I need some emergency advice... ADHD/SID/Autism... violent outburst and what to do?

[Kay in Cal]

Wow, did that cover it all?

 

Those of you who have been on the board for years know some about my oldest ds... you may remember the window-kicking incident that left him with a huge scar on his leg at age 4. He's been variously diagnosed with ADHD and SID. He is also very very bright, which complicates things. I've personally thought that he has Aspergers issues, but never had a diagnosis. Part of the problem is that no professional has taken his issues very seriously. He's been taking Strattera for the past year and a half. It has really helped the intensity and frequency of his outbursts, though not eliminated them. He has also gained 50 pounds in that time, I think from the medication which makes him less active and hungry all the time.

 

We just moved away from the church and area he's know all his life. Visited grandparents, then been here less than a week now. He's been having more temper tantrums, more control issues, more outbursts (he frequently makes noises or motions, usually of Pokemon). Stress levels are high.

 

Today the whole family went to IKEA. He didn't want to go, and whined. After a few minutes whining became yelling, which became a major freak-out. He bit his dad. We set him in a chair to calm down, and I went to talk to him. He punched me, tore my glasses from my face and broke them in half, started scratching. My dh went to intervene, and he kicked my dh in the balls (sorry if that's TMI), dropping dh to the floor. That was the beginning of a twenty-minute slow removal from IKEA. He's too big and really strong to fight, we had to restrain him, then walk when he was calm enough, then he'd freak again, etc, etc. He went for his brother once, but mostly just us.

 

He was still freaking out when we got to the car, but then calmed down during the time it took us to start looking up child psychiatrists on the cell phone. We fed him, brought him home, and he's having quiet time. He's still wound up like a spring though.

 

We're new to the area, we don't have a doctor yet, not to mention a child psychiatrist. I'm so nervous now I just don't know what to do... he's not flipping out right NOW, and in the past it has been impossible to convince doctors that he's got issues. My dh knows there is something wrong, but thinks he just lacks self control. I really think it is beyond this. I'm worried about the weekend, with no doctor to talk to. We have crappy HMO insurance.

 

I'm really looking for advice from a parent who has BTDT. Anyone?

[TraceyS/FL]

:grouphug:

 

My DD rages, but not to that extreme.

 

I wish i knew someone to recommend - my SIL is/was going to P.A. school down there, but i'm not sure if she'd have any suggestions either. At this point, i'd think that should you feel the need for a doctor - a Children's Hospital ER is where you will need to go.

 

The OT that we are seeing specializes exclusively in Autistic/ADHD/SPD kids, but i stumbled on her so i'm not sure even how to go about finding someone that specializes like that.

 

So just lots more :grouphug:

 

(and, can you do a food log of what he had eaten the last few days? Although i have to say, IKEA freaks my middle one out, she'd be fine in the kids play area the whole time, but the last 2 times they have been full, so it's been horrid. Given her recent "failure" of the Auditory Processing testing - i'm going to start wtih the acoustics getting to her. BUT, we have had less raging since we have gone almost 100% off of processed foods - which just triggered to me that this week has been bad, and she was back eating breakfast sausage daily. UGH.)

 

So more :grouphug:

[MamaSheep]

How old is your child?

 

I've BTDT. I don't have time for a very long response just now (so sorry!) but will be back later with some book recommendations. It's so hard when the "pros" don't take you seriously (BTDT too). For now I'll just say you are not alone. It's gotten much MUCH better for us, but it has been a long, hard journey.

 

My quickie advice for this is to let everyone calm down and get a grip before you discuss it, and when you do discuss it maintain your calm as much as possible. With the melt-downs, they escalate less and end sooner if the adult in the situation is able to refrain from getting upset (HARD, I know, but it really does help), and if you don't try to reason with the child while he's in the throes of melt-down. Just keep everyone safe and wait for it to pass.

