what is "wrong" with my son???

Mamas I am completely at a loss here. There's something "wrong" with my son, but the doctors keep telling me he's fine. (he's 10)

He... twitches his arms. I mean he'll be standing there, and will flex his elbow BACKWARDS again & again for no reason. Not once or twice, but dozens or times per hour. We'll tell him to stop and he does for a minute or two, but unless he's busy doing something else, he starts doing it again. He also twitches his head... almost like a tic. And he has a stuttering problem that is enough to drive me mad some days. It's not a typical stutter, it's as if he forgets what he's saying, and rather than pick up where he left off he'll repeat the whole sentence. And he can start the same sentence again 10-15 times. The stutter seems to be stress-induced; the more stressed out he is, the worse it gets and if we can get him to sit down & take a few deep breaths, it all but goes away. But the twitching "thing" is constant.

I get asked all the time if he has a behavioral disorder or if there is "something wrong" with him. He's brilliant... doing work 1-3 years ahead of where other kids his age should be. But he is sooooo hypersensitive to stress, and literally falls apart when things get hectic.

Has anyone heard of anything like this? I know he's not hyperactive - anything but, really. And while a few of the behaviors remind me of autism, it's not that either. He craves the company of others, and does not live "in his own little world." I've worked with kids since I was 16, and have never run into anything quite like this before. And I wouldn't worry about it, but he knows his tics & stuttering isn't normal which makes him self-conscious, which makes it worse... and if there was something we could be doing to help I would love to know.

I have NO idea how, but the only thing I've been able to come up with is that maybe it has something to do with the fact that he was born early? He was only 5 weeks early, and the doctors have never said anything about that, but maybe that affected something?!? We do not allow artifical colors/flavors/preservatives in the house, so I don't think it could be food-related. But at this point, I would try just about anything to help him. This is starting to affect his friendships... he has a few friends at church who love him to bits, but has a very hard time making new friends.

love,
mom

 

It cold be torrettes!

 

I'd recommend looking at Aspergers Syndrome.

My brother has it, and it sounds familiar to what your describing. My brother doesn't twitch, but he does suck on his shirt and *ahem* hold onto himself when he's nervous or excited.

He LOVES to be around people, and also has a speech impediment (he mixes words up and doesn't use the regular words like we do ie: use - nuse or brittney=bwrittney)

He's 11 now.

It could be worth looking into.

 

i would look into tourette's syndrome, see if any of that sounds familiar. ((((hugs))))

 

Mama,
Bless his heart!
What kind of doctors are you visiting?
~

 

...

 

I was watching a show the other day which had both kids with aspergers syndrome and tourettes on it....sounds very similar to aspergers.
(((hugs)))

 

Oprah?
It does sound to me like your son has Tourette's. He sounds like a real sweetheart.
I wish you the best of luck

 

...

 

I've ALWAYS had a weird stutter similar to that. I've always chalked it up to thinking a million miles a minute and getting my thoughts jumbled in my head, so I lose track of what I'm saying mid sentance and have to start over, when it then repeats. And it only happens in stressful or emotionally intense moments. In some of my writings from 2nd and 3rd grade you can really see it because I'd accidentally repeat parts of sentances over and over again because that's how I was thinking in my head. Or when I'm writing or speaking, I skip over whole phrases or words without even thinking about it because it's all in my head, but it doesn't translate out into actual words.

So really, it could just be that he's thinking too fast!

I also had a really hard time making friends as a younger kid because of that. I also had a speech problem (lisp) which made it even worse. But it does get better. My friends now don't even notice.

I wouldn't rule out Tourettes or Aspergers though, but it seems to me that often being "labeled" as such can do more harm than good.

 

Tourette's was the first thing that popped into my mind, too. I myself have tics, but in my opinion, they're not that severe. I twitch like mad sometimes, it's like getting the chills, only instead of spreading everywhere, the tingle goes from the base of my back, up my spine, then more or less pops out of my neck and I twitch. Sometimes I quack or make really strange noises when I do it, too, but I can't help it, it just happens. I also saw a bit of that Oprah episode and thought I might have had Tourette's all this time and not even known it, but I'd figure that Tourette's would be much more serious than what I've got...lol. But definitely consider seeing a doctor that could properly diagnose him, there might be some way to control the tics. He could make way more friends if the kids understood what was going on and why he had them and it would definitely give you a peace of mind.

 

my husband has a friend with tourette's and the only sign you'd ever notice is that sometimes he makes a chipmunk chattering sort of sound in the back of his throat. He's a bright, well-educated, air traffic controller. It has obviously not slowed him down or hindered him in any way to have tourette's or the label.

