difficult child is up to old tricks

Discussion in 'General Parenting' started by wolonfab, Dec 15, 2007.

  1. wolonfab

    wolonfab New Member

    Hi all
    Been a while cause we have been struggling to be heard by school and doctors etc. we had difficult child trialling new medications again after his cut his wrist again in the hols. they had him on concerta(no good) and then Strattera. They keep saying he has ADHD But I disagree cause the medications arent working.... the strattera was ok for 8 days then he got mean and violent & was self harming again. :bloodshot:

    He tied a scarf around his head to choke himself and has bruised his neck.. luckily when he couldn't breathe he freaked and I had to get it off him quick b4 he passed out. He has been slamming PCs head against floor in anger and laughing as he does it. After breaking my nose he most recently kicked me in the head 4 saying no to him. Two days ago he also decided to electrocute himself with a plugged in power cord. he thought it was hysterical But I did not. :crying:

    I called his paed last Monday after the beating of his sister and the choking incident and re-called on Friday begging receptionist 2 get him 2 CALL ME CAUSE MY SON WAS HURTING HIMSELF. She replied with he is busy...he will get in touch when he has time...My response was to remove the medication from the boy.......and now he is back to eating and though aggressive its not as severe as when medicated....When i say that though you all know what he is like so imagine that twice as bad on medications

    What annoys me is that the Paed says this medication was all we have left to try and that he shouldn't react at all to this cause its a non stimulant..... The only other choice is anti-psychotics which is scary for his age supposedly. Mental health saw him last week and he refused to talk at all to her...he would not look at her...she finally got his depression cause she says he needs more intensive help and why is he on medications when the pyschiatrist said no to them...i told her if she had to live with his threats & attempts of harm then she would also get to that stage.

    he was sleeping in his bed but he is now back in mine and has been hearing voices again and things are in his room on the roof..... the voice tells him to do bad things and calls him names etc.... I want to cry cause his language is that bad and his sister is emotionally a mess...she tells everyone now her brother beats her up. his answer for everything is to call me horrid names that would make any mum cringe. His sister is copying his language and I am having to punish her for something she doesn't understand

    I have asked for respite care but have yet to find a place cause no one wants a self harmer with aggressive violent tendencies in their home..... easy child (i have been told) has problems with speech and I have to get her seen to now and I am tired cause its Christmas... :blizzard:

    One good thing is. My son has however gone out and got pressies for everyone out of his own money this year.....He picked them and wrapped them. I love christmas But i find it exhausting......:elf:

    hMMMMMM now I have depressed you all I will go and retreat to my hole and pray that next year is better than this year has been...... i keep believing its going to get better cause if it gets worse he just may really get hurt :nonono:
     
  2. Big Bad Kitty

    Big Bad Kitty lolcat

    (((((((((((((((((hugs)))))))))))))))))


    Wow, you have your hands full. I am so sorry. Heartfelt hugs and prayers your way.

    I don't know your system down under (I am sure Marg will be along later with a wealth of knowledge for you) but it seems that your son needs more than he is getting, through no mistake of your own.

    ALL the ADHD medications you mentioned are stims! and if your son does not have ADHD, he should not be on them. It could cause problems down the line (And here, I hope that Sara PA comes along, if anyone knows side effects of medications, it is her).

    I certainly hope that something comes through so that you can get some peace of mind. Keeping you and the little guy in my thoughts and prayers.
     
  3. nvts

    nvts Active Member

    All I know is that since my son started Concerta 2 years ago, the first thing psychiatrist asks is "are you hearing any voices telling you to do things that are bad or dangerous". I have to think that this has to do with the medications or confirming his diagnosis.

    I'll be praying for you...I'm really sorry to hear you going through all of this, as well as difficult child and easy child!

    Beth
     
  4. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Good heavens! This makes me so mad. Why won't they let him see a neuropsychologist? If he's on the spectrum, and there's a chance he is, medications and mental health services won't help him. He may not have a psychiatric problem at all. This could be strictly neurological. Can you get a different sort of evaluation for him? He seems "more" than ADHD. My son was first dxd. ADHD too and he was worse on ADHD medications. I hope you can get him the right help.
     
  5. Steely

    Steely Active Member

    Well, in my opinion, I would immediately take him off of the stimulant medications. ASAP! In a mood liable child, those medications can cause all sorts of instability.

    Second, I would hospitalize him, so that they can do a thorough evaluation and medication wash, before starting him on anything else. He sounds too volatile to do anything but a hospital stay at this point.

    Third, after giving him a month off of all stimulant medications, and if the problems are still there, I would then ask the psychiatrist about a mood stabilizer. Something like Depakote, or Tegretol, or Lithium.

