Risk too high – No longer allowed meds

[Anonymous]

Hello everyone,

I am a mum of amazing 9 year old twin boys. K has severe ADHD, ODD and generalized anxiety. He has been doing very well with his medications and has been jumping leaps and bounds academically and seems so much happier.

B has severe ADHD, ODD, anxiety, learning disabilities and is developmentally delayed. He has recently suffered from ‘medically induced psychosis’ and was removed from all stimulants. He started on Risperidal but was soon found to have metabolic syndrome and has now been removed from all medications that may cause weight gain. Our Psychiatrist is telling us that there is nothing further she can do as far as pharmaceuticals to help him.

Our son is really suffering and is very aggressive and abusive. He needs play therapy, speech therapy and occupational therapy but all of these therapists say that they cannot work with him unless he is medicated.

We previously tried the following:

-behaviourists;

-parenting classes;

-stimulant medications;

-anti-psychotic medications;

-play therapy;

-working with family physicians, pediatricians, psychologists and psychiatrists;

-behavioural classes in school;

-dietary restrictions;

-the use of vitamins, supplements and oils;

-various methods of discipline including but not limited to spanking, time outs, privilege loss, running laps, additional chores, reward charts, letter writing, public apologies, working off debts, monetary rewards / incentive, possession loss, rewarding good behaviour & ignoring negative behaviour, natural consequences;

We are at a loss. Our Psychiatrist is the head of the ADHD Clinic at a major children’s hospital in a major metropolitan area. When she says there is nothing else she can do, we don’t have any idea of what we can do next. We just want him to be happy and successful as he can be.

Does anyone have any ideas?

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[Patte Rosebank]

If your child’s Psychiatrist has said there is nothing more she can do, then you need to find another one. Just because she is head of the ADHD clinic in a major children’s hospital doesn’t mean she has all the answers.

The trouble with Psychiatrists is that, generally, their treatments only involve prescribing medications. The trouble with Psychologists is that their treatments only involve non-medication-based therapies. The trouble with this system is that the most effective way of treating any mental condition is with a combination of medications and behavioural therapy. Often, in order for the patient’s brain to be receptive to the behavioural therapy, it is necessary to administer medications to adjust the brain’s faulty chemistry. Like needing training wheels to help you learn to ride a bike.

I am concerned about the use of some of the punishments you listed, because my parents were (and are) very strict. As the child who was always being punished, I know how it made me feel. And I know that I still think of my parents as controlling disciplinarians, doling out the punishment, no matter how hard I tried (and try) to please them. These memories far outnumber the sweet ones.

Punishments can be effective in disciplining a child without ADHD, but you must remember that your child is not being deliberately oppositional. He cannot help it, because his brain works differently. And, being developmentally delayed, his brain is also functioning at a level that is younger than his physical age. He wants to behave, but when he encounters a situation which could be risky or “bad”, or require delaying gratification, his brain lacks the ability to stop and consider the outcome. So he just plunges in and does it, and gets into trouble. By punishing your child for his misbehaviour, you may actually be making him feel like he is a bad person with no hope of redemption. This makes him fight back and he may even grow to hate you for always punishing him—instead of seeing you as the loving mother who is so desperate to help him by teaching him right from wrong.

Of course, he needs to be steered in the right direction, and he does need to learn that there are consequences for his misbehaviour, but shaming him or taking away his possessions or physically punishing him will only reinforce his own feelings of inadequacy and failure—feelings which he can’t describe or understand, so can only express by lashing out. Again, I speak from my own experience as the frequent, repeated recipient of such punishments.

Exercise can be very effective at reducing symptoms. But, if your child has come to associate it with punishment, he will be very resistant to it. Is there any way you can help him to find regular exercise that doesn’t feel like exercise? If he just thinks it’s fun, he’ll look forward to doing it. When I was little, Mom had me doing so many dance lessons and skating lessons and even going to the roller rink on Saturdays, that I was getting over 8 hours of structured exercise a week. No wonder I could concentrate so well in school…even if I did resent the fact that I was so busy that I never had much time to myself.

So, please, find another Psychiatrist and Psychologist for your troubled son. Do not give up on him, as your Psychiatrist seems to have done. He is worthy of being helped and loved. In fact, the more he fights back, the more desperately he’s asking for that love and help.