 

Thank you all so much. It's nice to know that this isn't all in my head after all... I'll take him in and hear everything from "there's nothing wrong with him" to "you know boys, they'll do something funny just because they can" to "well it must have something to do with your joint disorder" and none of those really help at all. I thought that perhaps with a specific "title" to ask about, perhaps I could get farther. He is the dearest of boys. He is tenderhearted & caring, and loves to help out with animals. He just doesn't deal well at all with stress or new situations.


What I feel I need, is to get him in to a neurologist. But they won't even make an appointment without a referral, and the only way to get the referral is through a doctor. So I need someone to listen to me.

This has been going on to one degree or another since he was about 4. But now with school getting more complicated and his body growing faster than he can keep up with, it seems to be getting worse. I don't need a label for him, and I don't want to make excuses either. All I really want... NEED for him, is a way to help him learn to cope. De-stressing seems to help, but I can only shelter the lil guy from so much - life does come with a degree of chaos & disorder.
love,
mom

 

I don't know much about Tourette's, so everyone else's word is probably better than mine, but it seems to me that if it's stress related, maybe you should talk to someone about him maybe having an anxiety disorder.

 

mama, both my dh and my oldest dd have full blown Tourette's. My dd's pediatrician (not the one we see now) said she was "just nervous." I HAD to take her to a real PEDIATRIC NEUROLOGIST, at a University Medical Center. Some poor kids go years without diagnosis. Sunshine's was so bad, she has full body tics, that would cause her to jump and touch the floor, and pull her neck muscles so badly, she would get muscle spasms. We saw an excellent Pediatric Neurologist at a University Medical Center near Chicago and he diagnosed her (after the Ped at a community Hosptial had said she was "just nervous.") She needed treatment, the tics were interfering with her ability to learn, eat, play and socialize. It took more than a year to get the proper mix of meds and therapy (Tourette's is a completely neurological illness, but COPING with it needs therapy, often, as people can be so cruel.)

My dh never got proper treatment as a kid, and I think that is why he did so many drugs as a younger man and drinks and smokes so much as a adult. He honestly told me "This helps with the Tourettes." I wish he would see a doctor about it, but his "cure" is what is is used to. Luckily, we got Sunshine to a doctor BEFORE she started self medicating (and, basiclly ALL kids with TS will start to self medicate, because it is such a horrible illness, and they WANT control over it. The prescriptions used are MUCH safer than a lot of the stuff kids try on their own. I don't even want to tell you some of the shit my dh did when he was younger.......)

A University based Teaching Hospital, with it's own Pediatric Neurology department is really the only way to go. We've been there. We also waited TOO long to allow Sunshine to take Adderall, (as 99% of people with TS also have ADHD, in a non-functional form) and waiting (because we didn't want to "turn our child into a zombie") caused damage to her social life, which took years to repair, and still has impact on her self image. The meds, being prescribed PROPERLY will not "turn a child into a zombie." When we got the right mix of meds, Sunshine was ELATED, (not from the drugs) she said, "For the first time in my life, I can sit still. I don't have to move constatntly, I don't have muscle pain all the time, the Obsessions are better, I can FUNCTION like a normal kid, I CAN HAVE FUN!" It was almost like a miracle. I regret to this day, that we didn't treat her sooner. I will always blame myself for the fact that she still is in therapy for self esteem problems (she thinks she is "Ugly" because kids used to make fun of her because she had facial tics) and if I could take it back, I would have her treated YEARS earlier than we did.

JFTR. IF it is Tourette's, it is NOT an "Anxiety disorder. Although TS can cause anxiety (especially when kids can't control themselves, and are very sad because of this) TS is a NEUROLOGICAL disorder. It is also genetic (although it can skip generations, and you may never know who in the family had it, because people usually did anything they could to hide it, that uncle, who acted weird and drank himself to death, he was probably the one with the TS.) and it has been proven to be a disorder of Neurotransmitters and the brain itself.

I'll find a link for you. But a real neurologist has to diagnose it, there are also epileptic disorders which can manifest with similar symptoms. Good docs will do an EEG and a CT scan and/or a MRI to rule out frank brain lesions. There IS a lot of testing, but it is worth it.

 

If a doctor won''t give you a referal, you can get an over ride from your insurance company. We had to do this, for other things years ago. Now we have a PPO which doesn't require referals, but we did years ago.

 

I don't have anything to say that hasn't already been said, but I'm just wishing you much love and luck. Maggie Sugar had some excellent advice about the university hospitals and the possibility of getting a referral override through your insurance. I would highly recommend looking into that. I really hope that you can get to the bottom of this and get the help you need. Stay strong mama.

