and my child was being thoroughly evaluated at the same time to find and treat any underlying issues. But it doesn't sound like stand alone family therapy will address the underlying issues your son faces.
     
  9. SRL

    SRL Active Member

    I just went back and read your into post in which we were suggesting you look into sensory disorder, tics, and Pervasive Developmental Disorder (PDD). Was this your first appointment with him and they jumped all over you about the Obsessive Compulsive Disorder (OCD) behaviors without addressing anything else?
     
  10. dreamer

    dreamer New Member

    I'm sorry a prof is blaming you but.....ive been in similar shoes. my son could not do a lot of things he should have per dev charts. he was 2 mos preemie & his dad had massive agent orange exposure. but docs kept saying I was just not a good mom & that's all that was wrong. then the in home docs put in their 2 cents....they were in place due to my oldest childs bipolar. they decided my son was bipolar simply bc my oldest child was. they decided he needed medications & then he would 'choose' to walk etc. I went on my own & got him in for mri but it took me till he was 8 yrs old......they found cerebal palsy & seizures. yeesh. yes I knew but.....docs just kept dismissing our concerns & kept blaming us.
     
  11. Marguerite

    Marguerite Active Member

    Hi Matty's Mummy, I was wondering how you were getting on.

    First things first - breathe. Take a big deep breath. It will be OK - although we can't make all the hassles go away, your life is already stressful without piling more stress on top of it.

    The way through from here is to stay calm and to reason it all out. You can do this - after all, look at what you have managed to do in your life, look at all you manage to live with and juggle. You are stronger than you think.

    Now, let's look at your situation. You clearly have a family with strong trends running through everything. To paraphrase Cary Grant from "Arsenic & Old Lace", Asperger's, Obsessive Compulsive Disorder (OCD) & anxiety dont just run in your family, they gallop.

    Now, to look at your life in general - your life is stress piled on stress. This means you are likely to have any underlying anxiety problems increased. The same goes for your family. You therefore all need to find some way of coping. If your way of coping is to increase your rituals, then that would mean your Obsessive Compulsive Disorder (OCD) would be more apparent. I'm not saying it's right or wrong, it just IS.

    Is is possible your 4 yr old has learned this behaviour from you? Let's consider this. Think about it - how obvious has been your own Obsessive Compulsive Disorder (OCD) tendencies? What do you do, that is Obsessive Compulsive Disorder (OCD)? Now, think about it - what does HE do that is Obsessive Compulsive Disorder (OCD)? Under what circumstances? You say he started after he broke his arm on the trampoline (a common cause of broken bones in kids). A very young child (and I count 4 as very young, in this) is likely to have anxiety issues increase after an injury. Again, Obsessive Compulsive Disorder (OCD) is one way of coping. You may have noticed in your Aspie child, the occurrence of stims, or certain repetitive behaviours that seem to calm him down. It's pretty much the same sort of thing, him finding ways to help him feel safer. There is also the possibility that your 4 yr old is another Aspie, in which case what you are observing could be Obsessive Compulsive Disorder (OCD) or it could be some form of stimulant. And in that case, I doubt there would be very much learned component. If any.

    I can really 'hear' your anxiety in your post. I don't blame you feelnig anxious and upset by this, but looking at it from the outside plus remembering my own experience, I'm fairly sure you're going to all be fine. I think this is unfortuntely a process you are going to have to go through. I was feeling anxious when it happened to be, but even more, I was ANGRY. I felt they were wasting my time and wasting the precious time available to my child, who each day was getting more set in his patterns and losing more time in which he should have been getting help. And while they fussed about me and my health problems (and tried to blame me) I felt they were squandering my son's chances of getting early intervention.

    I'm sorry to have to say this - but especially considering how isolated you are, I think you have to endure this, to a certain extent. You just don't have the luxury of finding someone else. You have to educate the ones you do have, hopefully the paediatrician, when she calls you back, will help correct the misinformation for you.

    Now, as to who you've had these problems with - is it a Community Health Service (or Area Health Service)? I'm not sure what they're called in your state, but they are commonwealth based, I think. I could ask my Occupational Therapist (OT) daughter, she's pretty good with the ins and outs of the health care system. She's based in Newcastle (a bit far south of you!).

    We had our problems with the Community Health Service, but we stuck it out and in the end, it all turned around. We had to endure the process and show willing, in order for doors to finally open. And yes, there was a lot of nasty misinformation and assumptions being made to begin with, including the statement tat difficult child 3 was not talking already, because he was emotionally neglected (which was bunkum). Then we got the statement, "He's not talking because you don't talk to him, so he's not exposed to language."
    I repied with, "That's crazy, we're a very verbal family, we talk to him all the time, not just me but the other kids and his father, we all talk to him."
    They then said, "Oh, well then he's probably not able to get a word in edgewise."

    In other words, at least initially, they have ALL the answers and will turn it around to always have an explanation that blames the family. That seems to be the first line of enquiry.

    However, it is a FIRST line of enquiry. When the evidence quickly mounts up that it is far more than simply learned behaviour, I'm sure they will rapidly move to something more appropriate. I mean - how can they continue to hold that view, when it is so easy to assess and evaluate?

    It is their job to try to find out what is going on. And because they are a clinic (I suspect) they will try for the easiest answer first. And for them, the easiest answer is "blame someone else". because if they can prove that this is simply learned behaviour, then it's easy to unlearn it, and in treating you they're treating the child(ren). That's effort for one, with multiple benefits for the family. An easy, inexpensive answer.

    Here's hoping that your paediatrician comes through with some records for them to make it clear that they have got the wrong end of the stick. YOu have done a good thing in having a history with past practitioers tat you are happy to have out in the open now. That proves that you are not a Munchhausen's by proxy parent (and there is increasing debate thatMunchhausen's by proxy doesn't even exist, anyway). The people most likely to attract a Munchhausen's by proxy label, are the ones that always run and hide when someone makes an accusation of "you did this to your child". Even if such an accusation has not been made - yet - but just hinted at - eventually, if you keep running and hiding, you will run out of people tosee and word will have got around. And then they WILL investigate the label, often to the extent of ignoring any genuine health problems becuase the repeated running and hiding seems to vindicate their initial idea. Therefore - especially in an isolated area, unless you know you will get a clearer hearing elsewhere, you may need to stand your ground and face them down.