 

Most of the time these things are not "bad behavior", but a survival response triggered at an inopportune moment. The child has hit "fight, flight, or freeze", and either his system defaults to "fight" or he has been unsuccessful at being able to run away from the situation or freeze and let it pass (think deer in the headlights--if I don't move maybe it'll go away) and has had to resort to "fight". This isn't a rational response--which is obvious I know, but what I mean is that this survival response uses a "primitive" part of the brain (pros call it the reptile brain--eeew!) that is different from the part of the brain that uses logic and is able to think things through rationally. You're dealing with an instinctive response he may not be able to control. Trying to reason with him in that state will only escalate the situation. He probably won't be able to discuss it rationally until he's had a chance to rest and let his system reset.

 

It may seem logical to dish out a severe punishment for the severe behavior. I haven't found that punishments are particularly effective with this kind of thing. For us, it has been much more effective to treat the meltdowns not as "bad behavior" that pits him against me, but as a "problem" that he and I will work together to overcome. That puts both of us on the same "side" and instead of fighting me, he fights the problem. If that makes sense. In other words, instead of our goal being to mete out proper justice--or revenge (I know it HURTS when they bite and head butt and kick)--it has been more effective to make the goal be overcoming a challenge together.

 

Out of time, but will be back later.

[Wyndie]

That doesn't sound like lack of self control to me, sounds like a physical problem. I agree with the flight-fight-freeze.

 

I would also keep him off dairy. I know meds can have their own side effects but dairy is notorious for causing raging in children who are more suceptible and while you're trying to wait out the weekend, removing something that is often a culprit won't hurt. Then once you see a doc you can add it back in if it hasn't made a dent.

 

:grouphug: My children used to be of the "too scared to move" variety so meltdowns only happened at home. It does sound like a real physical problem and I hope you make it thru the weekend without further incident.

[Kay in Cal]

This is my 7yo ds... I totally agree that it isn't intentional or rational. We were actually pretty good (in retrospect) at maintaining a very calming tone and not losing our tempers as he was raging. The store was very crowded, and he was trying to overturn merchandise as well, so there was that fear he was going to hurt himself or someone other than us. I was so in the moment and focused on him that I was only peripherally aware of the stares. I think my dh is more on the same page than I thought, after talking to him for a while... he just doesn't know what we can do. I'm scared he won't "grow out of it" and we won't be able to get this under control before he is an adult.

[TeenagerMom]

I'm new here but I hope I can offer a little advice for you that will help. My 6 1/2 yr old DS has major sensory issues that result in meltdowns of that proportion on a regular basis. Fortunately he is still smaller than me.

 

There are a few things that have been effective for us to control and calm him during his meltdowns.

 

1. Restraint. I literally wrap my arms and legs completely around him and hold him very, very tightly and ride the meltdown out until he's completely exhausted himself.

 

2. Water. This has worked much quicker and more effectively for us than restraint. I either start wiping him down with a cold, wet washcloth, or when the meltdown is really bad, put him in a shower (sometimes fully clothed). The washcloth seems to take a few minutes whereas the shower is almost instantaneous. It snaps him right out and he almost appears to not to even realize that he was "gone."

 

As far as what triggers the meltdowns....Does you DS have a sensory diet? Has he ever been seen by an occupational therapist who deals with children with SID?

 

Here are a few things we do on a regular basis to help prevent overload.

 

1. Trampoline- either indoor or outdoor. When DS appears to be getting wound up I set a timer and have him jump for 5 minutes.

 

2. Squishing- I wrap him up in a sheet or blanket as tight as possible and he watches tv. I wrap my arms around him and squeeze for 10-20 second intervals.

 

3. Tickling- we have tickle wars. He loves them.

 

4. Beating his back- when he's having issues while waiting at dr appts, etc., I will sit him in my lap and have him lean forward and "drum" on his back.

 

5. We have a weighted "buddy" that he wears around his shoulders. I ordered it from a Therapy supply store.

 

6. Under Armor shirts have proven to be helpful for many kids w/SID, autism, etc. because they fit very snugly and are an all over compression.