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[Anonymous]

Thanks for responding.

We are desperately trying to find a professional that can help us. I fully understand that what are boys need is a team effort. We have been trying for years to have everyone work together. The wall we keep facing is that the therapists and psychologists are stating that they cannot help him unless he is medicated. The psychiatrist is saying that she can’t medicate him as he may die from it. This is where we are feeling helpless. Aside from Strattera, which we have tried unsuccessfully twice before, is there any other medications out there that aren’t stimulants and that won’t cause weight gain? She won’t give him a stimulant since he had psychosis and she won’t give him anything with weight gain due to his metabolic syndrome for fear of death. What other meds are there?

I have fought for my boys since the day they were born. I have attended multiple parenting classes, had strangers come into my home to teach me how to help them, have fought school boards all the way up through the ministry of education, I have fought child services trying to get help, despite my fears of the HORRIBLE side effects of the medications, I have let him try several to no avail, I have tolerated years of abuse from my sons and I am exhausted. In 3 years, my boys will be legally accountable for their behaviours. They will no longer be able to have school yard fist fights and walk away without possible criminal charges. This scares the s**t out of me. My husband and I are trying to do everything in our power to help the boys before they get to this point..

No parent wants their child to go through the criminal justice system especially when their child is suffering from mental health illnesses. Our justice system is no place for anyone who has mental health issues. At the same time that I understand that the things my son does are not intentional and, in fact, most of it is probably impulsive, however, he still cannot be threatening his brother with knives. It is not okay. When his behaviours are that severe, how do I get through to him? I know that he is a good, sweet and kind boy. I don’t know how to help control his impulses.

It should also be known that my boys are exceptionally large for their age. They are in the 99th percentile for their age. It is getting harder to stop the physical violence between them.

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[Patte Rosebank]

Are you having behavioural problems with both of your sons, or is it primarily with B? And, when they fight, is there one thing in particular which seems to set them off? Is one boy more likely to start it than the other?

This is a very difficult situation. Have you considered that the situation may now be at the point where your son would have the best chance of success if he were in an in-patient treatment facility? Particularly since you have tried everything to get through to him, without much success…and because he is now so large, and so prone to violence, that his aggression is a real danger to himself and others?

I know it’s a very big and very frightening step to place your child in an in-patient facility. You’ll ask yourself a million times, “Did I give up too easily? Is there anything else I could have done? Will he be happy there? Will they be kind to him there? Will he be safe there?”

We asked ourselves those same questions when we realized my grandmother was no longer able to care for herself. She struggled to use the stairs, and Alzheimer’s was clearly in the picture. When my mother would take her out shopping and to run errands, once a week, Grandma would lash out at her, accusing her of theft (a common behaviour in seniors with Alzheimer’s, who put things somewhere, then can’t find them) and screaming all sorts of horrible things at her. My mother and aunt were seniors themselves, with their own mobility and major health issues, so there was no way they could take her in and care for her. None of us grandchildren could care for her either, because we lacked the specialized medical knowledge and equipment, and needed to work for a living, instead of staying home with her, round the clock. The only way for her to get the specialized care she needed was for her to move into a nursing home. Mom still visits her, a couple of times a week, to make sure everything is all right. But Grandma is doing far better in the nursing home, than she would ever be doing elsewhere.

There is nothing noble in saying, “I will take care of my family member, no matter what.” Just as there is nothing wrong in saying, “I have tried everything, and now realize that the best way to care for my family member is to send him where there are highly skilled, carefully selected & trained professionals, who are far better able to care for him than I am. But I will visit him frequently there and will give him all the love I can.”

In the case of your son, there is also the time factor. As long as he is still young enough not to be held criminally responsible, it is much easier for you to arrange for him to enter a facility of your own choice. Visit many facilities, and talk to the staff, and to family members of other patients there. Find the best place you can. And do it now. Once your son reaches the age of responsibility, all it will take is one arrest, and he will end up either in jail, or in a facility of the court’s choice. There are several ranch facilities which have been very helpful for children with mental and behavioural issues. There’s something about being out there, in the peacefulness of nature, working with horses and other animals, that seems to reach those children in a way that other programs can’t.

