April 20, 2008

Pervasive Developmental Disorder – Almost Specified

So this week I got the best phone call ever.

Chandler is currently going through reevaluation by the school psychologist Dr. Guy, as I will call him, as it had been three years since his last formal evaluation and the state believes it is time. Dr. Guy did the testing over a few days and in the middle, called me to check in and ask some questions and see what kind of things I wanted him to look for while he was at work on my boy.

We talked for a while and he described what he had seen so far. (I usually don’t tell that I have a background in mental health or that we are doing biomed or anything of much at all so as not to contaminate the process.) I could tell that he had gotten a pretty good handle on who Chandler was (you can always tell who ‘gets’ your kid and who doesn’t) and I asked him for a few specific things that might help me gauge his long term progress over the years.

Then this part of the conversation happened:

Dr. Guy: Well your son is autistic, but he doesn't have autism.

Me: Explain that to me.

Dr. Guy: Well there is another diagnosis called Pervasive Developmental Disorder-Not Otherwise Specified that... blah blah blah... (I have no idea what he said after that because my heart jumped into the air and I was trying not to burst into tears on the phone)

Me: So you think he has PDD?

Dr. Guy: Yes. While he has problems with speech and receptive language and socialization, I don't see any of the behavioral issues, stims, problems with transitions... blah blah blah... again could not hear him because all I could think was, "Did he really just say that? Don't get too excited because he might not really have said that."

Me: So if you walked into the class room and didn't know he had ever had any diagnosis, you would pick him out as a child with PDD?

Dr. Guy: (Now being very nice and trying to explain to me in very basic terms because clearly I was not understanding him as I kept asking him the same simple question over and over). Yes. Have you been in the autism class and gotten a chance to see some of the other children? They are very different from Chandler, much lower functioning. Have you noticed how they do things like _________? That is more of what true autism looks like.

Me: BAAAWWWAAAAAWWWWWWW!!!!!

Dr. Guy: Ma'am?

I explained that when we started with Chandler, he didn’t make eye contact or answer to his name, and that he was a stimming machine, flapping and spinning and toe walking and walking in positions that I could not do and hold my balance and turning the big wheel upside down to spin the tires and spinning the hot wheels car tires and watching the spinning fans. Chandler’s first eval, which was 6 months after we started therapy and biomed and after he was making eye contact and answering to his name, put him at moderate to severe autism.

Then he understood why I was so emotional.

When I asked about what specific stims he was seeing, he replied that he hadn’t seen any at that point. I told him that he still had one significant one, but I didn't tell him what it was, so see if he could see it as he continued the eval.

He never saw it, and then I realized that I had not seen it in a while either.

Chandler’s last SIB was that when he gets too frustrated, or even too frenzied (sometimes our spontaneous dance parties in Mommy’s office get a little crazy) he bites down on the first two fingers on his right hand. Really hard. His little fingers have big welts on them and I can always tell what kind of a day he has had when he was not with me by looking at his fingers to see how swollen they were.

I had not checked them in a while (he just has not been getting that upset lately), and when I looked at them, they were almost completely healed! The welts are gone, the callouses are gone and the skin is soft. It looks like it has been many weeks since he has bitten himself.

Gone, Gone, Gone!!

“Ginger, does your son have any self-injurious behavior?”

“Why, no. He does not do that any more. That was so 2007. Now his two fingers are virtually indistinguishable from their peers”.

I wanted to write about this right away, but thought better of it as the poor man had not even finished the testing, which turned out to be wise because, after talking with Chandler’s teacher, she pointed out a few subtle stims that he still has (damn that woman, if she wasn’t so “perceptive” and “right” and such a “great teacher” and so “completely invested in my child”, I would give her a piece of my mind, boy howdy).

Dr. Guy (also impressed with him as he calls families on his weekends to work on their kids assessments, who does that?) settled on a formal diagnosis of:

299.0 Autistic Disorder (Rule Out Pervasive Developmental Disorder, Not Otherwise Specified)
315.32 Mixed Receptive-Expressive Language Disorder.

He also did an intelligence assessment that showed, big surprise, a 40 point gap between verbal and non-verbal IQ.

He also noted that Chandler had no significant behavioral issues. So now we are down to just dealing with the talking part.

