Stims, Tics.....What do you think, where to go from here

[bdjjmj]

OK ladies looking for thoughts.....DS 10 1/2 ( moderate Intellectual disabled, apraxia, fine & gross motor <1%, sensory issues.....much likea 4yr old) is displaying more repetitive behaviors and general unhappiness . I am at a loss for what to do and trying to figure out if they are just  stims (though he is not autistic) or if they could be motor tics which I am not to familiar with. Previously he did visual stims like shaking items in front of eyes or little hops.

 

He has started sticking out and biting the middle of his tounge , to the point where he has furrows in his tounge. He will get into periods where he does it every 30 seconds for an hour plus and other days very little.  Also chewing the inside of his cheeks to the point of bleeding and chewing on his shirts to the point of destorying the cuffs biting holes through them. He has always had low oral tone and been somewhat oral but chewing behaviors and the associated oral motor z-vibe work had stopped many years ago. The tounge/cheek biting one almost seems to stress him out, it dosent seem to bring him joy but to cause him to get upset/stressed/anxious like he cant stop. He will not stop doing it with reminders, correction, or positive replacement,  He will get so involved in doing this espically in the evening that he kind of breaks down & "loses it" we have to put him to bed for the night. Its like he has lost control of his system or his brain or something????????

 

He has also started jerking his head straight back to a 90 degree angle, so as to look up at the ceiling, its a pretty violent jerk and he will do like 2 or 3 in a row. I am trying to figure out if this could be what is called a motor tic as opposed to a stim. He will do it when he is happy, when he is sad, in the middle of a sentence, at home, in public at therapy all over. I have noticed no particular trigger or that it is during a particular emotion. It really stands out to all around him and I dont know what to do about it. It is a very "socialy akward" display and I feel like everyone is staring at him {well way more then they did anyway} I have never seen him do any thing like this that he even does mid sentence before. Any ideas???

 

I feel we have also seen more emotional.......falling apart, crying, whiney and defiant.......wont eat, not listening ect. behavior. Also he will wake up in the middle of the night in a mini rage of sorts will have torn all blankets off bed and will come to our room but then when we ask what he needs he storms back to his room jumps in bed and goes right to sleep....I hate to say it but like he is momentarily possesed.....

 

I would appreciate any thought on any of this. Its like he turned 10 and his world went crazy, I just want him to be able to be happy again and not seem trapped by his body/mind. Is this Tics, Anxiety, OCD...... Can knew conditions/diagnnosis pop up at this age???Who would I take him to see for any of this? Thanks for reading

[Pegs]

The "momentarily possessed" comment, along with some behaviors which might be called automatisms make me think partial seizures. Possibly way off-base! But if you think seizures are a possibility, that might be something to explore further.

 

My DS seems to be having some seizure activity, which is sometimes preceded by a psychic aura (not as woo as it sounds). Much of what you've written looks familiar to me.

 

I hope you get some answers soon, whatever it is. It's an awful feeling, sitting there watching a kid struggle while their brain misfires, regardless of the etiology.

[texasmama]

(((hugs)))  I do think a rule out is seizure activity.  Can you get him some chewelry?  It seems like he is looking for the sensory input with chewing.  That would replace the unwanted behavior with a non-harmful one.

 

http://www.chewigemusa.com/pages/collections

[wapiti]

A new condition of tics/anxiety/ocd popping up may point toward PANS/PANDAS.  It seems as though kids with an underlying history of sensory stuff may be more susceptible.  Unfortunately, this is a relatively new medical frontier; it is not easy to find an experienced practitioner.  The science is unclear at this point in time, and the evidence is inadequate, but one theory is that an immune or autoimmune issue gives rise to inflammation in the basal ganglia.  Additional possible symptoms include dilated pupils, frequent urination at bedtime, a change in handwriting.

[prairiewindmomma]

I'd start with his developmental pediatrician (or whoever his main medical provider is---assuming they have experience with SN stuff).  If your developmental ped is not good, I would go the neuro route.   My first thoughts are seizures or sensory stuff, but it could be many things.  In the meantime, while you wait to get in, I would be offering chewies/giving crunchy food and making sure he is getting some good procioreceptor & vestibular stimulation. Does he like to swing?

 

My dd's first sign of seizures was raging and crying---just being emotionally off. Does he often sleep after a fit? That in and of itself sends "seizure" warning bells in my head. 

[geodob]

Something that you could have a look into, is 'Tourette Syndrome'?

While this is public known as causing people to swear and use obscene words?

This only applies to about 10% of TS people.

The primary issue, is with Motor Tics, Oral Tics and is often accompanied by OCD.

It reaches its severity around 10 to 12 years of age, and gradually recedes during adolescence.

 

Though it's also a spectrum, and can effect people in different ways.

Here's a link to an article on it:

http://www.ninds.nih.gov/disorders/tourette/detail_tourette.htm

[bdjjmj]

Thank you all so much for the feedback. I will certainley look into and research all of your suggestions.