 

I definitely recommend finding an OT who can get to working with him on some coping mechanisms and give you some support. :grouphug: I know it's been a hard day.

[MamaSheep]

I'm just in for another drive-by, and it looks like I'm not going to have time this evening for more, sorry. This time I have two book recommendations that might help in the long-term.

 

The Explosive Child

The Incredible 5-Point Scale

 

My son just turned twelve in April and is really doing well now. In fact, this past weekend we were visiting with relatives and he was playing with cousins, one of whom is a four-year-old with violent tendencies, and all of whom are really loud, which is a problem for ds. There were several clashes amongst the kids, including an episode in which the 4yo bit my ds hard enough to draw blood. My ds remained in control through the entire weekend. There were a few tears when he got bitten, but only the normal kind, not the raging, out of control meltdown kind. I was SO proud of him.

 

Seven was a really hard age for ds, though. That's when we finally decided to try medication for his anxiety issues (which helps!). He didn't really start turning the corner until he was about nine, though, and he still had "incidents" (though longer and longer between) up through age ten. Maybe one during early eleven, I can't recall exactly. I totally know what you mean, though, about worrying that they won't be in control as adults. When ds was younger I really thought he might have to be institutionalized by the time he was twelve because he'd be too big for me to wrestle to the ground.

 

You sound like you're doing great with your son. Hang in there! I'll check back again when I get the chance. Hugs for you! :grouphug:

[TraceyS/FL]

Not really wanting to hijack at all, but this is helpful info for me too.

 

My quickie advice for this is to let everyone calm down and get a grip before you discuss it, and when you do discuss it maintain your calm as much as possible. With the melt-downs, they escalate less and end sooner if the adult in the situation is able to refrain from getting upset (HARD, I know, but it really does help), and if you don't try to reason with the child while he's in the throes of melt-down. Just keep everyone safe and wait for it to pass.

i snipped, the whole thing should be quoted though....

 

I have worked soooo hard this year to NOT react. And I have noticed the more i don't, the more i'm rational and straightforward, the faster they end. Heck, the one friday was just 10 minutes.

 

2. Water. This has worked much quicker and more effectively for us than restraint. I either start wiping him down with a cold, wet washcloth, or when the meltdown is really bad, put him in a shower (sometimes fully clothed). The washcloth seems to take a few minutes whereas the shower is almost instantaneous. It snaps him right out and he almost appears to not to even realize that he was "gone."

 

I stare at the shower during them at times.... she retreats to the bathroom now instead of her room. I may have to try the washcloth. But the "snap, it's over" thing just still is so strange to me. It is like she doesn't realize how far she was gone....

 

I'm just in for another drive-by, and it looks like I'm not going to have time this evening for more, sorry. This time I have two book recommendations that might help in the long-term.

 

The Explosive Child

The Incredible 5-Point Scale

I'll have to see if my library has these.

 

Any ideas will help....

 

Kay - :grouphug: i'm glad to hear you and your DH are on the same page, and i hope you can find the outside help.

[chiguirre]

I've had one awful episode with my oldest. He became really agressive one afternoon and started throwing heavy rocks at me. I was alone with the kids and had to call the police for help getting him to a mental hospital. It was absolutely the worst day of parenting I've ever had (worse than dd's stay in NICU by a wide margin). Long story short, we didn't admit him but we did do some major revamping of his meds. It turned out that the "new and improved" versions of Risperdal can set off severe aggression in a small percentage of patients. Bummer!:glare: We eventually figured out what was going on by trial and error and now we're also trying Depakote which has been a huge success. I've never seen ds so happy and giggly. He's a completely different kid. One of the other side effects of the drugs which caused increased aggression was a surge in appetite and fast weight gain, so I'd definitely look at the Strattera carefully.

 

In the meantime, I'd avoid taking him out to busy places just to avoid the meltdown potential. I'd also limit the amount of time he's alone with just one adult if at all possible. I wouldn't have had to call the police (talk about embarrassing) if dh had been home. It will get better, but it might take some time to find a balance. In the middle of the chaos it's hard to see a way out, but it's there and you will get there eventually.