So I know this isn’t formally loosing his diagnosis yet, but I am still really excited about it because his first impression was that he didn’t have ‘autism’ and because three years ago the psychologist who tried to do an IQ assessment gave up because Chandler would not interact with him.

I am going to stay on top of this and when the last few little behavioral quirks are gone, and he firmly moves into PDD land, with the approval and agreement of his crack team of specialists, I will shout it from the top of someplace very, very high.

So stay tuned.

Now let’s all take a minute to look at my beautiful baby:



At chelation last week Webster went to take Chandler to get a sticker out of the sticker bucket while I talked to the doctor. Apparently we talked too long because Webster gave Chandler 46 stickers. A bullet could not have penetrated that shield of stickers.

16 comments:

MDMOM said...

Oh Ginger! I am sooo thrilled for you guys!! That is awesome. Please continue to shout it from the rooftops that there is hope for our kids to get well.

Chandler is so beautiful. That red hair is great. I pay good money and mine still doesn't look like that!

K Fuller said...

When I read your latest entry it made me feel so included!
We are part of a club we never asked to be members of. It is so frustrating to deal with people who have not known our children from the beginning of our journey, so that they can see how far they have come! Keep up your good work. Our son is 15, and we are still fighting to pull him out of the abyss. Below is my latest exchange with a newbie to our sons journey.I don't think this person anticipated my response to her simple, but insulting question!!!

....The way that you asked me, "Well, can he make a sandwich?" is just too much. Yes, he can make a sandwich. Is it a mess? Yes! Your question leaves me with the feeling that you think that Nick's lack of daily living skills is some kind of huge failure on our part.

When Nick regressed into Autism, he was unable to ask for a sandwich or a glass of water or a cookie. I think that you need you to understand what we have been doing while he has not learned to make the perfect sandwich. We did not find ourselves much worried about Nick's lack of daily living skill when he fell into the abyss. We made him reconnect with us, and I do mean made him. This is a child that PECS was recommended for. We pulled language out of him with constant painful, emotional, and very hard work. We spent hours and hours getting Nick interested in something other than his fingers and lining things up. We pulled good behavior out of him with hours and hours of constant and consistent behavior modification, so that he does not run out of your classroom or use foul language at you. With hours and hours of behavior modification, Nick will not turn over a desk in your classroom, or throw things at you. He will not raise his fist to others and hit them. Nick is able to sit at a desk and try to learn, no matter how repetitious or monotonous it is, or how uninterested he is in the work before him. He understands that this is his job. No, he can't use a measuring cup or the stove top but, I'll take him without culinary skills.
Please teach our son to read......

Kelli Ann Davis said...

Agreed.

He is one of the most beautiful red-headed children I have ever laid eyes on! (Hannah Poling is another that comes to my mind :-)

BTW: I had carrot red hair when I was small. Not anymore.

Kelli

erin lindsay neal said...

Hi Ginger! Forgive me if I missed it, I am new(er) to reading your blog...how long have you been chelating/treating? I'm just now looking into the process (I formerly was a blind faith believer of my peds and government, however that has recently changed.) Do you blog what all you are doing? My son is almost 11 and ASD, SID, so not sure what I need to do. Haven't found a DAN! doctor in Georgia, not that we can afford it right now, so just trying to figure out if it's worth my while or not. I figure getting him to eat something other than processed cheese and ice cream can't hurt ;). Most recovery stories I've found talk about nonverbal, more severe Autism. Do you know of any good information that would specifically help us? Just curious!

thanks, keep up the good writing!

kelly said...

What a happy post to read. I am thrilled for Chandler's progress! I admire your family's hard work, as well as your willingness to continue to share your story with the world. We are listening and learning so much. Thank you!

Tom said...

Ginger,

YAY!

It's nice to get some validation from the rest of the world. It's very, very nice, and kind of rare.

I'm really happy for you!

Erin Lindsay, Ginger has posted everything, everything, everything--just go back and read. :) It takes time, but some things you can do right away!

First: www.gfcfdiet.com

Go there. Start the diet. You will not be sorry. (I can tell because of what your son eats now.)

