Interesting Telepsych Appointment

[Mamaof5]

So, today we had a telepsych appointment for 4.5 yr old. Right away his first comment was "her eyes are very spaced apart, she's has the classic signs of star burst and macrophaging of the right eye. I think there are genetic issues going on here - I want genetic testing done"

He's also putting her on clonopin (rather than klonopin) but wants an EKG\ECG done first. He wants an MRI because what we've described as staring off into space as if she's not there (an Autie thing I thought but we have major seizure illnesses running on both sides of the family, including direct maternal links to her great grand mother who was a clonic sufferer and a cousin who is a clonic\absent sufferer). So he said we're doing an MRI I want to rule out seizures asap.

He is putting her on .0025 clonopin (but not before an ekg\ecg) and going from there..he's focusing on the medical aspects and Occupational Therapist (OT) aspects. She already has speech therapy and tomorrow is the intake for Occupational Therapist (OT) and community living services. Holy heck I wasn't expecting this to go so fast from here but what a relief. He's a pediatric psychiatric from Sick Kids Toronto (hence via telepsych services). He also is doing a referral to Dr. M (one of the best pedi's in our area second only to doctor B) and to Ms W at Sick Kids for cognitive behavioral therapy.

I'm floored because I did not like him when he did the telepsych for Big B (if you remember I wasn't too pleased with the "blaming the parents" and "defensive parents" bit he put in his report with Big B) but this time around - holy cow!!! He was spot on, right to it and straight up. I think I change my mind about him for now anyway *lol*

 

[Mamaof5]

Edit button is giving me a hard time...

I meant clonidadine (spelling?) not klonopin

 

[confuzzled]

i dont know what a telepsych is, but i'm glad you are happy.

i'm not going to address the other issues because i'm sure there will be plenty of thoughts on it, but i'll add my .02 on this part:

i just wanted to say that my difficult child 2, who has who knows what going on, ALSO has major, just recently identified Occupational Therapist (OT) issues going on, and not just the sensory issues one would expect.
these issues are the single most important underlying issue of them all--how it was missed all these years, I don't know (she was evaluation'd and had some limited treatment in the school system but was d/c'd early on due to "amazing progress", aka massive case overload, if you know what i mean).

anyway---my point is, dont underestimate what a factor these Occupational Therapist (OT) issues are. they are real. and i'm thrilled for you that you are addressing them NOW. please have a thorough workup and follow through...mine is brilliant and was able to compensate for a very long time--but as the school workload and even home responsibilities grew it all fell apart. now we are scrambling to fix it...and its not as easy as it sounds once they get older. (school says "she's fine" and her iep has an Occupational Therapist (OT) consult 1X month---a pretty big childrens hospital says way otherwise, and i believe it)

so good luck. its a therapy very worth pursuing....

 

[TerryJ2]

Interesting. Never heard of it. Tell us more!

 

[Mamaof5]

Telepsychiatry is done through video conference. We have this option here in our little town because we don't have a pedi psychiatrist here. So they use resources like teleconferencing technology to communicate with Sick Kids Toronto (best dang hospie for kids in Canada if you ask me along with Erin Oaks for disabled children). The worker with AFS (our pedi mental health unit) is with us when the conference happens to take notes and is a go between (read advocate, and she is awesome) with families and the Sick Kids. doctor W from Sick Kids studied at John Hopkins apparently, she's the top of the top from what doctor J said.

So basically Telepsych is like being in Toronto without being physically there. It does have it's limitations at times (like him not being able to see her eyes for the macrophaging but reading it in a report along with being able to see the brow ridge and eyes spacing through video - spotted it right away). Their systems (computers) are all interlinked too, so when one doctor files a report, with our consent, all of the circle of care professionals can read the reports and see the data. It's great, we're so small a town that we have very few resources in town so this really gives us a leg up and great outside resources at our door steps. I love that they have it. doctor M comes in twice to three times a week from The Suds (Sudbury) to Elliot Lake specifically for the AFS involved families. Community Living and the Health Unit are also on this computer system so one intake gets spread between all the professionals. It's kind of neat the technology they use.

C (our advocate and worker) is awesome, she rocks. Great woman, compassionate and very passionate about her work and "her kids" so to speak. Even the Occupational Therapist (OT) and speech path are on the computer system. The NP from Sick Kids will be seeing her too, as well as the one from Suds (We don't have an MRI machine here in Elliot Lake, or a CT Scan - we have to travel to The Suds or the Sault to get that done). Even Children's Rehab is on the system - a click away from everyone. They really make that technology work well for them.

 

[TerryJ2]

Neat!
So sorry you're so far away, but they are certainly making it easier for people.
And I'm so glad you like your advocate, too.

 

[confuzzled]

that *IS* neat.

just the fact alone that every one can access all the info sold me....i hate nothing worse than repeating myself 9,000 times and trying to remember which person has which report in which chart.

i've never heard of it here in the states, but i'd be right there with you if i had access to it.

 

[confuzzled]

by the way, did they test Big B for FXS too or are you waiting on the outcome of brooklies?

 

[Mamaof5]

by the way, did they test Big B for FXS too or are you waiting on the outcome of brooklies?

Waiting on outcome for Brooklies first. If it does turn out to be FXS or a genetic disorder of any kind, all the kids and us (parents) will be tested as well. She's the only one that has the physical attributes but attributes do not need to be present to be a carrier of the genetic disorder. Eventually we will all be tested.