Ben has his neurology appointment tomorrow!

Purrrfect433

we're in the process of having him evaluated for Autism, ADHD, learning disabilities etc. His regular pediatrician referred us to a neurologist and I'm really looking forward to getting the ball rolling on this. We know that if he does fall on the spectrum, he's very highly functioning. This is why we're going the medical-evaluation route before having him evaluated by his school district, just in case anyone was wondering. That's our next step, but our district is notorious for trying to deny services to high-functioning children, so we want to make sure we have some "proof" before they step in and start offering services. It also helps us be able to get everything our insurance provides.

 I never in a million years thought we'd be going down this road. Truth be told, I've been really stalling on getting his definitive diagnosis because I just really hoped he'd outgrow it. I'm overwhelmed by all the different possibilities. Anyway, wish us luck tomorrow!  

belle204

GL

EMT

((HUGS)), mama! It's great that you are pursuing getting him the help he needs.

I know we've talked about it in the past. But what is it you are concerned about?

jettagurl

GL! i hope you get some answers. Hugs to you.

Purrrfect433

Several things, E. His original Sensory Processing Disorder seems to be the tip of the iceberg. Basically, we're wondering if he has Asperger's, PDD-NOS(Pervasive Developmental Delay, not otherwise specified), ADHD comorbid with an anxiety disorder, Central Auditory Processing Disorder, speech delays to name a few. It's really overwhelming to say the least!

EMT

Wow, that's a mouthful!

I bet this is hard . But you know you are doing the right thing and he will thrive once he gets the help he needs. You may be sick of talking about the details but if you want to "talk"; I'm here!

I'll be thinking about you guys tomorrow.

Take care of yourself during all this too!!

Hooray2005

Hope the appointment tomorrow begins to give you some more information about what's happening for Ben and how to best help him.

If the neurologist doesn't specialize in developmental disorders (many don't), be sure to ask him/her for a possible referral to a developmental pediatrician and/or pediatric neuropsychologist for further developmental testing - these are the diagnostic "experts/specialists" (more so than neurologists, typically).  I'd do it in addition to or before the school district so you know what you're dealing with and can push hard for the services he needs.    Know, though, that the waiting lists for these specialists can be months long, but are very helpful/essential when you're trying to tease apart what's going on.

Hugs!!!  

Purrrfect433

Hooray2005:

Hope the appointment tomorrow begins to give you some more information about what's happening for Ben and how to best help him.

If the neurologist doesn't specialize in developmental disorders (many don't), be sure to ask him/her for a possible referral to a developmental pediatrician and/or pediatric neuropsychologist for further developmental testing - these are the diagnostic "experts/specialists" (more so than neurologists, typically).  I'd do it in addition to or before the school district so you know what you're dealing with and can push hard for the services he needs.    Know, though, that the waiting lists for these specialists can be months long, but are very helpful/essential when you're trying to tease apart what's going on.

Hugs!!!  

Thank-you for the tip, Hooray! We are on a waiting list for the developmental pediatrician in the medical group that the neurologist is part of. From what I understand, he does specialize in developmental disorders but obviously, like you mention, it will only be a piece of the puzzle. I never in a million years thought we'd be going on this insane "Developmental Delay Scavenger Hunt".

Off to find a pediatric neuropsychologist that takes our insurance...

skippy2310

I'll be thinking about you guys tomorrow! Hopefully you get some answers soon and Ben can get all of the services he needs/deserves. Big hugs to you all!

docmay25

Good Luck with everything.  Having been thru all this for the past 6 years with my ds, I know how overwhelming it can be trying to get answers.  My ds has a list of diagnosises...but is also very high functioning.  I am happy that he is high finctioning but it is frustrating because he gets no services.  Sounds like my ds has some similiar issues as yours, so if you ever need to talk I'm always here.

r9stedt

GL to Ben!    I hope you get the answers you are looking for!

#6

Hugs lady!  I'll be thinking/praying for both of you tomorrow.  Keep us updated.  

Glendi2.0

Purrrfect433:

we're in the process of having him evaluated for Autism, ADHD, learning disabilities etc. His regular pediatrician referred us to a neurologist and I'm really looking forward to getting the ball rolling on this. We know that if he does fall on the spectrum, he's very highly functioning. This is why we're going the medical-evaluation route before having him evaluated by his school district, just in case anyone was wondering. That's our next step, but our district is notorious for trying to deny services to high-functioning children, so we want to make sure we have some "proof" before they step in and start offering services. It also helps us be able to get everything our insurance provides.

 I never in a million years thought we'd be going down this road. Truth be told, I've been really stalling on getting his definitive diagnosis because I just really hoped he'd outgrow it. I'm overwhelmed by all the different possibilities. Anyway, wish us luck tomorrow!  

You're very smart to get private evaluations in place before turning to the school system, because you're right- lots of school systems deny high-functioning ASD kiddos services that would really benefit them. Any supporting evidence you can bring to the table can only help your cause.

And I hear you loud and clear on the "I never in a million years thought we'd be going down this road" train of thought... hell, DD#2 was diagnosed almost 2 years ago, and I still feel that way sometimes. In hindsight, though, her diagnosis was the best thing we could've asked for- she's made HUGE strides since receiving more intensive and appropriate interventions, and we've learned how to support and help her too.

Good luck!

tammy79

Good luck, sending you lots of good thoughts and prayers. We just through all this with DS #1 back in November, it was so so hard, but at the same time it was good to finally have answers. 

JellymanKelly

Purrrfect433:

 I never in a million years thought we'd be going down this road. Truth be told, I've been really stalling on getting his definitive diagnosis because I just really hoped he'd outgrow it. I'm overwhelmed by all the different possibilities. Anyway, wish us luck tomorrow!  

 

Good luck. We are in the same boat with my 5 year old. He's been back and forth. He'll be "fine" for 6 months or so, and then the red flags will all start to pop back up again. Now that we are getting into the age where higher-functioning kids usually get diagnosed, we're headed back into the process again. I, too, have been hoping it was just immaturity and he'd grow out of it, but some of the issues seem to be getting worse rather than better. I won't say I hope Ben isn't diagnosed with anything, because you're his mom and if you see things in him, then I know you want answers as to what those "things" point to. I hope they're able to tell you what's wrong, and that it's something "easy" that therapy can help with.

neesernicole

big hugs to you! i'll be thinking of you guys!

AnneUCSB

E- I am sorry you are going through all of this and good luck to you.  I hope you get answers soon.  I would urge you to contact the Children's Health Council (in Palo Alto near Stanford) or The Development and Behavior Unit Follow-Up Clinic at LPCH for an evaluation.  They have a multi-disciplinary team made up of clinical psychologists, developmental pediatricians, PTs, OTs, SLPs, etc. who wil eval Ben and give you a comprehensive assessment and feedback.  IMO, it's the best resource in this area.