Diagnosis! - Mothering Forums

Forum Jump: 
 
Thread Tools
#1 of 10 Old 04-23-2009, 11:24 AM - Thread Starter
 
lotusdebi's Avatar
 
Join Date: Aug 2002
Location: Facebook
Posts: 6,653
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
We found out two years ago that my older son has SPD. He's primarily a sensory seeker, with auditory defensiveness. Over the past two years of OT, I decided that SPD wasn't explaining everything that I was seeing. We scheduled an evaluation with a developmental pediatrician, which occurred this month. We just got the results yesterday. Those of you with experience in this, please share your thoughts on the following:

The dev ped diagnosed DS1 with high functioning autism spectrum disorder because he has impairments in communication and social interactions, and has restricted or repetitive activities or interests. She says he currently functions more like a child with Asperger's. But, she didn't diagnose him with Asperger's because his early language wasn't normal. He went through a period between ages 1 and 2 when he lost a lot of words that he had been saying, and didn't speak any new words. He started learning new words again at 23 months. She said that blip in his language acquisition was the only thing that kept her from diagnosing Asperger's, but that his symptoms appear more like Asperger's.

The dev ped also said that DS1 has symptoms that could meet the criteria for ADHD, predominantly hyperactive-impulsive type. But, she doesn't want to diagnose him with that yet because he has other contributing factors like sensory-seeking and anxiety which can mimic ADHD. She plans to look at that possibility in the future after we try some treatments.

The dev ped has ordered bloodwork to check into celiac disease, PANDAS, zinc, vitamin D, and maybe iron. She suggested some urine tests as well: peptide testing for casomorphin and gliadorphin, and organic acid and dysbiosis testing to look yeast and Clostridia and measure markers of detoxification abnormalities and nutritional deficiencies. Insurance won't cover the urine tests, so we haven't decided on them yet. She'd also prefer to check Vitamin A, but the lab my insurance covers doesn't do an adequate test for that, in her opinion.

She recommended that we give DS1 magnesium and GABA for now (first mag, then GABA when we're at the goal dose of mag. Then we're going to look at magnesium sulfate lotion to clear phenols. After the blood testing, she may recommend: essential fatty acids, 5-HTP, zinc and/or Vitamin D, change to a more complete multivitamin, and digestive enzymes to digest casein and gluten. She's also recommending play therapy to address his social skills, oppositional behaviors, anxiety, etc. And we may want to look into getting a speech-language eval for articulation and possible processing and word retrieval issues. We're to continue with OT and giving melatonin.

Any thoughts on any of this? It's a lot of info, but thankfully all on paper so I can reread it. I expected some sort of spectrum diagnosis, so I'm fine with that. Just curious about the supplements and blood tests and all the other stuff.
Thanks!

You can find me on Facebook. PM for info.
lotusdebi is offline  
#2 of 10 Old 04-23-2009, 12:45 PM
 
sbgrace's Avatar
 
Join Date: Sep 2004
Posts: 9,213
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Wow. That's a lot of suggestions compared to what we got on diagnosis. The urine tests for dysbiosis and organic acids (we did metametrix) were really helpful here. Worth the money. Our insurance did reimburse a portion for us though. It's good in my opinion to look at underlying issues.

It sounds like a really thorough assessment.

Rachelle, mommy to 8 year old boys! 

My Blog-free homeschooling finds and my lesson plans and link to the new User Agreement

sbgrace is offline  
#3 of 10 Old 04-23-2009, 01:44 PM - Thread Starter
 
lotusdebi's Avatar
 
Join Date: Aug 2002
Location: Facebook
Posts: 6,653
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Thanks for the feedback!
The urine tests are $110 and $240 (not sure which is how much), and the doc said that our insurance won't pay for them. We had to pay out of pocket for the eval, and will have to pay OOP for the follow-up appointments, so I don't know how we can squeeze out additional $$$ for the urine tests, but I'll keep them in mind if we can scrape up the cash. We definitely want to look at all the possible underlying issues and treat accordingly.
I'm pretty happy about the thouroughness of the report, and about having a plan to follow now. I've felt so lost and overwhelmed with my son's behaviors for so long...

You can find me on Facebook. PM for info.
lotusdebi is offline  
#4 of 10 Old 04-23-2009, 04:31 PM
 
JessSC's Avatar
 
Join Date: Jan 2007
Posts: 533
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
My son's diagnosis is very very similar, but I agree that you got a lot more advice than just a diagnosis!
JessSC is offline  
#5 of 10 Old 04-23-2009, 10:16 PM - Thread Starter
 
lotusdebi's Avatar
 
Join Date: Aug 2002
Location: Facebook
Posts: 6,653
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I'm happy to get the advice, rather than shell out more money for it and have to wade through so much information myself. We'll see if any of this stuff helps!