    I know it is Cmas, but I would not hesitate on getting him into a psychiatric hospital., he sounds like he is spiraling downward, and could hurt himself or others soon. He needs to be somewhere safe.

    So sorry you are going through this............big hugs!!!!
     
  6. Marguerite

    Marguerite Active Member

    Hi, sounds bad.

    Stims aren't working - I'm inclined to your opinion, this is sounding less and less like ADHD.

    About the anti-psychotics - I can't give you any assurances there since your son is so different to mine and you're understandably gun-shy with medications, but I CAN tell you - difficult child 3 was started on risperdal when he was 7 or 8 years old. He had been started on Zoloft when he was 5, but it kept him awake so badly that we had to take him off it, any benefit was outweighed by difficult child 3 getting 'wired' and not able to cope with the lack of sleep.

    Our experience with risperdal - difficult child 3 had no problems on it. The trouble was, he also had minimal benefit, and for the cost - unless they label him as psychotic (which I didn't want for difficult child 3, but it sounds like it might be worth considering for your difficult child) then you're up for the full non-PBS price, which is about A$70. Depending on dosage, one box could last several months. We got six months out of one box for difficult child 1.

    difficult child 1 did find some benefit, but he had to take such a low dose because of the side effects, that we didn't get to see much.

    Side effects - you will love them, I suspect. He eats, and he sleeps. difficult child 1 had to limit his medications to quarter of a tablet, taken at bedtime. He would be asleep half an hour after taking it, so taking it during the day was unworkable for him. And he doubled his weight in six months. Started skinny, then ended up chubby. When we took him off the risperdal, the weight came off again.

    difficult child 3 - may have had a small amount of weight gain (yet he was on three times the amount that his big brother was) and no sedation. But it did seem to ease the anxiety and 'edginess'. When we took difficult child 3 off it, he lost weight which concerned the doctor. He went from 35 Kg to 30 Kg in three months, at age 10.

    As for hospitals and other services - you could TRY taking him to Emergency when he's in crisis (such as just having choked himself, cut himself deliberately, trying to electrocute himself) but with the long waits, I don't know if -

    1) you could stand the stress of the waiting room for hours, or

    2) he will be displaying problem symptoms by the time he is seen.

    For the benefit of those not in Australia - we have a good health system, but where it falls down right now is in mental health care, especially for children and especially over the Christmas break.

    Taking him to hospital each time DOES keep a record on the books if his history of self-harm and violence to other people. You need that for so many reasons. If your local hospital seems to be disinterested, then maybe arrange for his next severe outburst to happen while in the vicinity of a much larger specialist children's hospital. "I was visiting friends in the Westmead area when this started happening, so we came straight round..." It's cheeky, but it might be the angle you need (shouldn't have to be so sneaky, though).

    Have you talked to the police about what you can do, using their resources, to keep yourself and your daughter safe? They aren't able to do as much as the police in the US do, but they may still be able to fast-track some services, or access to them, that you're struggling with right now.

    I know you are doing absolutely everything you can, you are a smart person who works proactively on this, as far as you can. I am amazed at just how much you have tried, and still not had the help you need. This is a failure of our health system, not a failure in you.

    How are you going, otherwise? Are you managing to stay in the workforce at all, or has all of this killed any chance of working? I hesitate to suggest Distance Ed to you, you would have even more time with him being difficult. You really do need to get some sort of handle on this, a diagnosis that fits and some viable treatment. I can really feel your frustration - I really don't know how you've coped even this far.

    Is there a support network for childhood bipolar, or schizophrenia, or similar? Maybe they would have some pediatrician names you could see, "for a second opinion". The risk is seeing someone and getting a revolving door diagnosis, but your current bloke seems to be ineffectual at the moment.

    A thought - don't know if it will work - if you ask to talk to him and he is unavailable, can you ask the receptionist if he has a locum you could call, or what else she recommends in an emergency? Also when you DO see the doctor, explain how you desperately needed to talk to him the day difficult child was braining his sister and trying to electrocute himself; what can you do in such a circumstance? If you can set up, ahead of time, making contact, then when you next are in crisis and talking to the receptionist you should be able to say, "Dr H told me to contact him immediately, he said he would get back to me..." (or whatever Dr H tells you is the procedure in this situation). Hopefully the doctor will set out an emergency management plan for crises like this.

    If he won't, find another pediatrician. And I don't say that lightly. But while this bloke doesn't seem to 'get' the severity and desperation of all this, he won't really understand what you are dealing with. A support network hopefully will have some names of docs who DO get it, who WILL be there for you. And if you have trouble getting a referral, then go find a bulk-bill clinic somewhere, they usually are happy to hand over pieces of paper just on your description of the problems. This is one time when that is useful.