{{{Big Hugs}}}

 

Hiya....
Just thought Id throw some things out there for you
My daughter has a dx of Autism Spectrum Disorder. She is now 3 1/2 .. dx'd when she was 18 months old. Anywho... thru my journey I have read and studied so many things.....
What sort of Dr's has your son seen?
The first place I would go is to a developmental neurological peditrician.
From what Ive read, kids on the spectrum are at a higher risk for adolesent onset seizures.
And Also keep in mind that the "spectrum" includes, and not limited to.... tourette's, asperger's , add, adhd..... PDD~NOS, Autism and so on.
There are other things also... epilepsy...

Did your son suffer from febrile seziures?

Seizures which involve only part of the brain ("partial" without alteration of awareness can occur in persons who have had injury to the brain (as from trauma, stroke, hemorrhage,malformation, tumor). Most commonly, they involve rhythmic (2-3 cycles/second) twitching of face, hand/arm, and/or leg on the side of the body opposite to the side of brain from which the seizure emanates. Generally, this type of seizure lasts minutes. In some individuals, it forms the prelude to a generalized convulsion. Occasionally, it can go on for a very long time (hours-days). The longer it lasts, the greater the associated fatigue. Extremely prolonged versions of this seizure type can interfere with sleep, cause muscle pain and lead to exhaustion.

Epilepsy is not a disease! It is a neurological condition characterized by sudden bursts of electrical energy in the brain which results in a seizure.

There are over 40 different kinds of seizures which take a variety of forms. Some appear as a brief stare, or unusual movement of the body. Others manifest as changes in awareness or convulsions. While many people attain partial or total control of their epilepsy through medications, about 40 % do not.

While some frequently identified causes of epilepsy include head injuries, infectious diseases, chemical imbalances, strokes and tumors, over half the origins remain unknown. Epilepsy can also affect anyone at any age, although it tends to most often strike during childhood.


Partial seizures (formerly called petit mal seizures)—If the excessive electrical discharge in the brain is limited to one area, the seizure is
partial. A child who has partial seizures will not lose consciousness.
Often you won’t realize that a child is having a seizure, you may think
the child is daydreaming for a few seconds.


Helpfull?
Here are some links ...

http://trainland.tripod.com/epilepsy.htm
Epilepsy and Landau Kleffner Information and Sites

http://www.autism.org/seizures.html
Autism, Puberty, and the Possibility of Seizures

http://www.familyvillage.wisc.edu/general/ketogeni.htm
You mentioned diatary intervention... worth looking into
Ketogenic Diet

http://www.aap.org/
American Academy Of Pediatracs

 

Good seizure info.

My dd Sunshine had febrile seizures when she was a baby, as did I. Sunshine also had what might be absense seizures, and her EEG is "normal with some anomolous variables" which almost what mine says. As for my dh, his mother had severe post partum depression (she was actually hospitalized for several months, which is what they did in the years before SSRI antidepressants) and can't remember ANYTHING about my dh's infancy. We have basically NO medical history on him before the age of 9 or so (when the tics started.)

Neither my daughter nor I have autism spectrum attributes, but my dh has mild Ausperger's type stuff, but not at all full blown Aus. Just can't get off a subject, despite people not showing an interest, getting too into things, so that you can't talk to him, (he can't talk when he listens to music, it drives me nuts) werid interests, to the extreme, and he rocks, but denies it. He does rock too much anymore, maybe it's something you outgrow. He is an Engineer, and I have met the dudes he works with and I would say 40% or more of them have some Ausperger's tendencies. Bear looks totally normal, compared to some of these guys, in fact, guys having seizures at work isn't all that rare. Bear has more than once helped a fellow worker off his chair and onto the floor, during a seizure, then calling the nurse. There are all dudes with really high IQs and odd tendencies. Not uncommon in Engineers, it must be the way the Engeneering mind works. JMO.

It was surmised that I probably had absence seizures, but take meds for my migrianes which control this as well. Our family is really a neurological mess. LOL. My dd's Neurologist used to joke, "A womyn with OCD and intractable migraine, marries a guy with TS and ADHD, you couldn't have planned it better." I guess the weird attract the weird.

 

wow. that aspergers sounds a LOT like me and my daughter. like not being able to take verbal cues very well. i've learned a bluffing technique that has served me well, as well as have developed the sorts of relationships where i can rely on my friends to tell me very clearly when i'm getting out of hand without getting all hurt about it.