Tamarah

New Member
Hello Everyone,
I am new to Forums and Support Groups, infact this is my very first post to a forum ever :) I did a lot of reading before joining and I think this is a very helpful place.

My difficult child is 13. He has Tourette's + (Plus), ODD, ADHD, Learning Disability (LD),and a previous seizure disorder where he was having mulifocal partial complex seizures till he was around 8 years old. Although he has never been diagnosed with anxiety disorder he is very anxious.
He feels that the only person who loves him is me even though he is surrounded by love.
He is mostly a very genuine, loyal, empathetic loving person.
He has been in and out of school his whole life because he would act out or simply refuse to engage in any type of learning at school. I have homeschooled him off and on and fund him to be very agreeable and eagre to learn - this is not the case at school.
Over the course of several years he has been on a myriad of medications and been involved with numerous children's services which have all failed. The problem cited by all who have been involved has been that my difficult child does not believe that he has any issues and that he is perfectly normal and therefor can not even describe to anyone why he is in whoever's office or whatever program.

My "current" issue is that my difficult child is cutting himself when he is overwhelmed with feelings of sadness or rejection. Those feelings usually come after a rage attack; sometimes within hours and sometimes its the next day. He says that he feels as if he wants to kill himself but that he does not want to kill himself and that the cutting makes the stress go away.

He has been brought to the ER twice in the last 3 months and both times he asked to go but then refused and continued to harm himself right in front of me and so I had to call Emergency Services to assist.

When he is brought to the ER he then goes back into a worse rage than previous and has been restrained and given cogentin and haladol IM; which settles him. The ER and Child psychiatrist on call do not believe that he needs immediate intervention and he is sent home with me.

He has a regular Child Psychiatrist who is wonderful and very open to suggestions that I make as we have been at this for nearly 9 years.

Im not sure that I have any one particular question, what I am looking for is suggestions or other's experiences which I might be able to explore to help my difficult child; not just around cutting, but coping skills, medications, behaviour modification, etc.

Here's Hoping.
 

smallworld

Moderator
Welcome. I'm glad you found us, but sorry you needed to.

Honestly, I'm surprised you haven't gotten more help when your son is seeing a child psychiatrist and you've been to the ER twice. Feelings of wanting to die and cutting are serious issues and need immediate treatment.

Sorry for all the questions, but your answers will help us help you.

How often is he seeing the psychiatrist? How often are you in touch with the psychiatrist?
Is he in therapy?
What doses of the medications is he taking? How long has he been on each one?
Has he behavior worsened since the start of Trazadone?
Are you in the US or another country?

Again, welcome. I hope we can point you in the right direction.
 

klmno

Active Member
Welcome! I agree with Smallworld- I don't know why people haven't done more to try to help your son, but it sounds like you might need to keep trying different professionals. When my son started acting differently (dangerous to himself mostly but it could have caused injury to others- like when he'd run out in front of traffic), I went to six different professionals asking if they thought my son was a danger to himself or others and asking what I should do. It took a lot of perserverance before the slow process of help started. I hope you keep pursuing and don't give up.

It's my understanding that cutting can deteriorate a child very quickly. You must feel at wits end right now- many people here have felt the same. You probably can't post anything that would shock anyone and there is a lot of support and experience here to lean on in rough times. Don't give up-
 
F

flutterbee

Guest
I wanted to offer my welcome. :flowers: You've found a very supportive group here.

I'm surprised, too, by the lack of urgency by the professionals over the cutting. I know that here it's a fast track to a psychiatric hospital bed. I'd say it's time to stop knocking on doors and time to start banging them down.

Oh, and my difficult child doesn't have any issues either. There is nothing wrong with her. Just ask her. Except that she's miserable. Her response to that? "So! I'm not going to die!" :faint: And nothing helps either (tongue in cheek). It's incredibly difficult and frustrating when your child is so treatment resistant. She has very circular reasoning. Sometimes I feel like it would be more productive to pound my head against a brick wall. At least then I wouldn't be conscious. :tongue:

Again, welcome. You'll find a lot of support and resources here.
 

Marguerite

Active Member
Welcome, Tamarah. From your spelling, I presume you're in the US.