    Marg
     
  7. DDD

    DDD Well-Known Member

    Just sending a supportive hug your way. I have not had to deal
    with self-harming or consistent violence so I'm no expert. My
    difficult child who is now a teen did start on Risperdal quite young and it
    made a remarkable difference with no side effects. Although I appreciate that each parent has to make medication choices, your son sounds as though he is a danger to himself and others....plus a
    frightened, miserable boy. Given those circumstances I would
    think medication would be a safer alternative.

    I do have decades of experience with ADHD and stims. It is very
    obvious that none of the stims nor the Strattera are the right
    medication to help him. Best of luck to you and yours. DDD
     
  8. Marguerite

    Marguerite Active Member

    The scary thing re medications, DDD, is that so far everything has been disastrous, and that is on the (considered by most people to be) fairly 'safe' stims. There is that underlying fear that if the stims were that bad, how will he be on much stronger medications?

    But I do agree, however, that things as they are - definitely not good to let it continue.

    Is he too young for antipsychotics? Maybe a question for Sara. But is easy child too young to have to live like this? Definitely.

    Not an easy situation, and a very bad time of year to be trying to get help.

    Mind you, I was impressed at his personal organisation and generosity with Christmas.

    Marg
     
  9. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Just adding my hugs, you have gotten good advice. I hope your difficult child is able to see someone soon.
     
  10. Mrs Smith

    Mrs Smith New Member

    I wonder what this pediatrician considers a "real" emergency? Who in their right mind would see this as anything but an emergency? Maybe next time, skip the doctor and go right to the er? And then find a new doctor.

    Your situation sounds dangerous. If an outsider was looking in and saw this scene, what would they think? You know if it were their kid, they would be running to the hospital. That's what I would do. Now's the time to be aggressively looking for help - this problem is NOT going away by itself.

    If it sounds like I'm trying to scare you - I am. We tend to normalize things that really aren't - I do it myself. When I'm in doubt, I always play the fly on the wall game - what would an outsider who was looking in at the scene think? Stay strong long enough to find the help you need. Good Luck!
     
  11. smallworld

    smallworld Moderator

    Marg, you ask a very good question. From what I've been told by several psychiatrists, Risperdal or Seroquel (don't know if you have the latter in Australia) are the first antipsychotics generally trialed on young children. Both medications will settle anxiety, aggression and hallucinations (hearing voices). The common side effects are sedation and weight gain. The not-so-common side effects are dystonia (uncontrollable movements) and akathisia (internal and external restlessness that can be mistaken for anxiety or agitation). This is my mom opinion -- and clearly I'm not a doctor -- but because this difficult child is getting so little help from anyone, I'd give an antipsychotic a try. If the antipsychotic works, I'd recommend a mood stabilizer be added in for long-term mood stabilization.

    What makes this a compelling case that what is going on is more than ADHD is not that the medications aren't working, but rather the behaviors that this difficult child is exhibiting -- harming toward self and others, suicidal tendencies, hearing voices. All of these symptoms go way beyond the scope of ADHD.

    Wolonfab, I hope you get some relief soon. Hugs to you.
     
  12. Sara PA

    Sara PA New Member

    Strattera is an antidepressant, not a stimulant, and like all antidepressants it has warnings about suicidal ideation/behavior. From the examples I've seen, that ideation is not related to depression but to impulsive -- even compulsive -- behavior and often involves choking/hanging. The biggest risk comes within the first 10 days of taking the drug (though it never goes away for those who are tripped into mania by antidepressants). It sounds like you saw that adverse reaction. For the doctor to assert "he shouldn't react at all to this cause its a non stimulant" shows either a lack of knowledge about the drug he is prescribing or an unwillingness to believe in adverse reactions. Red flag about the doctor as far as I'm concerned.

    Have you had any neurological testing done for brain abnormalities or seizures? There's too much going on there not to do medical testing.
     
  13. Marguerite

    Marguerite Active Member

    And therein lies the rub, Sara. I agree the testing is needed, but for that you need to be referred to one of the major children's hospitals, and most of these docs sound like they're approaching cautiously. Doing tests like that on a very young child - they don't like ordering them lightly because some children who are difficult, will not take kindly to MRI or CT, for example, because of the claustrophobia in the tunnel.

    Someone suggested to us that difficult child 3 have a functional MRI; the pediatrician was going to order it on my request but was concerned how difficult child 3 would cope with it, said he probably would need to be sedated. And we have a darn good pediatrician (not the best, just way up there).

