ClothDiaperNation
 

Go Back   ClothDiaperNation > The Parents Place > Special Needs

Notices

Reply
 
Thread Tools Display Modes
  #1  
Old 03-25-2015, 09:22 PM
ciles ciles is offline
SuperMom!
 
Join Date: Jul 2010
Location: Near the beach, Florida
Posts: 13,636
My Mood: Breezy
Rep Power: 5439
ciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond repute
Default Developmental Pediatrician

At our neurosurgery appointment the other day (new neurosurgeon since we've moved and this area has a massive childrens hospital that's well rated) I asked the neurosurgeon about who to see for a diagnosis of NVLD for Kasey. He said they already had me on the schedule to see a developmental pediatrician at the spinal defects clinic on August 14th. We've never seen one before and I'm not sure what to expect/how to frame my questions.

this guy apparently has a very very VERY long wait list if you try to see him at his practice- but kids who go to the spinal defects clinic get to see him much quicker/easier. we'll also be seeing some other specialists in that clinic as well. But I'm mainly worried about how to get the process started of getting this diagnosis.

This is the info on the diagnosis we need in case anyone is interested: NVLD

Kids with sB and hydro commonly have it and we've suspected it for awhile.
__________________
Marie
Wife to E
and Mama to:
Kasey 9Kora 6
Renly 4 Rowan 1
  #2  
Old 03-26-2015, 12:59 AM
HugnKiss HugnKiss is offline
i'm just a weird girl
AKA: mia&seansmom
 
Join Date: Dec 2008
Location: a million miles away
Posts: 14,700
My Mood: Tired
Rep Power: 0
HugnKiss has a reputation beyond reputeHugnKiss has a reputation beyond reputeHugnKiss has a reputation beyond reputeHugnKiss has a reputation beyond reputeHugnKiss has a reputation beyond reputeHugnKiss has a reputation beyond reputeHugnKiss has a reputation beyond reputeHugnKiss has a reputation beyond reputeHugnKiss has a reputation beyond reputeHugnKiss has a reputation beyond reputeHugnKiss has a reputation beyond repute
Default

that sounds like a great doctor to get in with!!
__________________
I'm Amanda I'm married to Michael
We made offspring
Sean-9
Mia-8-
Dylan-4
  #3  
Old 03-26-2015, 02:49 AM
Brandi's Avatar
Brandi Brandi is offline
I love penises and nothing but penises
AKA: T&E's Mama
 
Join Date: Feb 2010
Location: South Texas
Posts: 31,172
My Mood: Fine
Rep Power: 8963
Brandi has a reputation beyond reputeBrandi has a reputation beyond reputeBrandi has a reputation beyond reputeBrandi has a reputation beyond reputeBrandi has a reputation beyond reputeBrandi has a reputation beyond reputeBrandi has a reputation beyond reputeBrandi has a reputation beyond reputeBrandi has a reputation beyond reputeBrandi has a reputation beyond reputeBrandi has a reputation beyond repute
Default

I hope it all goes well.
__________________
No one else will ever know the
strength of my love for you. After
all, you're the only one who knows
what my heart sounds like from the inside.
Tommy (04/06) Emma (01/10) & Brenna (03/15)
  #4  
Old 03-26-2015, 08:36 AM
RowBabyRow's Avatar
RowBabyRow RowBabyRow is offline
can bring the best porn
 
Join Date: Mar 2009
Posts: 11,609
My Mood: Dreaming
Rep Power: 4955
RowBabyRow has a reputation beyond reputeRowBabyRow has a reputation beyond reputeRowBabyRow has a reputation beyond reputeRowBabyRow has a reputation beyond reputeRowBabyRow has a reputation beyond reputeRowBabyRow has a reputation beyond reputeRowBabyRow has a reputation beyond reputeRowBabyRow has a reputation beyond reputeRowBabyRow has a reputation beyond reputeRowBabyRow has a reputation beyond reputeRowBabyRow has a reputation beyond repute
Default

I would just bring it up. Our specialists have always been very open to our research and suggestions. Good luck!
__________________
Sarah Stellan Chasing after three chickadees: C. 04/08 , G. 02/11, and T. 05/14
  #5  
Old 03-28-2015, 04:46 PM
dubhreubel dubhreubel is offline
My mind is in a bad, bad place.
 