    You've begun thinking more clearly in your later posts on this thread - your mind is a whilr trying to find ways of sorting this out. That's really good - keep it up. You were thinking of contacting your psychologist form Brisbane - do it. Any evidence you can come up with, any advocate you can find who is prepared to say, "I have known these people for some time, the mother's Obsessive Compulsive Disorder (OCD) is mild and of long standing, was not readily apparent for some years, the youngest didn't start showing Obsessive Compulsive Disorder (OCD) until sudden trauma in the form of a broken arm sustained in play on a trampoline."
    The psychologist may have something to say about your dream - but frankly it seems inappropriate for her to make such a suggestion to you under the circumstances (that you had to be careful you didn't start seeing your childrens' faces that way). I mean, really! A dream is not under your control, you clearly could distinguish between dream and reality, the symbolism in your dream is very much a matter of semantics - different meanings for different people - and on the first meeting, to analyse your dream so precisely, is a worry. You know what you feel about your sister in law and why. I doubt you would have been able to accurately convey this in a single session. If you were seeing all the people in your dream looking like monsters, including your children in your dream, and you then reported seeing monsters faces on people you were looking at while awake - then MAYBE she could have said it.

    If you have no alternative route to take, I'm afraid you might have to keep seeing these people. "Show willing" and prove that you are prepared to stand and fight, rather than run and hide. And with these people, you stand and fight with evidence. Write your own analysis onto a sheet of paper, if you feel it will help. Do what I have done here - face the 'accusation' and go for it directly. Analyse it. Challenge it. Then if you have produced the evidence, dismiss it. If you feel you can justify dismissing this crackpot idea, then they should give your analysis consideration and hopefully it will speed up the process for them to also dismiss it and move on.

    From the sound of your phone call to this person, I suspect she's already regretting what she said to you (about your son's Obsessive Compulsive Disorder (OCD) being learned behaviour). It may have just been a throwaway line? But from our point of view as mothers, we hear a comment like this, especially from a new person we're anxious to make a useful impression on, and we magnify it in our own minds to terrifying proportions.

    So I do recommend you stick it out with this mob. However, you're the person on the spot, you have to make the call. You can't communicate a "vibe" to us effectively, perhaps if I'd been at your elbow during the appointment I'd now be screaming at you, "Walk away!"

    What alternatives do you have? If you're isolated, there's not a lot of choice. You either find someone in the city to trek to regularly (and petrol ain't cheap) or you hunt around in your area to find a series of various health professionals you can consult with as part of a Health Care Plan. I'm not sure, ask the GP, but I think the various health professionals on the same patient's Health Care Plan are automatically permitted to talk to one another? They ARE authorised to feed back to the GP.

    If you haven't already got this, and if there are enough services in your area (there should be in Mackay) you should be able to get the same sort of services through a Health Care Plan. You go to the GP who you feel comfortable with and ask for a Health Care Plan (for yourself, or for any of your children). You usually need to book a double appointment for this. The GP lists all your medications, all your health issues, then between you decisions are made as to what sort of specialists/ancillary services you want to try. You can see a psychologist, a physiotherapist, a dietician, an Occupational Therapist, a Speech Pathologist - a number of these, all under Medicare. It's not unlimited, I think you get 8 sessions? But it can be extended by the GP. And not all psychologists etc are registered for this, you need to check with the ones you wnat to see, if they are or not. You can't readily change (I don't think - ask the GP) so my suggestion is to try out the psychologist of your choice first to make sure you're comfortable with them. At least, that's what we did.
    The success of a Health care Plan depends very much on the range of quality of health professionals you can get access to.

    Now, to neuropsychologist assessments - they ARE available in Australia, I've finally discovered. OK, difficult child 3 is 15 and I've only just found this out, so they're not widely known about. But difficult child 3's new psychiatrist has requested a neuropsychologist assessment through his clinic, so they do exist. But considering how difficult it has been for me to find out about them, I suspect you might need to go to Brisbane for it. Hhowever, ask the GP. Again, it could be included in a Health Care Plan which would be fabulous.

    The GP also gets extra money from Medicare for doing a Health care Plan for you. Once a Health Care Plan has been done, you can't go get another one from a different doctor for about 18 months (not sure of the exact time-frame). So don't just go to any GP, find one you're happy with. Of course, this doesn't mean you can't take your kid to another GP for something, it only refers to the Health Care Plan consults. The GP who writes up the Health Care Plan gets to be the spider in the middle of your health care web, getting copies of all letters sent to him/her, and also writing all the referrals.

    With what you signed giving permission for people to talk to one another - if you really want to cancel this, you need to do it in writing and to include, in your letter, a request that your letter refusing permission be forwarded to everyone to whom the orignal signed permission was circulated. However, if this is aclini situation, two likely outcomes could eventuate:

    1) The clinic may refuse to see your child/you any more, as it makes it impossible for a multidisciplinary team to coordinate their efforts; and

    2) Especially in a small town, it may not stop them comparing notes. It should stop them, but a lot of rules get broken in a small town. It could even increase their talking to one another informally.

    So before you actually send such a letter, ask them (over the phone) what will happen if you do, and how you deal with the copies of your signed permission that have already been broadcast.

    Besides the experience I described earlier, of difficult child 3's language delay being squarely blamed back on me and my "neglect", there was an earlier interaction (at a different Family Health Clinic) concerning the pediaitrician there who was treating difficult child 1. With hindsight, I should have made formal complaint about the ratbag. But he used my health issues as an excuse to attack me through difficult child 1, blaming difficult child 1's "depression" on my "primarily depressive illness". In fact, he was trying to play psychiatrist with me, even in the face of my having seen a psychiatrist (who at the time was actually his boss, head of the clinic) who gave me a clean bill of mental health.
    That time, I ended up walking away - you can't keep taking your child to see someone who you have just called an inappropriate practitioner with an unhealthy interest in the mother of his patient, to the detriment of that patient. And I called him that in writing, and the idiot was showing my letter all around the clinic. Definitely time for difficult child 1 to find a new pediatrician!