You can find me on Facebook. PM for info.
lotusdebi is offline  
#6 of 10 Old 04-23-2009, 10:42 PM
Fay
 
Fay's Avatar
 
Join Date: Sep 2005
Location: Venus
Posts: 1,729
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Sounds like the ped is very thorough.

Play therapy is what helped my DS1 the most. I recommend Dr. Greenspan's book "Engaging Autism." We also do some supplements & enzymes, but dietary restrictions did nothing for him. Each person on the spectrum has different needs and responds to different therapies.

"Isn't life a series of images that change as they repeat themselves?" - Andy Warhol
Fay is offline  
#7 of 10 Old 04-23-2009, 11:08 PM
 
Lollybrat's Avatar
 
Join Date: Sep 2008
Posts: 505
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by lotusdebi View Post
The dev ped diagnosed DS1 with high functioning autism spectrum disorder because he has impairments in communication and social interactions, and has restricted or repetitive activities or interests. She says he currently functions more like a child with Asperger's. But, she didn't diagnose him with Asperger's because his early language wasn't normal. He went through a period between ages 1 and 2 when he lost a lot of words that he had been saying, and didn't speak any new words. He started learning new words again at 23 months. She said that blip in his language acquisition was the only thing that kept her from diagnosing Asperger's, but that his symptoms appear more like Asperger's.
My son also presents as very Asperger-like, does not qualify for that diagnosis due to his early language delays. His current medical diagnosis is "PDD-NOS with features of Hyperlexia and Dyspraxia". There is a lot of debate between where the lines fall between High Fuctioning Autism, Aspergers, and PDD-NOS. My son's psychologist told me that the when the new DSM-V comes out in 2012, these differences may be clarified. It can get confusing, but in reality, whether a child is classified as Aspie, HFA, or PDD-NOS may not really matter as long as you are able to figure out what works best for your child.

My son has responded well to speech therapy, OT, and a mix of ABA/VB and Floortime. We also do Omega-3 and Vitamin B suppliments. He's made some remarkable progress over the past couple of years.

Good luck on finding what works for your son! Sometimes it takes a while to find the right combination of elements, so try to be patient with him and with yourself in the meantime.

Lolly
Mom to an amazing little guy, age 9 (Autism, Hyperlexia, Dyspraxia, Albinism, Chromosome Microdeletion)

Lollybrat is offline  
#8 of 10 Old 04-24-2009, 12:00 AM
 
RachelMMN's Avatar
 
Join Date: Dec 2007
Posts: 1
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Really second the play therapy idea. That's good for so many reasons. Sorry I don't have much to add wrt to the medical stuff, but at least it sounds like your doctor is really on the ball.
RachelMMN is offline  
#9 of 10 Old 04-24-2009, 02:13 PM - Thread Starter
 
lotusdebi's Avatar
 
Join Date: Aug 2002
Location: Facebook
Posts: 6,653
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Thank you all very much for your recommendations! I really appreciate it!

You can find me on Facebook. PM for info.
lotusdebi is offline  
#10 of 10 Old 04-24-2009, 03:37 PM
 
Roar's Avatar
 
Join Date: May 2006
Posts: 4,540
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Wow - that sounds like a really thorough developmental pediatrician. You are lucky. I agree it is worthwhile to start with investigating underlying biochemical issues and then follow up with other therapies.
Roar is offline  
Reply

Quick Reply
Message:
Drag and Drop File Upload
Drag files here to attach!
Upload Progress: 0
Options

Register Now

In order to be able to post messages on the Mothering Forums forums, you must first register.
Please enter your desired user name, your email address and other required details in the form below.
User Name:
If you do not want to register, fill this field only and the name will be used as user name for your post.
Password
Please enter a password for your user account. Note that passwords are case-sensitive.
Password:
Confirm Password:
Email Address
Please enter a valid email address for yourself.
Email Address:

Log-in

Human Verification

In order to verify that you are a human and not a spam bot, please enter the answer into the following box below based on the instructions contained in the graphic.



User Tag List

Thread Tools
Show Printable Version Show Printable Version
Email this Page Email this Page


Forum Jump: 

Posting Rules  
You may post new threads
You may 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
Trackbacks are On
Pingbacks are On
Refbacks are Off