Join Date: Apr 2009
Location: Ontario, Canada
Posts: 12,449
Rep Power: 0
dubhreubel has a reputation beyond reputedubhreubel has a reputation beyond reputedubhreubel has a reputation beyond reputedubhreubel has a reputation beyond reputedubhreubel has a reputation beyond reputedubhreubel has a reputation beyond reputedubhreubel has a reputation beyond reputedubhreubel has a reputation beyond reputedubhreubel has a reputation beyond reputedubhreubel has a reputation beyond reputedubhreubel has a reputation beyond repute
Default

I just ask outright about a specific diagnosis and explain why I'm asking about it. I've almost always had good results that way.
__________________
Steph, Engaged to my sweetie.
C (12/2010) and D (01/2009) call me Mommy.

Make shopping more fun!:
GreatCanadianRebates
  #6  
Old 03-29-2015, 01:45 AM
ciles ciles is offline
SuperMom!
 
Join Date: Jul 2010
Location: Near the beach, Florida
Posts: 13,636
My Mood: Breezy
Rep Power: 5439
ciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond repute
Default

I talked to a friend who has seen this guy before and she said his bedside manner sucks but he's excellent at the stuff we need him for and we shouldn't have a problem getting the testing. that makes me feel better
__________________
Marie
Wife to E
and Mama to:
Kasey 9Kora 6
Renly 4 Rowan 1
  #7  
Old 03-29-2015, 02:13 AM
MeganPaige MeganPaige is offline
Deep I like it deep.
 
Join Date: Jan 2012
Location: Vancouver Island
Posts: 5,062
My Mood: Cheerful
Rep Power: 1108
MeganPaige has a reputation beyond reputeMeganPaige has a reputation beyond reputeMeganPaige has a reputation beyond reputeMeganPaige has a reputation beyond reputeMeganPaige has a reputation beyond reputeMeganPaige has a reputation beyond reputeMeganPaige has a reputation beyond reputeMeganPaige has a reputation beyond reputeMeganPaige has a reputation beyond reputeMeganPaige has a reputation beyond reputeMeganPaige has a reputation beyond repute
Default

What I've discovered is doctors with horrible bedside manner are usually the best in their field. Go in knowing that and present your questions as, "I've heard this .... what do you think?" Making sure that he knows you're after his expertise, not questioning him, even if you really are. That usually makes them more receptive.
__________________
~Megan
WOHM mama to Everest (05.30.05) & wifey to Bryan

“Too many of us are not living our dreams because we are living our fears.” ~Les Brown

Autocorrect likes to change names on me, I'm sorry if I call you something else.
  #8  
Old 03-29-2015, 03:39 AM
bellamama bellamama is offline
Where's that title fairy?
 
Join Date: Jan 2009
Location: WI
Posts: 4,225
My Mood: Amazed
Rep Power: 0
bellamama has a reputation beyond reputebellamama has a reputation beyond reputebellamama has a reputation beyond reputebellamama has a reputation beyond reputebellamama has a reputation beyond reputebellamama has a reputation beyond reputebellamama has a reputation beyond reputebellamama has a reputation beyond reputebellamama has a reputation beyond reputebellamama has a reputation beyond reputebellamama has a reputation beyond repute
Default

Quote:
Originally Posted by dubhreubel View Post
I just ask outright about a specific diagnosis and explain why I'm asking about it. I've almost always had good results that way.
I did not have a good experience doing that. They seemed offended and nearly laughed at me. They spent almost no time with my dd and didn't bother to complete any testing because my dd was uncomfortable and got upset. My advice is to be very clear with the struggles you are facing and make sure you push them to be thourough. Otherwise it's a huge waste of time(and ime, money)

I had better luck with phycologists that specialize in the area needed. In our case autism, but the school has labeled her with autism/nvld.
__________________
sara Mom to 4
Bella 5/19/05 Mia 9/1/07 Angel Baby Avalon 10/31/13 & Newest Babe Gavin 10/24/14
  #9  
Old 04-01-2015, 07:41 PM
ciles ciles is offline
SuperMom!
 
Join Date: Jul 2010
Location: Near the beach, Florida
Posts: 13,636
My Mood: Breezy
Rep Power: 5439
ciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond repute
Default

I've heard some people say that when they do get the NVLD diagnosis its actually coded as PDD-NOS (I think that's right?) This is just a whole new field for us- I'm going to look into some neuropsychs as well and see what we can find.
__________________
Marie
Wife to E
and Mama to:
Kasey 9Kora 6
Renly 4 Rowan 1
  #10  
Old 04-01-2015, 07:51 PM
BeautifulChaos BeautifulChaos is offline
makes me think Vagazzel! in the Shamwow guy voice
AKA: Rannensmom
 
