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ASD/ADHD loss of all control - Update #26

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#1 Winging it Mum

Posted 21 February 2017 - 07:33 AM

What do you do when it's like watching your child self destruct? DS10 last night with ASD, ADHD just lost the plot. I know he's lost it a few times but you know when there seems to be a certain point that he's gotten past & he was just not able to calm back down. Anything was a trigger and the screaming, yelling, crying, smashing & throwing things, running around and then laughing like a maniac.

This went on for hours. We just didn't know what to do, was about to call the hospital but I had no idea whether we could even get him there, but he did finally crash from sheer exhaustion.

Maybe this is a regular occurrence for some but for us this was taken to a new level last night.

He's been on Vyvanse for a month now & during the day this seems to be better than ritalin. He's on some Catapres in the morning & night for anxiety as well. However it seems like we have been slowly building up to this point and I'm at a lost what to do.

Mornings are always chaotic until his meds kick in, which seem to take 45mins to an hour.

I'll try & see whether I can email/speak to his paediatrician as we don't have an appointment there for another month.

But what do you do, what happens when a child gets too much to handle?

Edited by Winging it Mum, 13 April 2017 - 12:56 PM.

#2 xxyzed

Posted 21 February 2017 - 08:02 AM

We have a mental health crisis team at the local children hospital. You call a number and they give you advice over the phone when you don't know what to do. If necessary the team comes out to collect the child and take them to hospital for treatment. I've never used them as my child's meltdowns tend to be ferocious and damaging but very short lived so he would be asleep before they arrived. If the meltdown looked like it was going on I would call them. Your paediatrician could advise if a similar service is available in your area.

#3 ali-song

Posted 21 February 2017 - 08:19 AM

That's what my DS was like on Vyvanse. We just couldn't do it, so he's back on Concerta, weight gain worries and all.

#4 Winging it Mum

Posted 21 February 2017 - 08:58 AM

We trialled Concerta a year ago and that was terrible even during the day. And when he was off of it he was worse again.

During the day on Vyvanse he's doing well, it's just the night time.

Ritalin increases his anxiety so much but if he's on too small a dose he is still so hyper.

Trying to gain weight for him on any of these seems like an impossible task.

DH & I feel so defeated today, we are just done in. I thought maybe we'd found the right med, but I don't know anymore. When he gets like that, it's like he's not even him anymore.

it breaks your heart.

#5 xxyzed

Posted 21 February 2017 - 09:14 AM

It sounds like it's time for another medication change. We went through the stimulants with horrible side effects and worsened behaviour and have ended up on strattera. It's not perfect but makes his behaviour tone down enough for other therapies to have a chance.

#6 alwayshappy

Posted 21 February 2017 - 10:08 AM

Risperdal / Abilify and Lovan have performed miracles in our house. We don't have an ASD diagnosis, but suspect aspergers and possibly ADHD inattentive. Our son was extremely aggressive due to his anxiety, and these drugs have given our son back to us. Are they worth considering or at least discussing with your paediatrician?

#7 Winging it Mum

Posted 21 February 2017 - 10:45 AM

Paed is only back from overseas later today. I have sent the clinic an email & they said they will pass on, so I hope to have some sort of advice in the next couple of days.

I believe Riperadol was another option that was discussed if Vyvanse didn't work.

To top it all off, i just had a call from his psychologist to say he's leaving. We've only seen him twice, so we get another two sessions and then have to wait for a new psych to start. There just aren't words to describe the frustration I'm feeling with it all at the moment.

#8 Chapvane

Posted 21 February 2017 - 07:13 PM

My DS2 10yrs had a mega meltdown similar to your sons on Sat afternoon. It was so bad that I had to call my XH for back up.
Its absolutely heartbreaking to witness and my DS113 gets very distressed witnessing the episodes and tries to help DS2 and me.
I was in a cycle of despair over the weekend wondering what the future will be like for DS2.
DS2 was diagnosed with an anxiety disorder last year and recently ASD & ADHD. He is currently on Lovan which has made a huge difference with his moods, OCD behaviour, hyperactivity, concentration, particularly at school. Lovan has also meant less meltdowns but he still does have them especially when tired, under pressure and unwell. We trialled Vyvanse last year with dire consequences - he became extremely angry, out of control 24/7. We(XH & myself) are very reluctant to trial another stimulant. We are seeing his dev. paed in 2 weeks.

