Should we see a cardiologist then? He had a cardiology eval after echocardiogram as a newborn and everything was structurally fine. The only thing was "mild tricuspid insufficiency" but wasn't concerning to anybody so he was released from that specialty.

I guess what I'm trying to figure out is what you mean by "evaluated by another doctor"...another pediatrician? Another neurologist? Or a new sub-specialty altogether?

Thanks!
Rebecca

I would take him back to his pediatrician and discuss whether he thinks a cardio consult is warranted, just to rule out any problems. Has he seen the videos or a log of how many events? This just seems way outside normal limits. Have they done routine blood work recently? I'm glad the neuro is doing the extended EEG to rule out atypical seizures. The pulse ox hopefully rules out any O2 desaturation..,.which is a good thing.

The pediatrician saw him yawn during the appointment a few times, but not as severely as in the videos. At the time of the appointment I hadn't yet kept a formal log. We did do basic bloodwork and that was fine...everything wrhin normal range - including bicarb (it was 28), which is something usually below normal for him because of kidney issues. Kidneys were our main worry at first, but when the bloodwork came back normal we felt okay.

I will call the ped on Monday to schedule another appointment. Or should we throw in the towel and head to the ER? It may sound silly, but I feel like we has been through so much with him that we are desensitized to what is or isn't an emergency.

Thanks again,
Rebecca

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

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

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.