How severe is your son’s developmental delay? What is is functional age? Perhaps he needs more help with this than with the ADHD and ODD, at least at first. If he’s functioning at the level of, say, a 7-year-old, his behaviour will be much more impulsive anyway, because that’s the way 7-year-olds are. The medication sensitivity is one more complication. Could it be that, perhaps, the doctor had him on too many meds, and/or at too high a dosage? It’s a very tricky balancing act, especially in children, to find how much is just enough to be effective, without being so much that it causes side effects.

I thought of something else. Does your son have any difficulties in hearing or seeing? Sometimes, a child who cannot see or hear clearly will lash out too.

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[Curlymoe115]

Have you tried looking for resources in your area at “http://www.conductdisorders.com/” these parents have been there done that and a lot of them make incredible resources and advocates. When our oldest was younger it saved my sanity a few times having these people to bounce things off. They have an educational and vocational area and they can help you get the help you need out of the school system in your area. My oldest is also ODD along with a number of different psychiatric disorders. But she was given an incredible dose of stimulants when she was 4-11. Later when we finally took her off the drugs she started to self medicate with drugs and alcohol and because of the addictive personality quickly became addicted. We went through hell from the time she was 3 until she moved out 4 months ago. However I am happy to report that she will be turning 18 in 3 weeks and she is starting to turn her life around. She is making positive changes in her life and trying to stop blaming others for her mistakes. She just got into her own apartment and she is taking a career training program.

When she was small she was 40 pounds of dynamite. She would explode and she could take out a 180 pound man. She was put in a special program that rewarded her for doing her work (didn’t have to be good, just done) and sent her to the time out room for any perceived wrong. The class lost the privilege of science and other core subjects and they slipped further and further behind. She was also the only girl in a class of nine. When we took her off the medication she was still incredibly active. She would get a new therapist only to have the person retire or otherwise leave the field and she was left hanging once more. We always advocated for her but it is hard because these kids are not easy to work with. Add of course the fact that she is the prettiest and most perfect looking child with no obvious signs of problems. So they take this as willful and parents of “normal” kids won’t let their perfect child play with yours so then you are stuck with children whose behaviour is not the kind of modeling a ODD and CD child needs. But that means that you need to be hyper vigilant about who your son is associating with and what behaviors he is learning from them.

Both of our girls are ODD but they always have been mirrors of each other. The difference is that the younger one is more biddable then the older one so we were able to suppress a lot of the fall out until this year. While the older has always been mouthy and outwardly defiant she could still be redirected. The youngest one was always quieter but when she made up her mind dynamite wouldn’t change it. Parenting an ODD child is completely terrifying because they are also fearless. Coupled with the impulsivity of ADD and ADHD there is no telling what could happen. However you need to also remember that you are not alone. There are groups out there that can help and that most states have a program in place that offer respite for parents whether this is for an afternoon or for a weekend. You need to keep healthy and take care of yourself and not let yourself get completely overwrought.

Discipline is also tricky and the method that usually works best is to only discipline for the things that are illegal or have the potential to cause harm. I found reward charts for good behaviour a lot more motivating when there was a reward at the end that they wanted. There is a great book called “Active Parenting” that had some positive steps that can be adopted for these kids and if there is a behavioural program at your school they usually have a list of behaviour modification programs that are in your area. Pictures of clean areas are good because they can look at the picture to try to emulate. And if you don’t challenge them then they don’t have to defy you, so try to get them to cooperate rather then order them around.

Unless you have a million dollars sitting lying in a bank your best bet is to enlist your local Family and Children services branch to help advocate as well. They have the deep pockets that are needed and it means that when some other well meaning person calls them they are already aware of you and are going to give you the benefit of the doubt. They are also the best source for getting the therapists that B and K need to help them become happy and socially productive adults. And trust me with kids like this if you haven’t had Social Services at the door it is a case of yet.

Good luck and I wish you all the best. It isn’t easy but one day you will be rewarded for what you do. Or you can do what I did and contact Dr. Phil. He never responded but at least I felt better for the attempt.