    But the clinic with difficult child 3 - we stuck it out, even when they made us do family therapy. At the time I was an emotional mess, suffering from PTSD as well as some serious physical health issues. husband was falling apart from the stress (and undiagnosed physical issues) and they were having fun finding things wrong with us, the parents, which could take the blame for your child who was "odd". But as we talked and they did the therapy thing, they very quickly recognised that this was a door they could close. Subject checked out, investigated - and dropped. I think we had two sessions of family therapy, before they said, "We can stop wasting everybody's time, and get your son assessed. He is the main concern here."

    Matty's Mummy, it's your call. But social services are stretched too thin for them to make any moves on your child. You love him, you're trying to get him help - no judge in his right mind would support an intervention, and I think you're a vast distance away from THAT likelihood! You've just got too much legitimate history, showing you've been doing what you can and more.

    So relax. You'll be OK. But just to make sure, follow through on contacting old therapists and doctors so you can quickly debunk this false trail.

    Hang in there.

    Marg
     
  12. Matty's Mummy

    Matty's Mummy Member

    Thank you, I asked an online friend here in Australia for help to, so hopefully we end up with someone that has a clue, I just cant be stuffed around, get sucked down by their lack of understanding, and lose precious time while I try and convince them that I’m not to blame.

    I just wish we were at home (Brisbane) back there the school/ teachers have known me for years and know what we have been through with our eldest, seen the lengths we went to, to help him…

    Our Doctor knows our/ my history and knows how I have parented in spite of everything I have endured, our eldest sons phycologist knows us knows how hard we work at helping our kids, she knows my history..
    My own psychiatrist is back there, he’s treated my uncle, sister in-laws x2.…
    Would never dream of suggesting that my own mental illness is the problem…

    I’m feeling really overwhelmed, you know even our Pead when I took my son with own syndrome, sent me off to Food clinic. Now I thought “great I should be able to get heaps of idea’s from this to help”

    When I turned up, we had a teen of Speech therapist, Occupational therapist, deitition, social worker plus someone else.
    After looking at the different foods and textures I brought with me, and talking to me for less than 10mins.

    The social worker looked at the others with a “look” and then said to me, “I don’t understand why you were sent to us, usually we only see parents that need nutrition advice” then the Speech therapist said “you have had a child with a Cleft lip and palate, you know all about texture and how texture effects swallowing and gagging, you could probably tell us more than we could tell you”

    Then they looked at each other in a look, and I just knew the Pead had sent us cause she thought I was bl**dy hopeless. I was so embarrassed not as much as they were though, they couldn’t’ offer me anything.
    Now I’m just feeling like I’m getting this everywhere I go. What he hell is wrong with people to put me in a box like that.
    This woman yesterday also asked me what religious stuff I have taught my kids. Well nothing. I think that came about because I stupidly told her that I had some religious Obsessive Compulsive Disorder (OCD) stuff (again from what I have read online and my own psychiatrist) it is really common to have Obsessive Compulsive Disorder (OCD) religious thoughts.

    And OMG even my sons teacher, yesterday, she sat with us while he read a book, then same book she had read ONCE the day before ( we dot have this book at home) then after she listened to him read a few pages, she got up as she did she said “oh he has such a great memory to remember all that”
    Far out, he’s been reading since 4years old he is now 5, I have had this talk with her before and she said that children at this age, read from memory. Um no he can read, even the teacher aide said to me he is reading he reminds her of the guy in Rain man movie. Only Matthew doesn’t’ have Autism like that.

    So I’m just really feeling it now from all angles.
    Just spoke to my mum and she said “I told you know to get help!!!!!!!” ok so she yelled at me. And she also said “not to cancel with them until I have another appointment with someone else”
    I was think they same they might think, they need to act? Who knows.
    This is ****, I always tell people on other forums don’t be afraid to reach out for help with your Obsessive Compulsive Disorder (OCD), these thoughts are just thoughts, people with Obsessive Compulsive Disorder (OCD) come up with the most terrifying imaginations thoughts… and that is all they are, it will never be acted on, your kids are not at risk..” I know this because my psychiatrist assured me….now I’m think **** it up deal with it at home cause the “Risk” is just not worth it.
    Thank God I have this forum

    OMG Dreamer that is terrible, thank you though I wish I was more careful, I just feel like trying to get help for myself put my son at risk. I‘m healthy now I dotn suffer to much with Obsessive Compulsive Disorder (OCD) but I wanted to be free of some compulsions.. . I’m 36 and it just felt like time…

    Tiredmummy I agree if that was what it was about I’d be all for it.
     
  13. tiredmommy

    tiredmommy Site Moderator


    It's quite possible he has high functioning autism. Have you tried this childbrain assessment? It's not really a diagnostic tool but will give you an idea if he should be evaluated for autism.

    http://www.childbrain.com/pddassess.html
     
  14. Matty's Mummy

    Matty's Mummy Member

    I got Mild Pervasive Developmental Disorder (PDD) 64
    the Pead said Obsessive Compulsive Disorder (OCD)/ Pervasive Developmental Disorder (PDD)-not otherwise specified she said he has all the quirks of Autism but none of the social stuff, but once he starts school we would know more about the social part.
    Second day of school he hid under a table because a boy it him. at home if he si overwhelmed having a melt down.. he hopes into the pram and covers himself, he likes that deep pressure sensation. the Occupational Therapist (OT) said that is common in "these" kids

    Marguerite
    I only just seen yoru post will go back and read now
    thanks[
     
  15. SRL

    SRL Active Member

    If he was a precocious reader, you'll want to look into Hyperlexia. It often goes along with Pervasive Developmental Disorder (PDD).
     
  16. Marguerite

    Marguerite Active Member

    I agree about the hyperlexia, SRL. I think MWM was also thinking along the same lines. It would fit with the paediatrician suggesting Pervasive Developmental Disorder (PDD)-not otherwise specified (also compatible with hyperlexia).

