Hyper meltdown help

amother

Sat, Oct 25 2014, 10:58 pm

My 4-year-old daughter is showing many signs of possible Asperger's Syndrome. She also definitely has sensory processing disorder, though we're waiting for the official dx on that.

I know the ideal would be to prevent meltdown situations by removing her from overwhelming situations earlier, avoiding sugar and food coloring, etc. We are successful with this much of the time. But sometimes (too often) it happens anyway and that's what I'm asking about here. It tends to pass eventually but usually not before I lose it embarrassed

Example: Family simcha, noisy, crowded, junk food (I put limits but couldn't make her not eat any, she's only 4 and already thinks I deprive her because I let her have SEVERAL noshes while other kids keep going back for more without limits! &%$# the other parents!). DD holds it together in public (and in school, etc. It all comes out at home) and then we get back and she runs around in circles, flapping her arms, and making animal-like squawking noises. She seems very happy, big smiles, but totally out of it. She needs to get ready for bed and use the bathroom, plus her excessive noise is giving everyone headaches and her running around is bound to get someone or something hurt. In addition her 2-year-old sibling idolizes her and copies everything she does and this is a very poor role model. But most of all I feel like she's lost somewhere and needs help and I don't know how to give it to her. I couldn't get anywhere near her, she would yell and swat/kick me away. When she finally let me hold her I thought maybe I could calm her with squeezing or massaging but didn't have a chance, within less than a minute she screamed "let go" and started thrashing again. At one point DH managed to distract/engage her, she sat on his lap talking about something for a few minutes, but the second they finished that discussion instead of being calmer she picked right up where she left off with the running and flailing and screeching. If anyone tries to pick her up bodily she gets increasingly hysterical upset, but these things rarely end without a lot of crying eventually anyway...

I just feel so helpless! I know all kinds of supposedly-calming techniques but none that will work on a kid who won't stop running and squealing and flapping! I want to rescue my poor baby from whatever is going on in her head and also rescue the rest of us - I'm a little sensory myself and the noises she makes are super triggering for me. I usually end up yelling which I really do not want to do at all but sometimes it is enough to get her attention and shut her up and move her on to the next thing at least temporarily. But I don't think that's good for her in the long run, I just can't think of what else to do because from past experience she can go on either forever or until she hurts herself.

Help!

amother

Sat, Oct 25 2014, 10:59 pm

Note: I am open to discussion of long-term interventions but we are already working on some things; right now what I want to know is what do other parents in this situation do in the actual moment when all else fails and the breakdown actually happens.

imasinger

Sat, Oct 25 2014, 11:11 pm

Hugs, it can be so draining!

I find that an ounce of prevention is worth a pound of cure.

Since she may respond better to visuals than auditory communication, you could start off with a picture chart of what will happen. Ride to simcha, details of simcha, and expected behavior. Ride home. Quiet time, pajamas, bed. Whatever it is. Pull it out periodically, review what is happening, and what comes next.

Any chance you or DH could remove her from a simcha after a short time and take her for an outing that will calm her?

If not, can you bring two cars, and take her home by herself, giving her some favorite music to listen to in the car?

Or at least, one of you take her to do something calming and desirable the second you get home?

By the time she is stimming, running, and screaming, it's already too late.

Diagnosis and meds can potentially help, down the line. But these strategies may make the difference now.

Bruria

Sun, Oct 26 2014, 12:27 am

The first step would be to take her to a psychologist to get her officially evaluated and from there you could see all your options and how to go from there.
ABA therapy could help her a lot, I've seen many kids benefit from it.
The most important things is to have lots of patience, she does not disturb anyone on purpose.
It could be helpful if you printed out a sequence of things she has to do with pictures. Something that showed a picture of a bathroom, brushing teeth, getting in pj's and going to bed
The TEACHH method is also interesting.

amother

Sun, Oct 26 2014, 12:41 am

Maybe trying to restrain her while she is having a meltdown iis not such a good idea. Some kids with sensory issues don't like being held while they are having this need to move around. Hugs can be calming, but sometimes not during a meltdown.

amother

Sun, Oct 26 2014, 12:59 am

OP I've been there so I know how frustrating and consuming this can be. So lots of hugs.
I have a 6 year old son diagnosed with sensory processing, anxiety, OCD and a myriad of other things. He constantly had meltdowns and was set off by the slightest thing.