 

:grouphug:

[GraceinMD]

He's been taking Strattera for the past year and a half. It has really helped the intensity and frequency of his outbursts, though not eliminated them. He has also gained 50 pounds in that time, I think from the medication which makes him less active and hungry all the time.

 

 

Kay, I'm so sorry - just a little (ha) extra stress you didn't really need right now, after the g'parent/in-law trip and the move and the new job.

 

I have not BTDT, but from a medical POV, my first thought was about the dose of Strattera. If he's gained 50 lbs., could he need a higher dose? I work with a nurse who is ADHD and she describes being underdosed as feeling like a lamp that's not *quite* plugged in all the way - sort of staticky and out-of-sorts.

 

Of course, you'll have to establish with a doc in your new place (where are you, btw?), and a Children's ER might well be the place to go - or at least the place to call to get a recommendation.

 

From epocrates.com - here's the recommended dosing for a child (I don't know what he weighs) (I am, OF COURSE, not recommending that you change his dose yourself, but if you tell your new doc that he's gained about 25 kg, I would suspect they might want to readjust his meds, if that wasn't done at your last locale.) ("bid" = "twice a day")

 

[>6 yo, <70 kg] Start: 0.5 mg/kg PO qam x3 days, then incr. to 1.2 mg/kg PO qam; Max: 1.4 mg/kg/day; Info: requires slower titration if pt is poor CYP2D6 metabolizer or on strong CYP2D6 inhibitor (see Drug Interactions); doses >0.5 mg/kg/day may be div bid; periodically reassess need for tx during maintenance

 

[>6 yo, >70 kg] Start: 40 mg PO qam x3 days, then incr. to 80 mg PO qam, may incr. to 100 mg/day after 2-4wk if needed; Max: 100 mg/day; Info: requires slower titration if pt on strong CYP2D6 inhibitor (see Drug Interactions); doses >40 mg/day may be div bid; periodically reassess need for tx during maintenance

 

Hope you can get in to see someone soon!

[newbie]

I pm'ed you w/psych info for San Diego. :grouphug::grouphug:

 

There is a site for resources in area, site is sd-autism.org, I was just on there today looking up info for my friend whose boy has autism and lives in SD. This should help you w/lots of info in area.

[Alessandra]

I haven't experienced anything like what you have, but I have a friend who is in a similar situation & she swears by RDI

http://www.rdiconnect.com/

[Tree House Academy]

This is my 7yo ds... I totally agree that it isn't intentional or rational. We were actually pretty good (in retrospect) at maintaining a very calming tone and not losing our tempers as he was raging. The store was very crowded, and he was trying to overturn merchandise as well, so there was that fear he was going to hurt himself or someone other than us. I was so in the moment and focused on him that I was only peripherally aware of the stares. I think my dh is more on the same page than I thought, after talking to him for a while... he just doesn't know what we can do. I'm scared he won't "grow out of it" and we won't be able to get this under control before he is an adult.

 

 

I have *that* child. Only he was 5 when he kicked dh in the privates in a store. :( My son is now 10 and he is a very ANGRY child. His temper tantrums are getting harder and harder to handle and yesterday, he pickled up his breakfast fork and threatened to stab his brother with it. He also has ADHD, but the biggest issue is the ANGER.

 

We too are working on how to help him. Severe punishment is not the key - but teaching him where to direct that anger and how to stop it is. I got some great advice from MelissaL and Pamela in TX on the thread titled "s/o...all you non-spankers" Please go there and read toward the end if you are interested in the actual incident and all that happened as well as the advice I got.

 

We are seeking therapy for him (again) as he is getting too old for physical punishment and this is just not a good combination anyway with his current anger issues.

 

Best of luck and hugs to you. I feel ya...I have been there!:grouphug:

[LizzyBee]

One of my co-workers videotaped her son and took the video to the doctor. This was for an autism eval, and the dr was very glad for the video, because her son has some unusual behaviors that he didn't do in the dr's office. Maybe if you or dh could videotape your son during a rage, it would give the dr a better picture of how severe his rages are.