The others are correct, with all the intervention he is already getting, I really don't know what more you could have in place. It's not easy, especially with Tourette's. Is there a local support network he could maybe contact? Perhaps if he could talk to other Tourette's teens he might realise he's not the only kid to have these problems or these feelings.

As for separate diagnoses for everything - sometimes it's just all part of the one global complex. For example, difficult child 3 has a diagnosis of autism plus ADHD. However, he would also qualify as ODD, Obsessive Compulsive Disorder (OCD), Sensory Integration Disorder (SID), extreme anxiety, school phobia/school avoidance, hypermobility (although that has at least partly been officially diagnosed) and hyperlexia.
Apart from maybe the hypermobility, it's all part of the whole package that is difficult child 3. All one disability, all connected. And even the hypermobility could be connected - we keep meeting kids with similar constellations of symptoms.

Frankly, from a parental point of view with our kids - we treat what we see and have to deal with. We can't wait for official labels, we just roll up our sleeves, get stuck in and deal with it.

For example, with difficult child 3, when he was very little and not talking - I developed my own way of communicating with him and teaching him new words. At one point I even had a speech therapist tell me not to let him read - as I said to her, "How do I stop him?"
And as it turned out, what I did happened to be just right, it met his needs and was a key to him communicating. Normally they recommend breaking complex tasks into their simpler component parts - but with difficult child 3 at that time, he needed to be given the whole complex interconnection of communication - the sound of a word, the look of a word, the context of a word (from the film of it being used, or us acting out the meaning of the word).

It is very important to have faith in yourself as a parent, to trust your instincts. So if you feel your son is struggling with anxiety - then do what you feel he needs, in terms of reassurance or other strategies. Teach him meditation, deep breathing, any visualisation technique that he can use to help calm himself.

difficult child 3 was taught to deep-breathe by his psychologist. Because he is obsessed with numbers, she told him to breathe in for six seconds then breathe out for six seconds. He had to put his hands on his diaphragm and feel it moving in and out; watch himself in the mirror to make sure his shoulders weren't rising and falling also. SHe walked him through tensing and relaxing his muscles, and how different a relaxed muscle feels form a tense one.

There are many relaxation exercises, lots of visualisations you can use to help your child. If he trusts you, then you might be the best person to involve him in this.

I've used relaxation/visualisation to help me deal with physical pain. If you ever did natural childbirth classes, you probably already have the basics. One thing I found helpful, which is also useful in anxiety - visualisation which is personally chosen by you (or in this case, your son).
In my case, I visualise myself in a rainforest near the sea. It works well for me because it is a real place. I have been there, I made a point of trying to remember as much about the place as I could. Recently I had a chance to re-visit the place and this time I took photos to help reinforce my memory of the place. In a good visualisation, you need to focus on not just the sight of the place but how it sounds, how it feels to the touch and how it smells. So a visualisation of a beach, for example - you close your eyes and imagine yourself lying on your towel face down. The sun is warm on your back, you can feel the beginning of the tingle that says you are tanning. Underneath, the warmth of the sand seeps through into your skin right to the bones. In the distance you can hear a seagull squawk. The waves sloosh rhythmically up and down the beach, in slow, calm tempo. You can smell the salt and the faint fishy smell of wet seaweed. And all the time, you breathe slowly, in time to the wash of the waves, in and out. You feel the air move into your nose and down into your lungs, you feel the oxygen spread through your body and you feel the breath come back out, taking the carbon dioxide out of your body. Again as you breathe in, you feel the air reach deep inside, as deep as you can get it with each slow breath.

Over time, with repeat practice, this can be very powerful as a tool to help calm oneself. To begin learning this, it is good to practice this when you DON'T need it, at a time when you are already relaxed.

For example, when I was using this for pain relief I had my own very strong visualisation specifically modified to help me focus my thoughts on easing pain. But to strengthen it further, I would practice the visualisation immediately after taking strong painkillers. That way, just as the visualisation became most vivid and the relaxation was most effective, the pills would also be kicking in and the pain actually would be easing chemically. This produced a conditioned response that connected, in my mind, the pain relief from the drugs, with the visualisation. The result was a much more effective visualisation which still works really well, even if I haven't taken the painkillers.