    Matty's Mummy, hang in there. It is VERY frustrating, but you do have to be patient with the idiots you will encounter. The teacher who said, "my my, what a wonderful memory" - tell her that if she wants to test her theory, then she has to be prepared for you to challenge it. To prove the teacher correct (as a good, scientifically-minded teacher should accept) then she should go to the shelves and select a book he hasn't seen before, then ask him to read it. That way there is no way she can declare he's doing it from memory.

    We went through the same thing with difficult child 3 - he was reading fluently at 3 but was non-verbal. Bizarre. To be more correct, the week after he turned 2, we have him on video typing the lower case alphabet into the computer. The computer would prompt with the lower case letter on the screen and difficult child 3 would match it with the upper case letter on the keyboard. He then quickly went to whole words, especially words he had used to him. To teach him a word we wrote it down doe him with a picture of what the word was. We then would read it to him and either act out the meaning of the word or in some other way show him what it meant. From that point on, it became a word in his covabulary. But by about 3, he was reading phonemes. In other words, he understood sounds and the look of them and could put them together into words. But he often mispronounced where it was a phoneme that broke the rules (ie bough, cough, through).

    We had had to deal with a lot of idiots. Sometimes it comes form someone you really thought was supportive - I remember difficult child 3's Year 1 teacher at the end of her tether, almost screaming at me, "Your son has ODD - I'm convinced of it! I could strangle him sometimes!"
    I was very upset with her, although overall she has been one of his best teachers and I could still go to her and discuss him and how he's going, and know I'd get a good hearing.

    Do you use a Communication Book with the teacher? It can help. But you need to be generous with the teacher, you will never guarantee a meeting of minds where your son is concerned.

    I guess what I'm trying to say - for your own peace of mind, lower your standards for other people. You can still keep your aims for other people just as high, but give them some slack.

    example - you are an ambitious parent with a gifted child in high school. You want your child to do really well. Your AIM is for your child to get the top marks in the state in Year 12, but you will SETTLE for Dux of the school.

    The scenario you described about the multi-disciplinary team and their litle glances to each other, and the way they wondered why you had been sent to them - your evaluation could have been correct, that you had been sent there because the doctor thought you didn't have a clue (when in fact you probably know more than they do). However, your response to the situation probably didn't help you make progress. That sort of thing happens. It happens far too much and is annoying. In your case, it's probably more than annoying, because of the distances tyou have to travel. But it WILL keep happening, if you don't complete the circle. And you do need to complete it, in order to put a stop to this sort of nonsense.

    To complete the circle - you go back to the referring doctor, you look him in the eye and say, "OK, now tell me what YOU expected to achieve with that referral."
    Talk it out. Explain that they basically sent you away because they had nothing more they could teach you, you've already learnt more than they have. Ask him what the next step could be.

    There can be several reasons for the doctor to do what he did; the most likely reason is, he is so desperate to help, that he was clutching at straws. Doctors become doctors because they want to help. They really get upset when they have patients they can't fix easily. Some doctors really dig in and try to help; others take the easy way out, blame someone else and refer you permanently out the door.

    You can have two responses to this.
    1) Call him an idiot and walk away, because you feel like you are wasting your time.

    Or

    2) Stick around and re-educate him. Calling him an idiot is still optional.

    Where possible, I take option (2). It has proven to be incredibly valuable. The reason - if you stick around, the doctor has to accept you aren't going to go away easily so he may as well actively try to do something. Also, as the doctor explors (and eventually rejects) all the silly ideas, what is eventually left is the more likely things.

    You need to make it clear - you are a vital link in y our child's health care. You require the involvement of the doctor because, as someone who has studied at university, he has access to some expert knowledge and book learning that you require. You need his services, as youwould hire a plumber to put in a new tap or an electrician to instal a ceiling fan. You know what needs to be done in broad; you are hiring the services of someone to do the spade work.

    A medical expert is someone you need to help your child in areas beyond your capaibilty. However, as you go down this road you yourself are learning a great deal, to the point where you are becoming an expert of equal capability. You need a doctor who will listen to you, discuss possible ideas with you and will believe in you.

    This takes time. You have to work hard to develop this relationship. A good doctor is one who is also working with you from his side, to develop and maintain a good, effective working relationship to the eventual benefit of your child. Along the way you will each do and say idiotic things. You want the doctor to be generous and forgiving about this; you need to do the same. Again, you may never have a full meeting of minds. That would be the ultimate aim, but you need to lower the standards here. All you really need is someone who will help your child and take your concerns seriously. You probably each vote for different parties; that won't matter. And you can sometimes find help in unexpected places.

    Another 'rule' of mine - the more specialised the specialist, the lower you have to have your standards of human decency and kindness, because the more specialised a doctor, the rarer they are and the less nice they need to be. If you ever get to see the top specialists in the field, be prepared for them to be really nasty. But extremely competent.

    But it is possible to be lucky, even with the top person. I've met a couple of extremely senior,extremely specialised doctors and they have been wonderful people, so even my rule can be broken.

    Keep the focus on your child and what they can do for him. Try to not take on board any apparent negative thoughts you think they are having about you - what do YOU care if they go home at the end of the day thinking you're a sandwich short of a picnic? As long as they are doing everything THEY can do for your child, that is all that matters.

    Whenever I've encountered someone who I felt was barking up the wrong tree (or even barking mad) I've usually stuck with them at least long enough for them to discover that they've got it wrong. If for whatever reason I'm gone before they have been proven wrong, I usually still give feedback, but in a positive light. [Comments in square brackets arewhat you really are thinking; not for publication]. "Hey, Dr S, I just thought I'd drop you a line to let you know how well my child H is doing. I know just how hard you worked on his case [you were a lazy B who did nothing] and how baffled you were by his symptoms [you thought it was all in my mind, you lousy hypocrite]. Well, you will be pleased to know that he has finally been diagnosed. Dr K, who graduated from City University in 2004 [he's a young whippersnapper, wet behind the ears, and he could do far more than you ever did] recognised a key symptom and connected it to a paper he'd recently read [at least HE keeps up with his reading]. I just thought you'd like to know, we've finally got an answer. Thank you for all you did for us [thanks for nothing, buster]."