 

I'm sorry you are dealing with this. :grouphug:

[elizam]

I have *that* child. Only he was 5 when he kicked dh in the privates in a store. :( My son is now 10 and he is a very ANGRY child. His temper tantrums are getting harder and harder to handle and yesterday, he pickled up his breakfast fork and threatened to stab his brother with it. He also has ADHD, but the biggest issue is the ANGER.

 

We too are working on how to help him. Severe punishment is not the key - but teaching him where to direct that anger and how to stop it is. I got some great advice from MelissaL and Pamela in TX on the thread titled "s/o...all you non-spankers" Please go there and read toward the end if you are interested in the actual incident and all that happened as well as the advice I got.

 

We are seeking therapy for him (again) as he is getting too old for physical punishment and this is just not a good combination anyway with his current anger issues.

 

Best of luck and hugs to you. I feel ya...I have been there!:grouphug:

 

I have that child, too, only now he is 16 and the stakes are higher. If you want to know just how much higher, feel free to PM me.

 

I had a counselor suggest getting a psych eval from a psychiatrist, to determine if bipolar disorder might be the problem. It runs in our family...yep, that is the problem!

 

This book is very respected: The Bipolar Child.

 

Also this website is the best I've found: http://www.bpkids.org

 

I know some people have trouble believing kids can have bipolar, but I understand so much better now!

 

Stimulants can make it worse...and ADHD is often NOT ADHD...which is often found out when the child doesn't do well on stimulants. But they frequently misdiagnose it as ADHD.

[Danestress]

I haven't BTDT so I have no advice, but I am sure this incident was very distressing for you and for him. I hope he's calm today and that you found some help.

 

Dana

[EKS]

Yes--Kay, you and your family have been in my thoughts today. I hope things are going better.

[Dobela]

My brother has always had outbursts like that with his autism/aspergers. As an adult now he is finally managing them well with a combination of things. One is a combo of meds-one for depression, another as a mood stabilizer. He also has to seriously watch his diet. While not diabetic, he can have diabetic type episodes where he is just not aware and in control of his actions. By removing his trigger foods (caffiene, sugar, gluten) he is much more level as well, so much so the dr is considering lowering the dose of the mood stabilizer. These all come from a psychiatrist though. His regular md would never prescribe anything to help the mood problems nor would he make suggestions for diet changes.

[Kay in Cal]

Thanks for all the advice and support! I didn't take time to post yesterday, but it went fairly well.

 

Ds hasn't had another major rage, but a few outbursts here and there. I'm beat this morning because I spent several hours with him in the middle of the night because he would not sleep alone, and was building up to an event. I laid with him on the couch and did some massage and tickling... he eventually calmed and slept. I'm going to get cracking on finding a doctor on Monday. Of course, I'm supposed to be starting work this week, at least partially. I go back to my regular full-time schedule starting next weekend... good thing my life is flexible.

 

Anyhow, I am definately reading all the advice and recommendations.

 

Grace: He just had a physical about a month ago, and the doctor almost upped his meds. At the time, he had been pretty stable, so she decided not to. Then the move started! I'm going to follow up on that. Of course, I'd really like to find something that didn't cause him to gain weight. We can't buy clothes for him any more, ugh.

 

Take care all, and if you have any more advice, please sent it my way!

[Ottakee]

A few thoughts. Strattera can also CAUSE the rages and behavioral outbursts, esp. if the child already has a mood disorder underlying.

 

We had that here with my now 12dd. Strattera was TERRIBLE. She has a mild bipolar nad is now doing well on Lamictal and Risperdal. My 21 year old son (these 2 aren't bio related) became verbally aggressive, argumentative, etc. on Strattera when we had NEVER seen those behaviors before---he was on it for ADD.

 

I would look into the bipolar thing. It may or may not fit but if it does, Strattera is usually not indicated for use. There are other meds that help with rages, outbursts, etc. that work well for kids on the autistic spectrum as well.