We did 2 things that really helped a lot:
1-we put him on a gluten free diet
2-we did occupational therapy for about 1.5 years and that helped a lot with sensory issues and anxiety.

But he still had occasional meltdowns...

Then a few weeks ago someone told me about PANDAS. It's a pediatric autoimmune syndrome that makes kids go bonkers. Basically the body produces strep antibodies that attack the brain and causes neurological symptoms like irritability and mood swings. It's usually associated with a strep infection or lyme disease.

I had my pediatrician do the blood work and my son tested positive. So now he's on antibiotics and this is supposed to help. I've spoken to other mothers whose children had pandas and they said the antibiotics worked wonders.

We've just started using antibiotics so I haven't seen any results, but I think it is worth it to test for PANDAS.

Good luck.

FranticFrummie

Sun, Oct 26 2014, 4:05 am

DD was a lot like this until she got her tonsils out at age 5 1/2. That got rid of the systemic strep that kept coming back, and made a world of difference.

With her doctor's blessing, I started giving her 1mg of melatonin an hour before bedtime, and by the time it kicked in she would literally BEG me to put her to bed. Before the melatonin, she would be up until 1 or 2 in the morning, completely unable to self regulate. She's 11 now, and still needs the melatonin at night or else she can't settle her brain down, and I swear the stuff is a miracle worker. I only wish I had discovered it sooner, when she was having her evening meltdown tantrums.

amother

Mon, Oct 27 2014, 12:55 am

Thanks to all who responded. Again, I am sure there is a lot we can do to prevent meltdowns and address underlying issues, and I am looking into various avenues and would be delighted (in a painful sort of way...) to discuss those as well, but what I'm asking right now is how do you react when those moments DO happen despite your best efforts. I just feel at such a total loss when that happens, DD feels so unreachable plus a little dangerous!

It's hard because it often seems that there aren't any warning signs of when a situation is too much, she goes from fine to disintegrating very abruptly sometimes. Though the main dividing line seems to be whenever we get home - she holds herself together in public but apparently with much stress, causing her to totally release with mega-hyper-stimming as soon as she lets herself go.

In this particular scenario, which is obviously not the only time it's happened, the "simcha" was actually over Shabbos in someone's house. We could have theoretically removed her at various points, but she spent most of the time playing very happily with other kids in a playroom away from most hullabaloo. Every time I asked her if she wanted to take a break, even once when I phrased it as less of a choice ("Time to come back to the room with Mommy now!") she protested saying she was having fun with her cousins and just wanted to play more. She often shies away when things are too much or too noisy for her, but surprisingly she CHOSE to sit in the "happening" area during the meal, and every time I went to check in she seemed to be doing great! She was calm and well-behaved but not too quiet or withdrawn as she often is - she was asking strangers (well, less-familiar relatives anyway. Never seemed to matter, she can be almost rudely shy at times) to pass her things, having conversations, etc. GO FIGURE! I kind of suspected that we would likely pay for this later but what are you going to do, when things are going so appropriately? Pull the kid away and invoke the tantrum right there instead of having a massive decompression at home? Not worth it.

I do strongly suspect that sugar/food coloring contributed. I have always suspected that this child is sensitive and therefore try to stay away from it as much as possible. I don't have ANY sugary or colorful candies or cereals in the house. Occasionally there's a bit of nosh at a school party or something which I sort of accept as one of life's inevitabilities and hope it's not too much. But over Shabbos I couldn't keep it as low as usual - I did limit her noshing and also steered her towards somewhat safer options (pretzels instead of jellybeans, mean mom alert) but she still had a little candy bag that although small was PURELY sugar with coloring or coloring with sugar, as well as way too much of some fruit soupy thing that can't possibly have been all fruit (I hadn't been concerned about it because it was served individually, one per place. Only later I found out that she took from about 3 of her cousins who weren't interested!!!) and some dessert after lunch. All the same, that was mostly in the morning and early afternoon and the breakdown wasn't until after havdalah. Again, go figure.