    Not only does it close the circle, it also is VERY therapeutic (although only if you don't put in the stuff in square brackets). And there is always the chance thay you have successfully made your point, and the old doctor will be a bit more careful with the next tricky patient to walk into his consulting rooms.

    IN other words - don't walk away too readily. Instead, stick around, be as compliant as you can and in doing so, give them plenty of rope.

    Medicine is an inexact science. They really DON'T know everything. And getting to the answer is tricky, it's like walking a minefield in the dark, but with a pencil and paper and torch so you can mark on a map where you've been and use the torch to see to the next landmark. You will make some silly mistakes, make some wrong conclusions, but it all comes down to the doctor having a hypothesis and then testing that hypothesis. Whenever a doctor refers you to the wrong people, it is still a valuable learning exercise, because THEY will each write back to him and say, "What were you playing at?"

    ANd after the doctor has ruled out idea A, idea B, hypothesis C, possibilities D, E and F, eventually he has to get to some more likely answers. He will make a lot of mistakes along the way but if he is sufficiently persistent (and so are you) then he will get there.

    We first suspected there was something wrong with difficult child 3 when he was just over a year old. But all the health professionals I asked said there was nothing wrong. The clinic sister said, "He's fine, he just has a head full of brains." But as he got older, 18 months and still not talking, the clinic sister suggested we put our names down for speech pathology assessment. Unfortunately for us, that clinic sister left (died of cancer) and the one who followed her was more interested in difficult child 3's diet than his language delay. I lost continuity - a big problem, when you're trying to get your child diagnosed. I changed jobs at that point and it was the child care people who finally blew the whistle on me and called DOCS on me for "emotional neglect". By this stage I had been told to stop wasting the doctors' time, so I was very upset and very angry. However, I faced it and I won, because I could point to the records to show we had been looking. And the very same people who I thought were idiots who were persecuting me, were the ones who turned round and said, "We can't help you any further, but we can tell you this - you are a good mother, and we think your child probably does have some form of autism. We've done more testing than we should hve, the next people you need tosee for some good answers are here..." and they handed me a piece of paper. I doing this, they went far beyond the scope of their task but I was very grateful, they saved us some time. And I had been angry with these people for wasting MY time!

    difficult child 1 - the process to get him diagnosed took 8 years. difficult child 3 - from my first enquiry at 12 months, to final confirmed diagnosis at 3 and a half - that's 30 months. He missed out on vital early intervention, because of this time-wasting. But it is the system at fault, as much as individuals.

    A strong suggestion for you - write all this down. In other words, set yourself the task to write the book of your struggle with your child's diagnosis. It will document it all (which you need) and also help you keep track of everything. It also helps keep it in perspective. You can lose yourself in the struggle to get answers for your child. Writing can help you find yourself again.

    YOu've been down this road before, in different ways. Butwhen your childlooks normal, the story is very different.

    Hang in there. It's a rough ride, but it does get better eventually.

    Marg
     
  17. Matty's Mummy

    Matty's Mummy Member

    Thanks you all for helping me out with my online (real life) panic attack \.
    Ok so I have slowed down even more from my last post lol, and even more so since reading your reply’s Marguerite. The kids are in bed so I have some time to reply though I dont quite know where to start lol

    SRL
    I didn’t think he really fit the criteria.

    Ours are really different but then in some ways the same,. Like I dotn have a thing about “germs, the toilet, bathing, whistling, blowing into cups before I drink, I have never rubbed a spot on my head and lost hair. These are things my does. What we do, do the same is walk back and touch a part of the wall, he will return and step over crakes in the concrete I will think about it.
    Matt is actually not doing much in the way of Obsessive Compulsive Disorder (OCD) right now, just a few things that are now part of “just what he does” (with no anxiety, he just does) 1, blowing into cup before drinking and only if someone drinks from it first (so we don’t drink from his cup, well mostly) 2. He licks his hand or arm then blows on it, a few times then wants to wash that part of his arm / hand. 3.blow in his shoulder or some part of his body only while he is playing on the computer or watching TV or should I say lost in TV. 4. Hand flicking is still having and another thing it’s kind of a typical thing for kids to do but I’ve seen kids with Autism do it as well. Just the way for no reason at all he will jump around shaking his hands and make silly sounds. I keep wondering about this.
    That is really about it, the only other thing he does at the moment is if he is upset (a sib has taken over the TV say) he will lock himself in his room or mine, calm and return or sit in the pram and pull the sunshade over himself. The Occupational Therapist (OT) said the pram thing is for deep pressure…
    Personally I really believe our Obsessive Compulsive Disorder (OCD)’s are different.

    I never thougth about the Obsessive Compulsive Disorder (OCD) in this way, I thought the anxiety was there or started because he was experiencing Obsessive Compulsive Disorder (OCD) and didn’t know what was happening, and now I’m thinking that through it’s clear it’s the other way.
    I forgot to consider what I couldn't see.
    You see I thought he was having Obsessive Compulsive Disorder (OCD) stuf then he was breath holding.. Early stuff and that was Obsessive Compulsive Disorder (OCD), and then he became anxious because he didn’t understand why he wa blowing…
    Now reading how you put it, it makes much mro esence, that he was feeling anxious from the trauma in the hospital and from the pain, then developed the blowing as a way to cope then that because possibly Obsessive Compulsive Disorder (OCD) maybe not, maybe it’s just a stimulant
    Or like my eldest had a tic. Hmmm (hope I have that right it makes more sense, I’ve been really focused on it all being Obsessive Compulsive Disorder (OCD). And his Occupational Therapist (OT) didn’t think so either but she couldn’t’ explain a few things, like him doing flippy things with his hands, so I figured it was Obsessive Compulsive Disorder (OCD).
    Yes he used to do something that looked like he was playing invisible basket ball,. Every time we went shopping.
    Thanks this is helping me so much, it’s clearer
    Yeah a full on anxiety attack online, lol this is exactly how I was feeling.
    And yes I think we will have to endure it, I knew it and that is why I didn’t walk out.
    She said to me, once I calmed down a bit, “I thought you were going to walk out, I thought we had lost you” I said “no I need help with my son” then she went on about how they have the most success with people that are driven by wanting help for others not them selves… I didn’t’ get what she was on about, my head was still spinning.
    and I’d like to understand what is happening to me more. but wish now I waited, but hen it all might turn out hey!
    I just really want a “top up”/ My last visit with my psychiatrist he said I was right and could manage, I did really well for the first 2 years I still had all the information and our talks clear in my mind, so when things started I would call on this and it got me through. His wisdom mixed with mine, is slipping and I need some back. I’m sure talking it out with him over a session or two is all I need to help me if it / when it starts again. I think this is what frustrates me, this is of cause separate to Matt’s stuff.
    Hmm I don’t know for sure I only knew of Community Health Services, so I hadn’t questioned it.
    I cant believe what they put you through. Surely with so much information around they could get something better in place then the current system.