Join Date: Dec 2008
Location: Washington State
Posts: 6,801
My Mood: Sad
Rep Power: 0
BeautifulChaos has a reputation beyond reputeBeautifulChaos has a reputation beyond reputeBeautifulChaos has a reputation beyond reputeBeautifulChaos has a reputation beyond reputeBeautifulChaos has a reputation beyond reputeBeautifulChaos has a reputation beyond reputeBeautifulChaos has a reputation beyond reputeBeautifulChaos has a reputation beyond reputeBeautifulChaos has a reputation beyond reputeBeautifulChaos has a reputation beyond reputeBeautifulChaos has a reputation beyond repute
Default

Quote:
Originally Posted by ciles View Post
I've heard some people say that when they do get the NVLD diagnosis its actually coded as PDD-NOS (I think that's right?) This is just a whole new field for us- I'm going to look into some neuropsychs as well and see what we can find.
PDD-NOS no longer exists in the diagnostic manual. I don't know about NVLD
__________________


Momma to:
Wide-eyed Dreamer (10)

Calico Kid (5)

The Newbie May 28, 2016


Author of Ring of Fire





  #11  
Old 04-01-2015, 07:55 PM
mama2myangels09 mama2myangels09 is offline
Where's that title fairy?
 
Join Date: Jan 2010
Posts: 1,740
My Mood: Cloud_9
Rep Power: 0
mama2myangels09 has a reputation beyond reputemama2myangels09 has a reputation beyond reputemama2myangels09 has a reputation beyond reputemama2myangels09 has a reputation beyond reputemama2myangels09 has a reputation beyond reputemama2myangels09 has a reputation beyond reputemama2myangels09 has a reputation beyond reputemama2myangels09 has a reputation beyond reputemama2myangels09 has a reputation beyond reputemama2myangels09 has a reputation beyond reputemama2myangels09 has a reputation beyond repute
Default

PDD-NOS is listed as straight autism now. Don't know anything about NVLD
~~~~~~~
Just found this http://www.med.umich.edu/yourchild/topics/nld.htm
__________________


Last edited by mama2myangels09; 04-01-2015 at 07:56 PM. Reason: Automerged Doublepost by CDN
  #12  
Old 04-01-2015, 08:04 PM
ciles ciles is offline
SuperMom!
 
Join Date: Jul 2010
Location: Near the beach, Florida
Posts: 13,636
My Mood: Breezy
Rep Power: 5439
ciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond repute
Default

hmmm- its crazy how all over the place things are on the NVLD boards and across the US. I've been reading on them a lot for awhile now to prepare myself for the process but its so different for everyone.

NVLD is a super common thing among kids with Spina Bifida/Hydrocephelus/Chiari Malformation. Otherwise I would have never even known to watch for it. She's got a good amount of the symptoms but then some are the complete opposite of her. Of course, they do say they can't even beginning contemplating testing for it until the age she is now or older since its a progressive thing.
__________________
Marie
Wife to E
and Mama to:
Kasey 9Kora 6
Renly 4 Rowan 1
  #13  
Old 04-01-2015, 08:49 PM
bellamama bellamama is offline
Where's that title fairy?
 
Join Date: Jan 2009
Location: WI
Posts: 4,225
My Mood: Amazed
Rep Power: 0
bellamama has a reputation beyond reputebellamama has a reputation beyond reputebellamama has a reputation beyond reputebellamama has a reputation beyond reputebellamama has a reputation beyond reputebellamama has a reputation beyond reputebellamama has a reputation beyond reputebellamama has a reputation beyond reputebellamama has a reputation beyond reputebellamama has a reputation beyond reputebellamama has a reputation beyond repute
Default

Nvld is basically aspergers.
__________________
sara Mom to 4
Bella 5/19/05 Mia 9/1/07 Angel Baby Avalon 10/31/13 & Newest Babe Gavin 10/24/14
  #14  
Old 04-02-2015, 02:59 PM
ciles ciles is offline
SuperMom!
 
Join Date: Jul 2010
Location: Near the beach, Florida
Posts: 13,636
My Mood: Breezy
Rep Power: 5439
ciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond reputeciles has a reputation beyond repute
Default

Quote:
Originally Posted by bellamama View Post
Nvld is basically aspergers.
they are very much alike symptom wise. The difference is that NVLD isn't as severe as aspergers. We mainly will be looking for a diagnosis so I know how to help her more learning wise.
__________________
Marie
Wife to E
and Mama to:
Kasey 9Kora 6
Renly 4 Rowan 1
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT. The time now is 10:14 AM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2017, vBulletin Solutions, Inc.
Ad Management plugin by RedTyger