 

Sezuires could be possible as there was a time a few years ago we questioned if he was havig them as he was having alot of blank staring sessions?? Certainley worth considering.

 

I was not familiar with PANDAS and am looking into it as well.

 

I guess I never thought of pure tourettes but after reading the article some of that fits as well.

 

It is quite hard watching them suffer. I always thought watching him struggle so much to learn academics, or to write letters, or to ride a bike, or to talk was so hard.....I would rather watch those things every day then to see him struggle and be upset within him self and to hurt emotionally.........oh the lessons we learn on this journey! Thank you dear mothers for your time!

[Julie of KY]

The neck jerking sounds typical of a tic with Tourette syndrome, the mouth stuff and chewing does not sound like typical tics.

 

Yes, Tourette's and other problems can start at this age - it's actually fairly common for Tourette's to start now.  Tics can be very hard to deal with, but over time you can usually learn to some or learn other coping mechanisms. Tics often come and go and new tics may appear at any time. It is much easier to deal with if you understand what is going on.

 

I'd get in with a good neurologist or a movement disorder clinic and have them evaluate for tics, seizures, etc.

[Slipper]

My daughter (who has autism) used to do a lot of chewing behaviors when she was younger. We bought her things to chew on but she eventually outgrew that stage.

 

The night-time problems sound like night terrors. All of my kids had them. My oldest in particular would appear possessed and would even growl on occasion. Typically, those with night terrors do not remember them in the morning and are unresponsive to comfort or attempts to talk during the event. 

 

The head jerking back sounds like a seizure. My daughter also did that occasionally which resulted in testing for seizures. It was negative at the time but she has recently been diagnosed with seizures, so who knows?

 

Basically, sensory issues, night terrors and possible seizures are my thoughts. All the best....

[Julie of KY]

My daughter started Tourette's with a violent neck jerk similar to what you describe. Neck jerks are a common tic, however they are not usually so violent in nature. (Not saying it is a tic, just a possibility).

[HSsquared]

You may find out if it is a stem or a tic by "joining" with your child's "moments." Joining is a term coined by ATCA as the initial way to connect with their kids. It can be a very slow process, but after many attempts, your child may start realizing you are joining in with them and want to reach out to them and in turn they begin to reach back, to you! So, you may want to check it out. http://www.autismtreatmentcenter.org/.

 

Those behaviors can be spurred by many factors, known and unknown. Has a anything changed in the diet? New stress levels? New environments? New clothing? So many factors could be at play triggering the tics / stim behaviors. A journal of food, environment, clothing, etc may be helpful to monitor trends. Sounds so stressful and I am so sorry and hoping you get professional answers soon to help you know how to best minister to him.

 

I noticed you posted this ahile back, do you have any updates?

[klmama]

It could be seizure activity - your doctor should be able to help you determine that.  It could also be a tic or Tourette's.  Has his diet changed? Is he taking new vitamins with manganese in them?  I've read that excess levels of manganese can lead to tics, and it doesn't take much over the recommended amount, which depends on weight. If it's not seizures, you may want to look at manganese intake.  Also, some people are able to reduce tic activity with taurine supplements; you'd want to research to find out the right amount and any contraindications before trying it.

 

 

 

 

 

 

[MyLittleBears]

I have heard that sometimes it can be a calcium deficiency but not sure if it was referring to just  a mild tic or severe. Also artificial colors and dyes in foods and personal products can affect behavior in some children.

[Kat w]

Op.

 

I know this is an older thread. But. Have you talked with someone yet?

 

My son did similar things, they finally caught a seizer on a scan.

 

He's on intunive. It treats a variety of things. Seizures being one of them.

 

It's been a LIFESAVER for son and mom.

 

I highly recommend talking with your doc about it.

 

It also helps the nighttime anxiety.

We had it huge. Well. Still deal with it but its alot better on the intuniv. I swear by this med. And I'm not a med fan . but it made life after 4 pm doable here.

Hugs. That's hard. Hole you and he got some releif

[Guest Noelle150]

I know this is an older thread but I still wanted to chime in. 

My son (Asperger's syndrome) when through a chewing phase as well, at about 10 or 11 years old (now 15). He chewed on clothing, bedding, etc. Constant removal of the items, with minimal comment (in other words, don't make it a big deal) on my part, and eventually he stopped. 

My son often has violent tics that are actually brought on by food preservatives. Sad but true. Some get so bad he will be in tears because his neck hurts. Following the Feingold Diet helps tremendously, but it is hard to stick to when you have a child that wants "normal" treats. He hasn't had tics in about 2 weeks, then yesterday,  he ate Maltballs. Today he woke up with tics. 

Yes, certainly tics can be from all sorts of medical reasons, but they can also be environmental/food related. 

My daughter went through night terrors. Terrifying for parents, but she never remembered them. She would scream like she was being killed, wander around and then go back to bed. She thankfully out grew them around age 7.