I started Lyprinol as per the Swinburne Uni study on Monday - may or may not have any effect - I am just clutching at straws ATM!!!!
I am in the same boat as you OP.
You are not alone!

#9 bubskitkat

Posted 21 February 2017 - 08:50 PM

My 7 year old is doing exactly the same. The pediatrician has prescribed him 2mg of Valium when he totally melts down. Hoping it works. He's on the lovan, riperdril & Vyvanse combo.

#10 IamzFeralz

Posted 22 February 2017 - 06:18 AM

I think you definitely should work with the paediatrician to try and combine the Vyvanse with something else.

My DS (who is your DS's twin remember?) is on dexamphetamine and strattera, plus catapres for night time.  The paed has him take the stattera  in the evening because first thing in the morning is hell on earth of us.  Stimulants by themselves made things both better and worse - better during the day but very difficult in the morning or evening.

A special hug to you and your family.  I get how hard it is.  I fantasize about going off on a cruise for a week, with adults and just rebuilding my reserves.

#11 Winging it Mum

Posted 22 February 2017 - 07:41 AM

Thank you everyone. It helps so much knowing that you're not alone.

I'm hoping to hear back from the paed in the next day or two as to what to try in the interim until our next appointment in a month.

Chapvane, I'd be interested to hear how you go. Someone had told me about the story so I did watch it & have asked the paed about that yesterday, just to make sure it won't interfere with anything else he's taking.

At times the future seems bright and then you think what the hell, how are they ever going to cope.

Thanks IamFerlaz, our boys do seem like twins! :)

It's so hard to accept they need medication but when you do, I never realised how difficult it is to get the right fit for each child. It certainly can be a long process.

Just thanks for the replies all, it just helps to be able to vent and get some advice and empathy to. It is very much appreciated.

#12 LisbethSalander

Posted 22 February 2017 - 12:22 PM

We have trialled a lot over the years. Respiredal was the worst. He literally destroyed a hotel room. There are no words for how that night went.

DS15 did ok on Lovan for a while and it is one of the more effective drugs without high risks of side effects out there, but after six months for DS it had outlived its usefulness. He is now on Mirtazipine. He doesnt like it. He is meant to be on it during the day as well as at night but he hates the grogginess. He does use diazepam as needed.

But honestly, as for those moments you are talking about, where there is no control and only aggression and violence, there is nothing to be done. Focus on keeping as calm as possible. I know when I get stressed when my DS is like that he feeds off it and things get worse. Its all about containment and safety. Ive been hurt, DS13 has been hurt, furniture gets thrown, things get broken. Its absolutely horrendous.

Then when DS has calmed, he is so distressed because he didnt want to do those things. He had no control. He was terrified and overwhelmed.

I can see these meltdowns coming from about a week before they do. I will mention to DS the signs that he is having and he will outright deny it. I know he knows but he must feel as though it is so out of his control and jsut doesnt want to go there. He cant hep it. What he needs from me is to know that I have his back and that I will keep him and everyone as safe as I can and I will be there to help him pick up the pieces. I have called hospital before during bad and lengthy episodes and been told the best they could do as he is a child is to sedate him and send him home and I can do that here.

As we all know in theory, the best help we can be for our kids is to be healthy and well ourselves. Make sure there is time somewhere in there for you to decompress so you can be at your best for your family.

#13 Chapvane

Posted 22 February 2017 - 04:09 PM

View PostWinging it Mum, on 22 February 2017 - 07:41 AM, said:

Thank you everyone. It helps so much knowing that you're not alone.

I'm hoping to hear back from the paed in the next day or two as to what to try in the interim until our next appointment in a month.

Chapvane, I'd be interested to hear how you go. Someone had told me about the story so I did watch it & have asked the paed about that yesterday, just to make sure it won't interfere with anything else he's taking.

At times the future seems bright and then you think what the hell, how are they ever going to cope.

Thanks IamFerlaz, our boys do seem like twins! :)

It's so hard to accept they need medication but when you do, I never realised how difficult it is to get the right fit for each child. It certainly can be a long process.