    True, like the religious stuff she asked me, how much I have told my children about Christianity. Which is nothing. Then I explained why, but I couldn’t’ help think, she isn’t believing anything I say.
    lucky though my easy child daughter 14yrs has spent time with one of the phycologist from there group, Tay had many sessions and I guess if she had religious **** like I do in my head it would have come out. I’m sure the therapist will all talk and that is a good thing. Because I’m sure my daughter’s therapist will set her straight. I truly think she is just running off on a tangent….

    Yes true they cant, I hope. Reading how you put it how they do things it makes me more relaxed, I’ll think of it as a process we have to endure lol
    Makes me think of a movie I watched, true story child is stolen from the house, parents are first accused.
    What we are going through is nothing to that, the frustration of your child out there getting further and further away and no-one is looking cause they are pointing the finger at the parents. that is a nightmare.
    Though I believe laws in the USA at lease have changed when kids go missing they cant accuse the parents and have to act on finding kids first. So hopefully one day they will do this when parent asks for help for their kids like ours.

    Well good thing I never ran ha, what I felt like doing and still will do this. Is I needed the best there is in our country straight up, stuff going to straight out of Uni therapist.. At least if we had a team that know there stuff we would get the right diagnosis… I wouldn’t’ just go to another health clinic or Doctor, I want a team of the best. Well hopefully they will search this out for me when we get through the ****.
    I really dotn want to do the ****, I wish we could go straight to the top. We are going to be in Brisbane in April so if I can get an appointment then with someone I will, but still keep seeing these here as well.

    I wish you never said this, now I’m going to keep thinking on it.
    The school has all this stuff in place for Matt starting Prep, because the special school I took Matthew to requested it. Then when he went great at school one of the Aides said to me, how they didn’t need any of it and Matt was one of the few best kids… then she said if the special school didn’t send over, information about how he acted there, they would never have believed, it was possible, Matt could be how I said he could be.
    So now you say this, I’m so grateful the special school has seen him, at his worst.

    Good thing you said this cause knowing me I’ll be slack and not follow though.
    I dont really have anyone that has been around that could say Matthew wasn’t always like this. We left Brisbane when I was pregnant and really isolated since. My son with Ds, his therapists have been few and far between.
    We don’t have a
    Health care Plan so I will follow this up.

    The teacher
    Lol well, after I posted today I picked Matty up from school
    I asked the teacher when parents could start coming in to help.. It will be second term, I cant wait.
    Then I asked about how readers.
    She said they will start next week. I asked “how will she assess, which level to start the children (um my child) on. Your not going to believe this, she said ‘they will start with pitcher books and she will have activities we can do” lol I “oh please could he have reading books, he loves to read a book every night before be anyway” she said “NO, pitchers is enough at this age”
    Well the look on my face I honestly couldn’t hind it, but I quickly thought it’s ok we will just keep reading home books no big deal” the moment my thoughts were processed, she said “Oh Matthew, that is right I listened to him read to me today and, yes he can read cant he? He can have reading books”
    ARRRHHhhh I’m wondering if, yesterday go the better of her and she checked things out for herself today. Lol I had to tell my husband and we had a good laugh. Kinda seeing her asking Matthew to read to her.

    So I think that has taken care of it’s self.

    Thankyou for all your help on dealing with this the Doctors.. And the like…
    Now I just have to get a grip on my anxiety and not fall apart with there questions that will do me more harm….All I could think about was how me getting help was stuffing up Matty getting help.
    At the moment he is pretty good it’s just if anything big happens I worry he will go back to how he was. But then look at school he ahs coped great we have done a lot of work for this to happen though.
    I best get some sleep before the boys wake. Thanks everyone again, and for putting up with my panic totally freaking out….
     
  18. Marguerite

    Marguerite Active Member

    I nearly didn't mention Munchhausen's by proxy, because I did worry that you might obsees about it a bit. But I decided to because I felt chances are, if you herd about it from somewhere else without what I had to say (about you just not fitting the description) you might worry even more.

    The thing with Munchhausen's, the people with it KNOW they are causing the problem. You can't have it and not know. But one of the hallmarks of it, is someone who deals with the risk of being found out, by grabbing the kids and running. Also, the type of things the kids get diagnosed with, tend to be the sort of "I think it could be this but I'm not certain," type of thing. With the history with your kids, you can't fake a cleft lip and you can't fake an extra chromosome. So on the remote offchance some idiot ever tries to suggest that this applies to you, the best defence is to stand your ground and say, "Yeah? So how would I have faked THAT, huh?"

    From the point of view of medical staff, they always have to consider all possibilities, including the ridiculous ones. But with the silly possibilities, they should be able to reject them fairly quickly also.