    The other problem doctors are facing in Australia, is HIC - the Health Insurance Commission. This is the body that supervises our national government-based health insurance, Medicare. Some doctors (mostly no longer practising) would see a tricky case walk in the door and order every test they could think of, to get a diagnosis fast. And do that with every patient. This, naturally, was causing a blowout in the national health budget. So HIC was formed to oversee and scrutinise for this behaviour. Because our system is so thoroughly nationalised, every person in the country has a Medicare number. In most cases, under-age members of a family and partners have the same number, just a different sub-number (place on the card - a family pecking order, if you will). This means that medical treatment and tests ordered for each patient can be tracked in a national HIC database - and it is. When a doctor's rate of test-ordering goes above a certain level depending on the number of patients he has - a red flag is raised. Similarly, a doctor's prescribing history is also red-flagged.
    So a doctor faced with a kid like wolonfab's will go more cautiously than I feel he should, purely to protect himself.

    Some doctors like our paed are braver, because he's run the gamut so many times before.

    A doctor who is flagged has to appear before a committee of his peers and justify his actions. Because our paed has a very high proportion of ADHD kids, he gets flagged often for prescribing stims to the majority of his ongoing patients and each time he has to point out that his reputation as a paed specialising in ADHD means that data in his case is skewed and this is all legitimate.

    But a lot of doctors are scared to do anything out of the ordinary, for fear of having to appear before a committee.

    A hospital, especially a large teaching hospital, has more leeway simply because more patients go through their doors. The occasional 'out there' tests don't show up on the radar purely due to the very large numbers.

    This brings us to wolonfab's next problem - why doesn't she just take her son to one of these large hospitals?
    The structure is heirarchical. To try to get an appointment (as you in the US could make an appointment at the Mayo, for example) is not easy. Most people go private - this means that although some of the doctor's fee is covered by medicare, the rest is not. We have to pay out of pocket and hope to claim it back in tax later. In some cases the doctor will only charge the Medicare fee (which is 85% of the set fee) but this is rare with specialists. So a lot of people try to use the public system, which is a system of hospital emergency departments and special "area health services". The need is so great across the country, that these routes are overwhelmed and people are sorted into area.
    Wolonfab's family is in an area away from the bigger teaching hospitals. So she has to go through an area health service (as we did - ours is a different area) and frankly, they are unsatisfactory. Treatment is very conservative, there are waiting lists over a year long at times and only aftre they've seen you for some months (or more) AND are prepared to admit this is a problem they are not able to help with, will they try to refer up the ladder to someone more expert. This involves more waiting.

    The teaching hospital I mentioned is one of the best. They could help. But if you just turn up at the clinic, they'll turn you away. You have to be referred there by someone who has already tried everything and admitted defeat (and it's easier for a lot of doctors to duck out of tis one because they'd rather say that the kid really isn't that bad, than admit to a colleague that this is a tricky case).

    I suggested taking the boy to the emergency department of that hospital. This would be much more pot luck, you would have to hope that the paed registrar on duty is canny enough to spot a serious problem and call in someone more expert. THEN you might get somewhere. But you'd have to have a good excuse for going to a hospital that is so far from where you live - "we were visiting a friend when this started" is about all you could say. Otherwise, a paed registrar would (rightly) suspect that you are a routine case (not an emergency) who has deliberately travelled out of area as a result of pure desperation, and would send you home with a couple of paracetamol and tell you to call your GP in the morning.

    The system generally works very well, for 90% of cases. But sites like ours are also magnets for those cases which are in the 10%, where problems are just not getting picked up.

    And why am I referring to paediatricians? Because in Australia, that's who deals with this sort of problem. I've not found any Aussie neuropsychs. Mind you, some of our paeds are of that standard.

    Getting back to Sara's suggestion - it would be interesting to see the paed's reaction to you asking for that testing. He does have the power to refer you for an opinion, he does have the power to order the tests (or to refer you to someone who can order the tests).

    Wolonfab, I'm assuming (from things you've said in the past) that you have given up on the clinic route and are seeing this paed as a GP referral. If so, you do have choice to change paed. Technically you could drive to the other side of the city, if you chose. It's just such a darn big city. It might be an idea to at least shop around for the best of the best when it comes to helping with difficult diagnosis's, at least for an opinion. I have a few names in mind, if you want to pm me. One that we saw (for an opinion) - he was able to at least send difficult child 3 in the right direction. He was based in Concord. Sends all his reports out printed on electric blue paper, but was VERY sharp, very cluey. He calls himself a "child, adolescent and family psychiatrist" on his letterhead. We took everybody in to see him, I wanted him to see the whole dynamic so he could see what was familial and what was downright weird. We only saw him once. He wrote a report (very easy to find in our files!) which we were able to use to get Special Education support as well as short-cut to getting the right ongoing medical supervision. before that we were running around seeing just about every idiot in Sydney who was curious but inept.

    With the description I've given you, you might find him yourself (Google White Pages with the professional description) or I can give you more specific stuff by PM if you want.

    The only other thing I can think of is definitely last resort - call Alan Jones? I'm only half joking.

    Marg
     
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