Just thanks for the replies all, it just helps to be able to vent and get some advice and empathy to. It is very much appreciated.
Yes, OP I will let you know how we go with Lyprinol  , apparently you have to give the Lyprinol 6 weeks for any benefits. We have tried high dose fish oils in the past with no benefits. You never know it may be different this time??
I have been interested to here PP experiences with medications. I think when a child has multiple diagnosis it makes it even harder to find the right meds.

#14 Chaotic Pogo

Posted 22 February 2017 - 05:45 PM


Edited by Cheerful Prancer, 22 February 2017 - 07:46 PM.

#15 bubskitkat

Posted 22 February 2017 - 05:48 PM

To get the right adhd medications we had to try 3 different ones. Tried Ritalin and dexamphetamine but he went totally crazy on both of those. They lasted half an hour.

The Vyvanse at least lasts all day.

When the medication appears to be working he will have a growth spurt and gain weight. This throws the right medication levels out.

It's a constant monitoring and assessing job.

The benefit had been that in the last yr he has learnt to talk and is now learning at school. The future is now brighter for him.

There is no magical pill out there that helps. A lot of trial and error. What works for one child may no work for another.

#16 marley*and*me

Posted 22 February 2017 - 07:35 PM

Oh the joys of medication changes.

ADHD DS who was put on Ritalin - great results at school once we worked out dosages and timings.  DS kept complaining about the taste of the tables, so he asked to go on LA ritalin....BIG mistake!  He was a nightmare - tipped over all the desks in his class, crawled around on the floor, refused to come out from under his desk - very interesting week.

So back on Ritalin.  Great for the rest of the year despite only putting on 1kg in 12 months and nosebleeds that could rival a scene from Dexter, but hey you take the good with the bad.

Now DS has started at a new school and he really hates to be different, so taking tablets at school is a bit of a sore point.  So we are trialing Concerta.  Seems fine at school, but his come down time at home is now really hard - 20min of homework can take upwards of 3 hours - and they get detention if homework is not done.  For dinner he is like a jack in the box - up and down constantly.  He is a right royal pain once it starts to wear off until he just crashes.

Oh the joys!!

Good luck though trying to find a combination that works for you family.

#17 Winging it Mum

Posted 23 February 2017 - 08:53 AM

Spoke to his paed yesterday arvo and we are going to slowly increase the catapres. Last night thank goodness he did go off to sleep much better. Homework however did take a loooong time.

I just never thought the medication path would be this complex, it's just a heartbreaking journey to get there at times. We thought with Ritalin that the result was initially amazing but the anxiety levels went through the roof. we are still trying to break his picking habit. He has had sores on his chin now for a year. We've tried gloves & fiddle toys but when he wants to do something, he'l just find a way to do it. Sores on his fingers that he constantly digs at and I notice now he's starting to break out with psoriasis on his elbows again. Damn, thought we'd gotten away with it this summer!

Anyway, thank you for all your thoughts, ideas and experiences. It helps to know you're not alone.

Hopefully we can get through ok now until his next appointment and things have settled better. It really was reaching breaking point for both myself & DH on Monday night let alone for DS.

LS.. thank you to for posting. I had been reading your posts about your DS being so ill recently & yet you still take time to offer some insight. you are amazing.

#18 IamzFeralz

Posted 23 February 2017 - 09:17 AM

View PostLisbethSalander, on 22 February 2017 - 12:22 PM, said:

But honestly, as for those moments you are talking about, where there is no control and only aggression and violence, there is nothing to be done. Focus on keeping as calm as possible. I know when I get stressed when my DS is like that he feeds off it and things get worse.

I think this is key.  My DS has actually said to me that when I start to get stressed and angry by his behaviour, it makes things worse for him.

I'm starting to look into mindfulness training for improved self regulation FOR ME.   Has anyone given it a go and does it help in the context of behavioural difficulties in special needs children?

#19 ednaboo

Posted 23 February 2017 - 09:31 AM

My ds (ADHD)  used to pick his skin on Ritalin - for him it was the skin around his nails, or biting his lips.  Vyvanse has been good for him, though he does get an emotional crash sometimes. I also find it takes about 45 - 60 minutes to take effect.