I have read about PANDAS and am 99% sure that isn't it, sure enough not to bother testing though perhaps it wouldn't hurt. But we have never had a positive strep culture in the family, ever (unless you count my own childhood. And our pediatrician always does both rapid and overnight) plus PANDAS classically involves OCD, which my DD does not exhibit, and is generally associated with a sudden onset, which is also not the case here - it has been a gradual decline, combination of symptoms getting worse as well as behaviors she always had but as you get older they get less appropriate. Things which seemed normal enough at 2 are no longer normal at 4.

I don't think melatonin is warranted here either, she sometimes takes a while to wind down but is generally asleep at a decent enough hour, and usually sleeps through the night. B"H.

I have been trying to get her OT through the dep't of ed, we even have a local OT who is supposed to be great with sensory kids and accepts DOE. Money is tight but if I would have known the process would take this long I would have paid out of pocket to get it sooner Sad

I feel bad having lost so much time for my daughter! But I am a proactive informed parent and was so sure of her condition that I was sure we could get it, and we are getting it but it is still in the works due to the stupidest technicalities (including, get this, when we finally were POSITIVE we had EVERYTHING in place AND got a meeting set up, the CPSE representative called in sick the day of the meeting. This is NEW YORK BLEEPING CITY, are you telling me there is only one lady in the whole office that deals with thousands of kids who can do this? So now we are waiting for a new meeting date but since it was only cancelled the day of, of course the next few weeks were already booked solid. I am usually a very refined person but I'm having a hard time describing this experience without using any bathroom words.)

So anyway, sensory OT and a SEIT for school are hopefully on the way soon. As are reduced-sugar and coloring-free diet. She is also on a generic multivitamin due to slightly low iron. Probably not PANDAS, and the school is already nut free in our honor and I have no idea how I would even begin to consider gluten free (we LIVE on bread, pasta, and cereal - whole grain and low/no sugar of course). Is there any way to tell without trying it if that is what a kid needs?

FranticFrummie

Mon, Oct 27 2014, 1:11 am

OP, you sound like such an awesome mom, and you're trying all the right things. Hug

If your child can hold it together until she gets home, the DOE might not pick up on her needs when they do the testing. I'm tempted to tell you to give her some sugary candy before she goes in for an assessment. My DD is also one who holds it all in until she gets home, and I know how frustrating it can be. I'll call the school to let them know that she broke down in tears as soon as she got off the bus, and the teacher will say "She was just fine all day! She didn't give any indication that anything was bothering her."

My brother was not allergic to gluten, but he was very allergic to whole wheat. Super refined cake flour and white Wonder Bread were just fine, but if you gave him "healthy wheat" like Triskits or graham crackers he would run around like a maniac until he collapsed into a pile of sobbing hysteria.

It think it would be worth your while to get a complete allergy panel done, and don't do it for just the most common allergies. Sometimes it's the most rare ones that can cause the most severe reactions. (I have a friend who's little boy is deathly allergic to books. It has something to do with the chemicals they process the paper with, and the paper dust from flipping the pages. He has to do all of his studying on a Kindle.)

amother

Mon, Oct 27 2014, 1:18 am

We have similar issues and are concentrating on trying to give child MULTPLE self coping tools for a sort of coping toolbox to deal with these situations
And daven.
Hashem will help.

In the heat of the meltdown I have been told that the most important think is to keep everyone safe. It is not a time for discipline as no learning can take place at this time.

amother

Mon, Oct 27 2014, 1:58 am

Thanks for the vote of confidence, but I'm not so convinced I'm doing the best I can - but I really don't know how to do better. My child already feels deprived and has a strong temptation to sneak treats and lie about it, so I don't know how to save her from that any more... Sad

No worries about getting DOE approved, as I said it is already in the bag, just taking forever anyway Sad

Because she has different issues at school - no hyper maniacal meltdowns but yes some social concerns and some following directions fails - teacher says sometimes she seems to be in her own little world Sad

...and sometimes not, and can't seem to figure out a pattern. Teacher says sometimes she will talk to her directly and ensure that she heard and understands the directions and still DD doesn't move, and she is otherwise a very compliant, eager-to-please child. She loves school and as far as she knows it's going great, but the teacher is already frustrated with her and they've only had a few weeks' worth of school with all the vacation in between Sad

Anyway, between that and flunking the OT eval, I think we are pretty much assured services this time. We would have had them almost a year ago if not for stupid red-tapey things.