 

I would seek out a TOP NOTCH pediatric psychiatrist ASAP. The wait can be months but try to get on a waiting list, let them know he is become violent, etc. That might get you in earlier.

 

There are so many meds out there as well that unless the Strattera was the perfect med for your son, I would keep searching due to the weight gain. Make sure the doctor knows about any other meds you have tried, doses, etc. and his weight gain. Did they do a prolactin level, blood sugar test, thyroid, etc. as well? Those are pretty standard with the meds---esp. if he has the weight gain.

[TravelingChris]

Is there a specific problem why he can't be on a stimulant for the ADHD? They generally work much better for it and weight gain is not an issue. I have 2 with ADHD and for my older, at around 9 or so, his rages became horrible. WE worked with a pediatric development specialist and with a psychologist who had ADHD himself. The MD tweaked his medicines so we had the best affect (both stimulant and clonidine) and the psychologist could really communicate with him in a way to make him understand that acting out was simply not acceptable. But he needed the medication changes in order to be able to have some chance to control his impulses.

 

My daughter has had severe rage reaction to a Migraine medication and also to an abrupt discontinuation of a SSNRI. Our more sensitive kids are more apt to have medication issues. I would not stay with any doctor who didn't believe us as the parents about our kids problems. Fortunately we didn't have those issues excepts once and I didn't go back to that doctor. If you can, have both of you go to the doctor with your son. I find that even a somewhat skeptical doctor is more likely to believe if Dad is there and backing Mom up.

[Lisa in Jax]

Are you willing to give it a shot? It's hard, but it can make such a difference!

 

Four years ago, we tried ADHD meds for my son, but the stimulants made him rage and have bigger issues.

 

Once we took him off the stimulant meds and tried the diet, my son's rages and behavior problems virtually disappeared. Kids "on the spectrum" can really benefit from removing gluten and casein. Kids with "simple" adhd also benefit.

 

HIH,

 

Lisa

[GraceinMD]

took the video to the doctor.

 

This is a phenomenal idea! - and not just for pediatric / spectrum behaviors.

[Kay in Cal]

Send me a link, sister! It would probably be easier now that I'm not vegetarian any longer...

[Spy Car]

I have no advice Kay, but I want to send you my very best wishes :grouphug:

 

Bill

[Lovedtodeath]

I haven't read all ofthe responses yet, but your sitch with no one taking it seriously and dealing with rages is spot on with DD. I can't wait to read all of the replies and I am so glad that you posted.:grouphug:

[Lisa in Jax]

Kay,

 

Try these:

http://www.tacanow.org

http://www.gfcfdiet.com

 

Try this book, too:

http://www.amazon.com/Kid-Friendly-ADHD-Autism-Cookbook-Gluten-Free/dp/1592332234

 

HIH,

 

Lisa

[cillakat]

I'm just in for another drive-by, and it looks like I'm not going to have time this evening for more, sorry. This time I have two book recommendations that might help in the long-term.

 

The Explosive Child

The Incredible 5-Point Scale

 

 

Second the Explosive Child. Life changing for us. I haven't heard of the other book but will definitely check it out from the library.

 

I'd also have a look at _Depression Free Naturally_ It's not about depression only but about a whole spectrum of 'mental health' issues and their orthomolecular treatments. I'm a big fan of better living through chemistry (we're all on meds here) but we also do a lot of alternative stuff - esp me. While the adderall keeps me functional in one way, the orthomolecular stuff (amino acids, vitamins, minerals, efa's) keep me *same*. I have dealt with major mood stability issues (mostly wrt irritability), debilitating anxiety and since I was very young, depression. Orthomolecular has really smoothed out all of those rough spots. Adderall deals with the attention/motivation/get it done issues.

 

Wishing you all the best. Carry a cell phone with a video camera on it. Get video (even if you have to have someone else video it on your phone). His hcps need to see what you're seeing.

 

hugs,

K