    Example: with difficult child 3, the first thing they wanted to check (because he had language delay) was, how is his hearing? Could he have a problem there? So they sent him for a hearing test (not easy, in a kid who doesn't understand what you want of him) and also had a look down his throat and in his ears. Next hypothesis - he was emotionally neglected, not being stimulated. But they observed how we interacted with him and also with each other and quickly dismissed THAT idea. difficult child 3 was at that time interacting with us to some extent, playing some games with us (and especially with easy child). He also was remarkable with the way he could read numbers, letters and some words but they also observed at this point how obsessed he was. Next hypothesis - I was obsessed with teachnig him numbers and letters, I had been cramming him with it. But if so, what about the other kids? And what of the home environment? They would have seen fairly quickly, looking at me and our home, if I was over-stimulating difficult child 3 to the point where everything he looked at was only numbers and letters. Clearly, it wasn't. difficult child 3 was also playing the piano and was obsessed with listening to music. He willingly took himself to the piano and to the stereo speakers and the way he handled it all competently (which was amazing for a toddler) showed them that he was actively seeking this out, not having it forced onto him.

    They had to consider all these negative options because it does happen, there are weird parents out there who do horrible things to their kids. It's annoying to sit there while they consider these insulting ideas, but if you stay the course, you come out the other side with credibility and a chance to finally see some action in the direction you want.

    I'm glad you feel a bit more in control. From what you describe, some of the things you've labelled as Obsessive Compulsive Disorder (OCD) could well be stims. The hand-flapping, certainly. A young boy who lived in our village for about a year was a very bright 6 year old when we met. He's high-functioning autistic, being home-schooled. His obsession was electronic circuits, he actually wired up the little chip from a singing birthday card (which made it play "happy birthday" when the card was opened) to a pressure switch which he placed under a mat outside his bedroom door. That way the kid had made a rather novel "burglar alarm" of his own, every time anyone stepped on the mat, you would hear this tinkly "happy birthday" playing. Yes, I saw this for myself.
    We went to the beach with this boy and his parents. difficult child 3 and the boy were having a wonderful time, you could see form their faces how happy they were. The little boy was sitting on the edge where the waves wash in and out over you, and his face was a picture of delight. His hands were held at shoulder height and were flapping, over and over. Constantly. The boy was stimming, unconsciously so, because he was excited and happy.
    difficult child 3 has never flapped his hands, but the same effect can be gained by looking up through a tree at the flicker of light through the leaves. And he's ALWAYS done that, from a week old. I remember being amazed at the intense fascination he had for looking at trees. difficult child 3 always loved it when I walked as close to the leaves as possible, often letting the leaves brush across his face. He liked his face right up against the leaves of a tree. I picked a single leaf and held it for him - not interested. It had to be lots of leaves, on the tree.

    You mentioned your difficult child rubbing a spot on his head until he rubbed it bald. difficult child 3 did something similar - he would pick at a scab or a scratch until it bled. He has scars on his arms because he keeps picking at small sebaceous "pimples" and really makes a mess of himself. It looks like psoriasis, it's so bad. He had a ganglion removed on his wrist and it was healnig well, but then he picked at the scar and opened it up again. It took months to heal.

    When he was 8 he was hit on the head with a stick (some 'charming' kid at school) which left a small scab. But he picked at it over and over until there was a large crater, the size of a 50c piece and quite deep. I couldn't put a bandaid over it, I didn't know what to do about it. We put gloves on him a lot through winter and dabbed ti-tree oil on it. It took about ten months to finally heal.

    If he has a small hole in his clothes, it will be a huge hole by the end of the day. He's better than he used to be, I can now often patch his clothes and save them that way. But I've avoided buying his clothes new, because he would chew them or tear them. difficult child 1 was just as bad.

    Some of what I describe is stimming, some of it is Obsessive Compulsive Disorder (OCD). Anxiety can make them all worse; difficult child 1 had trouble at school with teachers yelling at him to sit still and be quiet, which only made him more fidgetty and he made even more noises. He often was unaware of the noises he was making. With difficult child 3, the teachers knew better than to try to contro lthe noises. Howeve,r difficult child 3 was aware of them (I suspect he was getting bullied a lot over his noises) and his vocal stims/tics are now much quieter.

    A suggestion - don't refer to your son's behaviours as Obsessive Compulsive Disorder (OCD). That is you making a diagnosis which may not actually be correct. let someone else make the call. You can tell them, "He rubs his head until it's bald, he blows on his cup, he flaps his hands," but let the health professional try to work out why, how and when.

    Another suggestion - I've at times had doctors get angry at me saying, "He has autism." Or with my own medical condition, I had doctors who didn't believe in the condition as a diagnosis, say, "That doesn't exist," and show me the door. So my current tactic is, "We've been told the diagnosis is ..." because that way if the doctor says, "That's crazy," I can reply with, "Don't argue with me about it, argue with the doctor who made the diagnosis."

    Stay cool, Matty's Mummy. In more ways than one! (hey, at least we're not in Melbourne!)

    Marg
     
  19. Matty's Mummy

    Matty's Mummy Member

    With have a child with Down syndrome, our house has pitchers of animals object…. and sign language pics and font, to go with them all. So I’m buggered if they think I’m pushing Matthew lol No just kidding it’s all aimed at A’s level not Matt’s
    yes ok good point
    It was the Pead who said possibly Obsessive Compulsive Disorder (OCD), but the Pead Occupational Therapist (OT) has put just about all of it down to Sensory disorder.
    What I need from mental health (M/H) is for them to look at all the “quirks” (as the Pead called them, with the possibility of some being Obsessive Compulsive Disorder (OCD))but they need to figure this out, what is what. I had hoped going to them they would have more of a team, that could possibly work this out.

    Instead they freaked me out with “It’s learned behaviour” oh and another thing I forgot to mention is, they want me to take Matt to their Psychiatrist, who specialises in Kids. So that is great, only I did make it clear I wont be putting him on medication. I did also say (as I did to the Pead when she mentioned medications) was that I would only go down the medication path if he went back to how he was, when he had all that anxiety but only if it didn’t’ go, I’d give him time to work through it first…

    I’m taking notes thanks and will remember this for if we ever get a diagnosis.
    Sounds like you’ve been through it all, which is helpful to me but Geesh it’s a lot to deal with.

