Of course I cannot give medical advise so these are just my personal opinions:

I would get on the books for another appt, but if the events get worse or he appears to be in distress (which he doesn't look to be now), then by all means don't wait. Mom's have good instincts for when to throw in the towel. I think you will know what the best call is based upon what you see and feel.

You said the EEG was coming up...when?

Can he relate to you anything he feels during these times? Does he feel tired, have any chest discomfort or strange feelings in his chest (pressure, shaking/jumping/fluttering), any breathing changes, etc? Have you checked his pulse during these times for high or low rates?

Have you checked side-effects to any of his meds?

BTW, he is a handsome young man!!!

He says he isn't tired. When I've asked what the yawning feels like he says "like air" hahaha...so tha doesn't tell me much. I tried an evil experiment tonight where I promised him a piece of candy if he could go a certain time without yawning. That resulted in him coming up with some pretty comical ways of hiding the yawns behind his hands, under his shirt, and blaming them on various toys. So, at least I know he really can't control them. (He got the candy anyway!)

I will try asking him more specific questions tomorrow and look for the things you list. I'll also put the pulseox back on him and watch the heart rate as I was only paying attention to oxygen saturation before.

The video EEG is September 13th. He doesn't take any serious medications - multivitamin and senna laxative, neither has any side effects like this of which I am aware.

Thanks again for your time and consideration.

Rebecca

Hi Rebecca,
You certainly have a lot on your plate there.

I just wanted to mention to you that "mouth opening" can be a tic. Not sure it's that "unusual".

The 3rd video down shows more clearly that it is more of a yawn (as in: drawing in air) than just opening of the mouth but I've seen yawing tics before.

I just wanted to leave you this link from Leslie Packer's site. I personally would advise that you show no more attention to your son about this yawning or blinking. I'd just ignore it actually. With more tests coming up soon you'll hopefully get more answers. Now you have the videos on record, it might be a good idea to just let him be for a while and see how he does.

Anyway, in the meantime, here's a List of Common Tics from what I think is a good source.
http://www.tourettesyndrome.net/wp-c...CommonTics.pdf

All the best to him and to you in your endeavours to find information to help your family.

you take care of YOU too hey?

Edited to add: Just also wanted to mention that a lot of children around the age of 4 have a transient tic. There are a number of conditions which involve tics. Simple childhood tics or transient tics usually disappear over several months.

Tics can sometimes be internal although I'm not sure if there was any Diaphragm involvement during his surgeries and whether that could be causing some sort of "irritation"?

You're doing the right thing by having him checked for seizures.

Thank you! My understanding is that tics are a diagnosis of exclusion. So, while we work on excluding the other possibilities I think your recommendation to treat this as a tic and "ignore" is a good idea, too. The pediatrician gave us a handout about tics, which I glanced over, but we so rarely get to have something normal going on that I hardly pay attention to handouts from the ped. Thanks for the reminder about how to approach tics at home. :)

I do believe it's most likely a tic as his father has some OCD-like psychological issues going on (yet to be formally diagnosed).

Because of his medical history I feel we need to be extra careful in excluding the possibilities. Cardiac anomalies are a feature of his overall diagnosis, although he has never had that particular feature presented. My husband and I were talking last night and have decided we will work on getting another cardiac evaluation done as soon as possible. Although he had a cardiac work-up done as a newborn, we have been sorely disappointed in other areas managed by that particular hospital, so we feel it's more than warranted to get this area re-evaluated. Besides, ECG and echocardiogram are easy, painless tests.

We have, for the most part, been ignoring the yawning as much as possible...if yawns weren't contagious that would be a whole lot easier!

His prior surgeries did not penetrate the diaphram. Three were through the abdominal wall, one along the gluteal cleft, and another through the lumbar spine...the others were exploratory. So, I don't imagine this is a diaphragmatic spasm or whatever.

Another concern of ours is his pulmonary function. He has multiple vertebral anomalies (hemivertebra, kyphoscoliosis, rib fusions, etc), so thoracic insufficiency is a general concern. However, his spine and rib cage has remained stable at every 6-month check-up with the orthopedic surgeon. I cannot imagine that things would deteriorate so quickly and suddenly in this area. So, I feel this is far down on our list of issues to exclude.

Thanks again to everyone for the thoughtful (and very helpful!) replies!

- Rebecca

Pediatrician appointment today
 

BJ had his first day of preschool today and I snatched him out early to take him to the pediatrician. He was yawning pretty intensely on our way to the school and when we first got there, but it seemed to calm down a bit after a few minutes. He did a good bit of yawning at the pediatrician's office, too. She agreed a cardiology work-up would be wise and ordered an EKG and echo. She was very reassuring that this is most likely a transient tic, but agreed with the need to rule out other possibilities.

He had the EKG done this afternoon and although I have no idea how it went, I always consider a good sign when a radiologist doesn't come rushing into the room. ;) I got in touch with a cardiologist at the hospital where he will be admitted for the video EEG and he said he would be happy to review his history and any tests. He also said he doesn't believe this is likely a cardiac issue, but feels these tests are warranted as he hasn't had any cardiology testing for several years.

The echo is scheduled for tomorrow morning and the video EEG will be next Tuesday.

So that is where we are!

Thanks again, everyone, for your valuable input and suggestions. This has been so helpful.

My best,
Rebecca

Glad they are working things up. Nothing like a little piece of mind. I will be looking for news and updates.

Thanks

Just got discharged from the inpatient video EEG...it was totally normal. Had an echocardiogram and EKG last week which were normal. So, now they are recommending an MRI of the brain and spine to especially see if his syrinx has grown. So that's where we are at now. Yay for no seizures!

Good news. thanks for the update

Tingling in hand
 

So, just to recap...my son has been excessively yawning. He has had bloodwork, EEG, echocardiogram, EKG, and video EEG which have all been normal. He is scheduled for an MRI of the brain and spine on the 27th.

Just now he told me his left hand "feels like sparklers" which I am guessing is tingling. He has never ever said anything like this before.

What do you think? Document it and mention it at Tuesday's appointment? Call someone now? Go to the ER?

Really...with this son of mine I never know. Thanks again for any time you devote to us.

I would ask him if the other hand ever feels like that or his feet. Also whether if it stays that way or if it's like that when he wakes up (like it fell asleep from sleeping on it, etc).

Of course, it's Saturday now (I just saw the post) so don't know if you call the doctor or not, but Tuesday is right around the corner....and of course it should be mentioned then.

Let us know what they say.