Huge swings in regulation - Mothering Forums

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#1 of 10 Old 05-16-2014, 07:26 AM - Thread Starter
 
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You’ve all always been so helpful in sharing your experiences with your kids with ASDs. I have another question I’d love your insight into.

 

My son, 4, experiences huge fluctuations in regulation. When I say huge, I mean enormous, gigantic, colossal… . At times he’s so regulated that even I almost wonder if he’s really on the spectrum. At times he can barely function. Usually it’s somewhere in between. His level of regulation can shift wildly in a day, or stay about the same for a month or more.

 

We’ve been working with an integrative developmental pediatrician for about 9 months, and he’s on quite a few supplements at this point. We’ve done OT off and on. I’ve tracked his reaction to many, many foods. So far, I’ve been able to connect absolutely nothing to his regulation/dysregulation cycle.

 

(About the only major thing we haven’t yet tried is GF, and that’s only because he (finally) has an appointment with a GI specialist at the end of the month and we were advised to keep him on gluten till then so as not to have to put him back on it to test him for gluten sensitivity (he’s tested negative for celiac).)

 

When I say dysregulation, I’m talking about everything. Physical, emotional, sensory, cognitive processing, language, play, sleep.

 

Have others experienced these wild swings? Have you been able to identify their sources? I feel like I’m really failing him by not having figured this out and leaving him to feel so awful so much of the time.

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#2 of 10 Old 05-16-2014, 04:05 PM
 
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Hi Baltmom, i'd consider two things, aside from taking gluten out of his diet.   I'd consider his gut health...and try a "sugar" free diet, which, is a candida regulating diet.  By cutting out sugar you don't feed candida.  This also means taking out starches and many grains, for a period of time, and then supporting the gut repopulating and rebalancing with healthy organisms.  Fermented foods fit the bill or just plain probiotics.  An excess of candida can cause disregulation.  I'd also consider finding a good homeopath to prescribe for the totality of his symptoms as you describe.  A homeopath who's also been trained in the CEASE method can evaluate with you the toxic exposures that he's had and help him to detoxify.

 

While I think supplements are very important to feed the brain and they support detox pathways in the body, depending on what they are, they can begin the detoxification process too quickly and herxheimer reactions, which are a build up of toxins in the blood that the body cannot deal with quickly enough, will cause a lot of the swings you describe. 

 

Who is giving you advise on supplements?  I'd suggest finding someone who can advise you if you don't already, and or do a lot of reading (Dr. Amy Yasko has good stuff).  Also consider using during "detox" lots of support supplements that are calming, in doses much larger than you'd normally such as lots of extra magnesium.  The body excretes what it doesn't use, but, magnesium is very calming and a key mineral in detox.  You also can consider dialing back and reducing the dosage of supplements to slow the detox down. 

 

Supporting gut health will help detox.  So will homeopathy.  Putting more support, like a gut healthy diet and homeopathic care in place with the supplements will work synergistically and cause things to rebalance themselves more quickly for your son.

 

Of everything I ever did for my son, who's now 12, CEASE was the most life altering.  From 8 to 11 his neuropsych report completely changed, with his working memory going from the 9th percentile to the 85th.  The brain has great neuroplasticity and it is amazing what can happen with the right diet, supplements, and treatments!  CEASE was created by the late Tinus Smitts, a dutch physician and homeopath.  Google his work and you'll find his website.

 

Of course, while he's this disregulated you're going to have to make his life very orderly, structured, and low stress.  Maybe that's a different thread.  How are you doing managing his behavior?

 

I wish you the best.

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#3 of 10 Old 05-17-2014, 10:44 PM
 
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For my DD on the spectrum, her food diet didn't seem to have an impact, but getting her sensory diet did. She needed just the right kind of sensory input. With either not enough sensory input OR the wrong sensory input, she just couldn't regulate at all. With the right sensory input, however, she was really together. Swimming was what worked very best for her, and she ended up a competitive swimmer because she did so much of it!


but everything has pros and cons  shrug.gif

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#4 of 10 Old 05-20-2014, 05:04 AM - Thread Starter
 
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Thank you both so much. All suggestions feel very much on point.

 

I think we're still in the very early stages of figuring out what is both the right sensory input and the right amount. For now just about everything seems overstimulating, so I struggle to sort it out.

 

I think gut health is at the heart of a lot of this. I guess I hope it is, because that would give us a direction, but I also really think that's a very challenging area in his body. Hopefully our GI appointment next week will start to answer some questions. The only sugar he eats is fruit, and he does eat a lot because he won't eat vegetables. And he definitely likes starches, so that certainly could be a piece of the puzzle. He's been on probiotics for more than a year. 

 

The integrative developmental ped is the person overseeing the supplements. The dysregulation started before the supplements, and are a big part of the reason we began working with the integrative doc. We also see a holistic doc who has him on two homeopathic preparations.

 

I guess I was just wondering how common it is for the dysregulation to come and go so drastically. And if there's something we've overlooked that might be responsible.

 

I'm not sure how to answer your question about managing his behavior. Knocking wood, this isn't a major challenge for us right now. The main thing is just how hard it is to see him so different from the way he is when he's regulated. He plays differently, talks differently, processes differently, experiences the world differently. It's not fun for him, and I think about all the developmental stuff he's missing.

 

Thanks again.