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[Anonymous]

Curlymoe – Just a quick note as I am on my way out the door to pick up B from school. We live in Canada, in a horrible province who hands out assistance based on IQ and not the child’s need. My son’s IQ is 7 points to high for us to get help. We were in a better province with all kinds of funding and programming, however, my husband is a RCMP Officer and we were moved against our will to this terrible province.

I do like your Dr. Phil idea hehehe. A few nights ago, I contacted W5 regarding the province’s inability to assist families like ours. I haven’t heard back yet and I am not hopeful that I will but it just felt good to get it out.

t is also very difficult to look at placing one of twins into a home. Even though they love to hate each other, I think it would really be detrimental to separate them like that.

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[Curlymoe115]

We are in Alberta and don’t I know about a province unwilling to help. However with boys you have a better chance of getting approved for a program to help with his behaviour. I know that in Ontario they had more educational resources but in Canada Childrens Services are required by law to help you. Being in Canada is a good thing especially if you do not currently have Social Services involvement. Go to your local paper and find out which person is involved with social issues. Get yourself interviewed about how you are being stymied from getting your children help because he is deemed to have too high an IQ. The fact that as an RCMP officer your family has been required to move here and they are refusing to get help for your two sons and you will have more mail and people stampeding to help you. It doesn’t seem fair in the land of free health care that you are at the bottom of the list because of a mental health issue but that is the way it is. The only way to put enough pressure to bear on the decision makers is to blackmail them into doing it. Good luck. We were interviewed after our oldest had Social Service status and the reporter could only use general information about us, but it did bring pressure to bear. My BIL was a RCMP officer until he retired 6 years ago. He was sent to 3 different provinces and many different posts. So I know what a nightmare that can seem.

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[Anonymous]

Curlymoe –

We were in Alberta before here and they had amazing programs. It took forever to get a doctor but the funding and the programming rocked. We are now in BC. I HATE BC! It is a terrible place to reside if you have a child suffering from mental health illnesses. What really irks me is that we told my husbands staffing officer that our boys were in a very unstable place just before the move and begged to stay anywhere in AB so we could keep our services and said officer told my husband “”if they would have known that we had kids like this then they never would have accepted him into depot as there is no place for a family like ours in their organization””. Furthermore, he told us that his kid had ADD and did just fine so ours should be fine. ARG! So frustrating!! So we are trying to make the best of our post with the crappy resources they have here, on the hopes that we can transfer back to AB or to the Yukon. Aside from NWT, they are the only province / territories that offer services for the boys. BC, MB, SK and NFL all work on a IQ basis. GRR! When we were in ON, they told us that if we needed respite services that we could sign our kids into foster care on the weekends. What is that?!?!

There are days like today that I really do hope W5 calls back!

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[Anonymous]

What I really don’t understand is how they can afford to pay foster care families to take care of my kids but can’t afford to give us the supports we need to take care of our kids!!!

Oh and I meant to mention that I have had to take on social services several times and thus far we have won everytime. The last time, they tried to tell us that we were doling out cruel and unusual punishment. Our boys had gotten into a fist fight on the bus and had been suspended from the bus for one day. My sons, in turn, told their teacher that they didn’t care as I would either let them stay home and play video games or I could just drive them.

So, my husband and I drove to the school and measured the distance on our tripometer. It was just over 3km each way. The next morning when the boys got ready for school, they demanded that we drive them. My husband and I told the boys that they had a perfectly good method of transportation to get them to and from school and through the choices that they made they were not allowed to use it today, thus, they would have to get themselves to school. We made sure they were bundled up appropriately for the weather and my husband and the boys ran to their school. My daughter and I took their book bags in the car and met them every few blocks with water. After school, we did the same thing to get them home. Now we may be mean, horrible people, but to us it was a natural consequence, plus they have not been suspended from a bus since so it was effective. However, the school secretary saw it as “cruel and unusual” punishment and called the police and social services on us.

The police officers agreed with us. Our sons were properly dressed for the weather, fed, hydrated, supervised and had regular breaks. Social services were a whole other ball game. The people at social services don’t seem to be accustomed to strong, well informed individuals holding their ground. I find that if you read up on their policies and procedures and know where you stand before entering into meetings with them, they will back down fairly quickly. Especially since it is their responsibility to protect the child and to work in the child’s best interest. That is a very broad spectrum, open for interpretation.

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