Did the paediatrician suggest medication for use on an as needed basis if it happens again?

I'm in Victoria and the CAMHS teams afaik are unlikely to respond in a timely manner in the event of a situation like this. You would likely be advised to take your child to the nearest ED for assessment.

#20 Winging it Mum

Posted 23 February 2017 - 10:22 AM

I am sure in hindsight when things spiral out of DS's control, that I or DH have not always dealt with the situation well.

I look back after and think how much better I/we could have handled it. Here's hoping if it happens again and sadly it probably will, that we deal better with the situation.

We've done mindfulness with DS & I lie there while he is doing it, but he's not always receptive to it. In the past I have done some hypnosis which can be quite calming & reassuring. I think maybe I need to look getting back into that as well.

#21 2bundles

Posted 28 February 2017 - 08:44 PM

My DS had outbursts like this when he was younger. He is 14 now and we haven't seen it for a couple of years.

I used to lie on top of him. The pressure seemed to soothe him. Eventually his body would release and he could be left for some quiet time or even tv time.

Having said that, we didn't experience the extreme violence some of the pp have, so perhaps it wouldn't work at that stage.

I can't even remember what meds he was on at the time. I think it was more about stress.

Edited by 2bundles, 28 February 2017 - 08:44 PM.

#22 Winging it Mum

Posted 21 March 2017 - 01:20 PM

Well after another serious outburst on the weekend, which was timely because we had a paed appointment today, we are to try risperidone in conjuction with the vyvanse in the morning and catapres at night.

So we will see if this helps. During the day he is doing so much better, it's been the best start to a school year that he has ever had so that has been a huge plus. But there is still a lot of anxiety and it looks like it all builds up and then he just loses the plot every so often.

It's hard coming to terms with medicating your child, but we don't see any other options, he just doesn't function without it and when he loses it, he becomes so violent.

So fingers crossed this combination helps, however if not, the paed has said there are others that we can try if it doesn't work well.

#23 IamzFeralz

Posted 21 March 2017 - 06:05 PM

Good luck Winging it Mum, I hope the Risperidone is a game changer for you.

Would be interested in your feedback!

#24 bubskitkat

Posted 28 March 2017 - 05:04 PM

Risperdone changed my sons life. It meant that he was calm enough to learn to speak and he also started sleepin through the night.

What works for one may not work for another. I found you have to trial combinations of drugs to get it right but when it's right they will have a growth spurt and the trailing starts again.

There is no one magical pill.

Good luck!

#25 Winging it Mum

Posted 13 April 2017 - 12:56 PM

Just an update of how we are travelling with changes to Vyvanse, Risperidone & Catapres.

So basically we've had a full term now at school using Vyvanse. This has been wonderful for DS10 & his ADHD. He is concentrating so much better, persisting with things rather than giving up. So for that I am so pleased. During the weekends we keep his meds the same & during the day there is a notable difference in what he can do.

Mornings are still so crazy & the Vyvanse does take about 50mins to kick in. Ripseridone seems to be helping with his anxiety but he can still be quite anxious at times, so I'm not sure we are quite there with that yet. His meltdowns can still happen but not to the same violent level yet. It's only been a few weeks on this med, so I hope it does help.

Downsides are that it does seem to wear off by the time he's collected from school so he is quite hyper & homework is a nightmare. His sleeping did get quite erratic & he couldn't settle & would go off trying to sleep in odd places. Eventually we put it up to 1.5 tablets and then recently after constant waking up around 2.30am, increased it to 2. It definitely helps him go to sleep but if he wakes up early he is HYPER as. Like this morning was 4.30 which is better than 2 or 3. And there are nights he does sleep through.

So I am cautiously optimistic that we are on the right track, I still feel we might not quite have the doses quite right but as far as school goes, I am so relieved and not ONE "bad" note in his diary about behaviour. He also has an amazing teacher this year - that has helped to!

As a side note I did go to the Autism SA conference last week & DH went to the Sue Larkey one. It was interesting, definitely a few adjustments that we can do as parents. My heart did break to hear a teen talk about his experience with living with ASD & how he felt about bullying & school in general. He was beautiful with his honesty and I hope that one day for him he will realise his dreams.I know I want that for my DS, as does any parent.

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