    With Matt’s hair pulling once we told him and showed him the spot, it wasn’t long and he stopped which was good.
    Once the Occupational Therapist (OT) sends me her report we should be able to get a clearer pitcher of what is sensory and what’s not.

    So far the school has been wonderful, I really wanted a diagnosis or something to give them but it wasn’t needed. It was good they put so much in place by what the special school had sent over, which wasn’t much.

    We have noticed a huge change in Matthew’s behaviour, since cutting out some foods mainly fruit.
    I did mention this to them but didn’t’ really get a response.
    Is it worth perusing this food stuff with them or do that on my own separately? It’s just I know the Pead was and doctors see m to have once response ‘alternative” even vitamins for my child with Ds the Pead said they aren’t’ needed and are “alternative” then she doesn’t’ discus it further.

    any thougths on this ?
     
  20. Marguerite

    Marguerite Active Member

    With the food stuff - you're talking about the possibility that food sensitivity could be aggravating his condition (whatever it is). It is too complex to do it hit-and-miss because in general, the problem is due to one or more of the various naturally-occurring chemicals in food. For example, a lot of foods which are noted for strong flavours contain salicylates (related to aspirin). Herbs, Vegemite, honey and most fruit & vegetables.
    Other natural chemicals include glutamates (also in Vegemite, I think; and in soy sauce); amines (in chocolate, bananas, tomatoes). There are more.

    We dealt with RPAH in Sydney, the top bloke there is Rob Loblay. Not only good at this, but reputable and reliable. His work on this has been going on for decades, he's been published on this a fair bit. But in recent years a group connected to him have been working on food sensitivity in kids especially kids somewhere on the autism spectrum. We were told that about 30% of these kids had problems that improved when certain foods were avoided. To test each child for which foods, the child has to go on an Elimination Diet, a very bland, very restricted diet that eliminates all suspect food groups. By the time we saw them, difficult child 3 had been on a milk-free, yeast-free diet for some weeks with no improvement. The symptom we were trying to sort out was nausea and vomiting (which later on was identified as due to acute severe anxiety).
    So when we saw them, they said we could speed up the diet by no longer fussing about keeping his diet milk-free and yeast free. That made it easier.

    But a full elimination diet - it's only potato (no skin), pears (no skin), lemonade made with sugar and water only, chicken with no skin (small quantity) and lamb (small quantity). difficult child 3 had to be on this for six weeks, I think it was. Not fun. And yes, he lost weight. It is not something to do without careful medical supervision. With the RPAH Allergy Clinic, they had some capsules for us to try (single-blinded) once difficult child 3 had been on the diet long enough for his symptoms to subside. But because he was back and forth to school during this process, we never got his symptoms under control so we never got to the capsule stage. What was supposed to happen - difficult child 3 taking the capsules carefully, one at a time with three days in between (or longer, if he had a reaction) was to help identify which group of foods was the problem. Once we got the group, we could then go in and identify which foods in that group were the problem. It seemed cumbersome, but it was a more reliable and actually faster method.

    If you want to check it out, talk to your GP about it and get the doctor to look up RPAH Allergy Clinic and the doctors there. They may be able to help long-distance or maybe point you to someone more in your area who is connected to them. And because this was through a hospital clinic, it was bulk-billed.
    End result for us - diet is not an issue for difficult child 3, as long as he avoids caffeine. A small amount in chocolate and decaf coffee is OK but cola is a no-no. And now we know this for sure.

    One important thing about Rob Loblay and his team - in no way are they 'alternative'. In fact, a lot of the alternative medicine community hate his guts because he is a stickler for the rules being followed and really hates to see unscrupulous practitioners ripping off patients. I met him personally, discussed this and other issues with him a number of times. So possibly mentioning his name could make a GP at least a bit more receptive to considering this.
    Otherwise, I'd leave it for now other than to test single foods as you have done. Another option for you to try on your own is to eliminate artificial food colourings and preservatives. Some preservatives are natural (ie salt, sugar). Or you could test milk, but don't take something out of the diet and substitute with a new something else, because if he's reacting to both (ie to dairy, and soy) then taking out one and substituting the other will give you a confused result.

    If you're going to do this, take notes. We had to keep a diary for difficult child 3. It was mandatory - we'd have been dropped from the trial if we'd not complied.

    As for the shrink - don't sweat too much. Nobody can put your son on medication if you don't want it. And while they're trying to find out what is wrong, they shouldn't medicate. There are other ways to help someone deal with anxiety - difficult child 3 had CBT (Cognitive Behaviour Therapy - it's all teaching him to think in a more positive, useful way) from a psychologist (covered by Medicare under a Health Care Plan). difficult child 3 has just started seeing a child psychiatrist who specialises in autism. I wish we'd seen this guy sooner, he's opening doors for us. He suggested a change in medication, but it's looking like it won't be possible because the first step was to switch difficult child 3 to Strattera, and that was a disaster for us. Three days, and we knew it was a mistake.

    HOwever, with medications - we made the controversial decision to allow ADHD medications for difficult child 3 which he began at age 3. I doubt very much that this will be suggested for your son at this stage - his anxiety would be a concern. However, I wo't second-guess because you never know. Besides, I'm certain that if difficult child 3 was taken off his stimulants, his anxiety would get worse because his ability to cope would plummet.

    I would suggest following up on leads suggested, and wait until you're faced with a decision before you let it worry you too much. In other words, cross that bridge when you come to it. You may never have to worry about it.

    difficult child 1's first GOOD specialist was a child psychiatrist. He was a nut job himself, but he really understood difficult child 1 and was very helpful. We only moved on because he was getting a bit TOO wacko, plus we needed someone to see easy child 2/difficult child 2 and difficult child 3, and this bloke couldn't take on any more patients.

    You sound like you've already done a lot of observation and testing yourself, which is all very useful. You need to become a scientist with it all, learn scientific principles and apply them. Have faith in yourself, in your ability to observe and to be a valid recorder of your children and their quirks. Never forget that as their mother, you are a vital link in the health care team for your children.

    Marg
     
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