The thing with this - you customise it to your own needs. Or for your son, you talk to him, ask him to think of a place where he felt happy and relaxed. It can be a real place or it can be a fantasy place which is similar to a real place. For example, in my rainforest there is a large capsule thing, like a giant Faberge egg that I can actually open and go inside. Once inside, it is different again (like Dr Who's Tardis) and is like a room. In each mental frame, I could find something that matches the image. Together, it's completely unreal. But the individual pieces of the sequence can be made more effective by putting together my photos of the rainforest by the sea, holding a small cloisonne egg and remembering the formal living room in my aunt's house (even to the smell of the home-made furniture polish - a mix of turpentine, honey from the beeswax and lavender).

Heather, I know this is suddenly off-topic, but something about your daughter 'clicks' with mine. Have you introduced her to 'knitting' chain mail? Anything crafty can be very relaxing (my girl loves fiddly, meticulous detail as well as anything different) and once you've got it organised with your bag of bits beside you and your pliers and wirecutters handy, chain mail knitting or weaving can be relaxing. I would see husband and his daughter sitting side by side, each working on their own piece of single mail.

There can be many ways to relax - easy child 2/difficult child 2 has found craft work, puzzles, tapestry, sewing - it all helps her reduce her (at times extreme) anxiety. Her cutting was partly anxiety, and a lot of it due to emotions just overwhelming her. She is still very emotional, very anxious at times, but no longer cuts. Thank goodness!

Marg
 

BusynMember

Well-Known Member
I quadruple that you really need a new evaluation for your son. Right now he has a laundry list of diagnosis. that don't really mean anything. I'm thinking that perhaps he has a mood disorder (LOTS of cutting with that) or perhaps something missed. I highly recommend a neuropsychologist evaluation because the professionals do intensive testing on every level, psychiatric and neurological and often find things that even psychiatrists miss. Our psychiatrist missed our son's main issue. I am not convinced he sounds like he has a Pervasive Developmental Disorder (PDD)--my son is on the spectrum--but it's always good to check that out. To me, as a layperson, sounds like he COULD have a mood disorders which has been given 100 other diagnosis. and probably has been treated with ADHD stims, which will not help a mood disorder one bit. I could be off. That's why the neuropsychologist. I'm also confused as to whether or not you are in the US. That's kind of important as the interventions and even diagnoses are different in different countries. I know that certain countries will not diagnose early onset bipolar. If you say which country you are from (or state) somebody closer to you can maybe recommend which sort of help you can get that you maybe haven'[t tried yet. However, anywhere in the US, you can find neuropsychologist. They are hiding in Univeristy and Children's Hospitals. My daughter cut and it is a complicated issue--cutting can become addictive.
Welcome here.
 

Tamarah

New Member
I wanted to thank you all for your kind words of encouragment and support. I am thankful for all that you have shared with me. I have found myself gaining some strength overnight thinking about what I have read, especially when klmno said they visited 6 professionals!
I will try and give some more information here based on the questions and feedback.
I live in Ontario, Canada (eh) :)

Midwestmom, I agree that he has been laundry listed as far as diagnostics have gone and I agree it's time for a new assessment. He has had a psycho-educational one two years ago, but nothing since. You sound like you have experience with mood disorders, would you happen to have a particular mood disorder in mind that I could look up?

difficult child was originally diagnosed with a seizure disorder when he was very young; maybe 2ish. Then the ADHD when he was 4ish: he was given stimulants. He then developed tics around 3 weeks into treatment. Speaking of tics, however, when he was learning how to speak at the normal developmental age and stage, he would repeat the sound of hard letters at the end of words which ended that way; truck for example would sound like truck ck ck ck. So I dont know what actually came first.

When he was around 4 the rage attacks began. So he was then put on clonazepam and probably clonapine (I believe).
His behavior has been Dr.Jekyll / Mr.Hyde like since he was around 3; not deviant though...very loving/out of control anger with no recollection of what had happened and I always figured that was reason for the ADHD diagnosis. Honestly, I'm not sure I buy the ADHD features of his issues.
The ODD stemed from the learning disability because he was refusing to do school work. I think the ODD has actually been learned as a coping mechanism so that he didnt have to admit he had a learning problem and so that he didn't appear "dumb" to his peers for not being able to do the school work. The reason I think this is because he rarely is defiant unless he's made to feel "dumb". Nonetheless, he was also labelled ODD.