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#5 of 10 Old 05-20-2014, 05:36 AM
 
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Yes, swings in regulation is something you will see in kids that have ASD.  I guess another thing I should add is that you should be prepared to keep looking for "new" remedies, when the old are no longer helpful or the symptom picture changes.  You should also be prepared to add supplements for different presentations.

 

It took a good 9 months, when we found the right diet for my son, and had helpful remedies and supplements, to see him stabilize, and he had been on a path to a more contained specialized classroom and had been assigned a full time aid.  He went from being very disregulated to being an integrated member of his class. 

 

Keep forging ahead and trust that what you can't see is the body detoxing, the brain building new pathways and the gut healing.

 

I do think that the wild swings are gut related just like you.  Unfortunately, part of the gut healing is for dysbiosis to close over.  THAT takes time.  It may need a VERY specialized diet.  Do some reading on GAPS which is a very strict anti yeast/candida diet.  I never needed to use it for my son, because for him, gluten and dairy removal was all that was required.  Some children have guts in very bad shape and need a more drastic reset of gut flora.  Dr. Martina Mcbride is the physician who developed GAPS.  It isn't a diet you do forever and it is easier to do when they are young and you have more control over what they eat.

 

What I mean by managing his behavior....when he is disregulated i'm sure he feels out of control.  Having comfortable family routines about what he should do when he feels this way can help in the moment.  Listening to books on cd to quiet the body and busy the mind helped us.  I also needed BREAKS because his disregulation would upset me and get under my skin.  I'd feel like i'd have to work very hard keeping him together and it took a toll making me frayed around the edges.   Getting away from the kids was a big help to me at those times.

 

I guess i'm saying, be prepared to rethink some things to help his body further if need be, but, also keep at it.  It takes time to see real lasting change.  Look for longer periods between disregulation where he's more together.  Look for him to come out of swings more easily.  Small changes can keep up your spirits and give you motivation to keep at it.

 

All the best.

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#6 of 10 Old 05-21-2014, 01:43 PM - Thread Starter
 
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I also needed BREAKS because his disregulation would upset me and get under my skin.  I'd feel like i'd have to work very hard keeping him together and it took a toll making me frayed around the edges.   

Yes, livinglife, EXACTLY. Thanks for putting it so succinctly.

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#7 of 10 Old 05-23-2014, 04:40 PM
 
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Originally Posted by Linda on the move View Post
 

For my DD on the spectrum, her food diet didn't seem to have an impact, but getting her sensory diet did. She needed just the right kind of sensory input. With either not enough sensory input OR the wrong sensory input, she just couldn't regulate at all. With the right sensory input, however, she was really together. Swimming was what worked very best for her, and she ended up a competitive swimmer because she did so much of it!

This is true for my son too; although supplements especially B vitamins and probiotics are in our repertoire too.

 

Biking over bumpy trails, snow shoeing, the trampoline, and swimming are all great. A good dose before school, again after, and around stressful events are all useful.   But at that age (4) it was something 2-3 times an hour. Google sensory diet for more age appropriate examples. 

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#8 of 10 Old 05-26-2014, 06:35 AM - Thread Starter
 
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Wow, 2-3 times an hour? That's helpful to know. We do tons of sensory input but not as frequently as that, so that could definitely be part of it. After three OTs, we still don't have an actual sensory diet, and what we do mostly feels more reactive than proactive. Also, everything we do seems to be overstimulating and activating rather than calming and organizing. But more often could make a real difference. Not quite sure how, though - I work full-time, so he's in preschool and daycare full time...

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#9 of 10 Old 05-26-2014, 04:41 PM
 
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Wow, 2-3 times an hour? That's helpful to know. We do tons of sensory input but not as frequently as that, so that could definitely be part of it. After three OTs, we still don't have an actual sensory diet, and what we do mostly feels more reactive than proactive. Also, everything we do seems to be overstimulating and activating rather than calming and organizing. But more often could make a real difference. Not quite sure how, though - I work full-time, so he's in preschool and daycare full time...

 

We do something right before and right after school, but he does sensory breaks at school too, even one to start his day. Before public school, I had the OT go to the preschool and consult to them, and that helped. The preschool or daycare can have him do helper jobs that are heavy work. My son pushed younger children on the tire swing, and gave them a wheelbarrow ride up the hill, carried the gallon milk jugs up from the kitchen, helped their janitor move boxes and shovel snow, did the digging in the garden, etc. Also, in anyway he can get quiet or alone time there to balance the hard work of being in social environments all day will help. They can also set up sensory sites in the class that help him, like a water table or a bean bag corner where they give him smushes. They can't wait til the end of the day, he will be too far gone by then.

 

Can you ask him what tools calm him? Can you tell? Before we did the diet, we did testing of different things to see what was calming, exciting etc. 

 

Good luck! 

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#10 of 10 Old 06-09-2014, 04:45 AM - Thread Starter
 
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Just wanted to thank everyone again. We saw the OT again last week and she was able to see what I'd been describing: that all activities are stimulating and none are organizing. So for now our approach is to do one activity for a good while, and use the opportunity to practice ramping up and down, up and down.

The heavy work stuff is great. I sometimes dream of moving to a farm. Between the animals and the chores, he'd love it.

I also hope swimming will become part of our routine at some point. Lindaonthemove, at what age was your daughter able to really engage with it?

Thanks again.
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