So interesting about the kid who tolerates refined wheat but not whole wheat! How do you even figure that out?! But I haven't noticed anything like that here, we always eat mostly whole wheat and we don't "always" have these problems. We have had a pretty thorough allergy testing (not every single remote possibility because I didn't want to draw all of my baby's blood out...) because of food allergies; she is allergic to nuts and a couple of other things which we stay far away from. Another item to add to her anxiety, but she's pretty good about it. That book allergy is freaky too! B"H no concerns here, we are bibliophiles all and live in books and are fine with that.

I guess I just don't know how to keep her safe during a meltdown, and also don't know how to make it end - because sitting back and waiting all I see is it seems to get worse and worse. She just escalates herself because she has no idea how to bring herself back down. I should try going through some methods at a calm time and see if there's any way to help her recall them in the moment, because you're right that the moment isn't going to be productive. But there are a couple of things we do at milder times that I have not been able to access during these hyper-stimming episodes, such as massage and essential oils which she gladly accepts for calming at bedtime and tense times but when hyper she just screams and hits me away. SIGH.

At these times I feel like my baby is being pulled away by some giant wave and I want to jump in and snatch her out, only I can't reach Crying

Today she was still noticeably "off" but a lot better, most of the time I was able to reach her somehow. It's a lot of work though. I hope she's somehow detoxed from whatever happened yesterday.

FranticFrummie

Mon, Oct 27 2014, 5:54 am

I think with my brother, the wheat thing was just trial and error, and my mom noticing a really obvious pattern. Some allergies are not that obvious. With the book allergy, it was discovered because the boy was having asthma attacks all the time, and his parents had a HUGE home library. They had an excellent doctor who was really on the ball, but it took a full panel test to confirm it.

Your child may need anti anxiety medication to help self regulate. Buspar is my favorite, because the tablets can be crushed, they don't make you sleepy, and they are totally non addicting. You don't build up a tolerance to them, and you can quit any time. This means that if you skip a dose it's no big deal. I'm actually looking into getting DD on it soon.

bnm

Mon, Oct 27 2014, 9:21 am

once they are actively in a meltdown you just have to wait it out. the trick is preventing the meltdown.

MaBelleVie

Mon, Oct 27 2014, 9:43 am

amother wrote:

I agree with this. Look, she needs to decompress- I don't think it's realistic to ask her to comply with a bedtime routine when you walk in the door after an overstimulating event.

What I would do:
1. Take into account that she will need this time when you get home. Either leave earlier to account for it, or make the awareness conscious for yourself so you aren't frustrated when it happens.

2. Make a stack of cards with different decompression activities on them. For example, jumping on a mattress or trampoline, doing animal dances, whatever she likes. Give her the stack in the car on the way home and ask her to choose which activity she wants to do at home. Also have a stack of calming activities for after. Let her choose one of those.

3. If the activity is very irritating to you, go to another room. Have your husband supervise if he's available.

4. Let her know beforehand that there will be a time limit to her activity. Set a timer with a visual cue so she can track that time.

5. Once the timer goes off, it's time for the calming activity that she chose. This can be anything she likes- hiding under the table, getting a hug, reading a book alone with a parent, being swaddled. Again, use a timer to limit it.

6. Regular bedtime routine.

amother

Mon, Oct 27 2014, 10:12 am

I think I'd make a special area where she can run and flap all by herself, in a safe way, far from you and the other children. A quiet place, semi-dark.

I'm a very big introvert, and I can relate to your daughter. After too much stimulation, I feel dizzy and foggy and irritated. I've learned to run to my bed and curl up with a big pillow to calm myself. It can take hours for my brain to calm, though. The sooner I get to sleep, the better. Sleep is what really helps. Even just a short nap.

Also, I find this tea very helpful: http://www.davidstea.com/organ.....LN=EN