So from the time he was around 2 he has been seen by neurologists for the seizures and the psychiatrist at least a few times a year. He has been in behavior modification for impulsivity (which obviously hasnt worked), he's been in art-therapy, I have had intensive services come into my home. He has has one-on-one therapy and we have had family therapy. All of the services have failed to yield any measurable results, and I am told it is because my son won't "buy into" the services because he feels he doesn't have any problems (by the way wyntrsgrace, I am glad to know that I am not alone with their difficult child not thinking anything is wrong).
He's 13 now and really it feels like we have been running in the hamster ball for years; we can go different places with the treatments and experiences but can never get out the ball and breathe!

Smallworld, you had asked if the behavior worsened since beginning trazadone, and I had never thought about it untill now. Yes, it has. It has been become more intense and the cutting began after the trazadone. I will be taking this up with the psychiatrist immediatly. Can you tell me what the relation is in your experience? It would be good to have that information to use.
His medications are Risperedal 2mg;once daily in the am
Trazadone 50mg; at bedtime
Now, he takes the trazadone ebcause he kicks and gets up and talks and sweats in his sleep which he has done since he was about 2 and has taken melatonin for several yaers, but the trazadone has only been introduced in the last 6 months because the kicking is preventing him from sleeping despite him taking melatonin.

Marguerite thank you for sharing your experiences with relaxation and visualization; we have not used that in years and it might just be time to revisit that now that he's a little older and able to participate better.

Again, I am very thankful and feel blessed to have found this group, thank you all.
 

Tamarah

New Member
:confused: I sent a reply to all of the helpful support you have written to me however it doesnt appear to have posted. Does it take a certain amount of time for posts to go through? I may have to start on a rewrite! Stay tuned.
 

smallworld

Moderator
Since you're a new member, your posts will have to be approved by a moderator until you've posted a certain number. I believe your last two posts have been approved and are now visible.
 

BusynMember

Well-Known Member
Actually, a mood disorder is a mood disorder. There is a new diagnosis for all mood disorders, including the other common symptoms that tag along with mood problems--anxiety and Obsessive Compulsive Disorder (OCD) and sometimes mania--it is called Mood Disorder Spectrum. More than any other diagnosis, other than a child abusing drugs, you see self-harm with this problem. It is also very common in kids who have been sexually abused, but that isn't the only time it happens. Cutting becomes addictive, hard to quit and takes a special sort of therapy. When my daughter cut she told me she did it "To relieve the stress." She quit on her own, but my ex-best friend (may she rest in peace) also was a bad cutter and she called it "addictive." She had a mood disorder (as does my daugher), and both were also sexually assaulted at one time. My friend went to years of therapy for all her issues, including the cutting, and ending up the one who everyone went to for their problems. She really turned her life around and no longer cut herself, had her mood disorder controlled with medications, and had too many friends to count. Getting to the cause of the cutting can be complicated.

Good luck :)

http://www.bpkids.org
 

smallworld

Moderator
I'm wondering when he was last treated for seizures and how you know the seizures are gone. The fact that he doesn't remember his rages and kicks and sweats in his sleep makes me think he's still experiencing seizures, at least partial ones. Has he seen a neuro recently?

Both atypical antipsychotics like Risperdal and antidepressants like Trazadone can lower the seizure threshold, which may result in more seizures. Furthermore, antidepressants like Trazadone can increase rage episodes and suicidal ideation in children, particularly if they suffer from mood disorders like bipolar. That's why I asked about his behavior since Trazadone.

I agree that he needs further assessment, both from a neurological and psychiatric standpoint.
 
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klmno

Active Member
I wonder that, too. I think more neuropsychologist testing is in order, but if it's affordable and feasible, it appears that an multi-disciplanary evaluation, with a child psychiatrist, neuro-psychologist, and neurologist would be most beneficial after those results are compiled.
 
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