We did this diet for years--gluten-free, casein-free, soy-free, no deeply colored foods; it helps so many kids. But some kids need other diets. There's also the SCD. The GFCF diet (plus lots of other stuff) worked wonders for us.

Next: www.generationrescue.com

Find a rescue angel near you. (I'm listed in Ohio! You can write to me!)

It's so worth helping your child to feel better, mentally and physically. So I want to encourage you.

Terri Lewis

alexosmommy said...

Ok, Ginger you've done it! I'm bawling in my office. YES YES YES! I've been choking back tears in public when school staff and parents tell me how wonderful my son is doing and that they just knew he'd outgrow autism! He started chelation last September and has had a stellar year in 3rd grade. He finally, the first time in his life ... has energy (perhaps a little mito dysfunction???? Ya think?).

God bless you for all you do to help Chandler AND educate the world on so much! Your writings are great! Chandler looks AMAZING! I laughed through my tears at the stickers ... I have to tell you if one more person offers my son a sticker, he'll lose it! After 3 years of therapy and stickers ... he's all done with stickers LOL!!!

You so made my day!

Kathy

Ginger Taylor, M.S. said...

Thanks for all the love and happiness for us!

Chandler is definitely in season of healing right now. We had some cool stuff happen since this, that I will share later it if holds.

Reading success stories is always bitter sweet. They bring both encouragement that progress can be made and grief that it is not our child that is having the breakthrough. This is a crazy life.

Thanks for you concern for my sweet boy and pray for him as you pray for your own kids.

Ginger Taylor, M.S. said...

KF,

I share your frustrations with professionals who don't get it. In our 4 short years on the journey we have had some great experiences (currently) and some where law suits would have been appropriate.

But I love when you find someone who is really invested in your child and knows how to partner with the family.

Thing1Thing2Mom said...

Ginger,

What a gorgeous child! Chandler is absolutely radiant.

Our Amelia is recovering so beautifully. Right now her function is so NT. We are just in a mode of hoping she maintains and that we can finally break the gut cycle.

I have experienced something very spiritual as she has recovered and pray daily that all families affected by autism can experience the recovery Amelia has. I am so glad to hear this is happening for Chandler and your family.

Pamela

erin lindsay neal said...

thanks, Tom. We tried the diet (just at home) and it only lasted a couple of days. He was mad about these "ice cream sandwiches" that were very similar to cardboard...I don't blame him!

will try harder, and dig in this blog more and keep reading!

Sara said...

Ginger,
not like you need another stranger telling you how happy they are for you, but ... I am. As I haven't walked your road, I can't know the full extent of your happiness right now, but I am glad that you do! Keep up the great blog! And thanks for that awesome picture of Chandler.
Sara

Ginger Taylor, M.S. said...

Sara,

I can never get enough of people celebrating with us.

Thank you!

Ginger Taylor, M.S. said...

Erin,

Sorry for taking so long to respond. We started 4 years ago. It has been on and off as we had the cash to do more.

I blog the things that work for him, but usually don't bother writing about what doesn't. If you click on the 'Chandler' tag, you can read all about what has worked for him. But in short...

GFCF/SCD diet, IV CaEDTA chelation, antiobiotics (have not written about that one yet)suppliments: glutathione, zinc, and a whole lot more, Sensory Learning Center, have all worked for him. But every child is different and you guys might have a somewhat different path to healing.

I would encourage you to start by trying the gluten free casein free diet, and adding in the specific carbohydrate diet some time later. You can also put him on a few suppliments that are the big ones that our kids respond to, P-5-P which is B, buffered C, Glutathione, chelated fish oil (Nordic Naturals is my favorite), Kirkman's Spectrum Complete is good.

I would encourage you to get to a DAN! doc as soon as you can, but in the mean time, you can get LOTS of input from other parents on how to start on the yahoo groups (Autism Biomed or BioMed Heads).

Children with Starving Brains is available in my book store on this site, that is a good book to start with.

Email me if you have any questions.

Glad that you guys are going to give it a go! It is exciting when you see your child start to make gains, especially when they become happier kids.

Us said...

Hi I just came across your blog and plan to read it often. I have a little boy who is 32 months old that showed signs of Autism starting at 9 months old. It was painfully obvious by 14 months :(

But we started interventions around 12 months(VB, ST, diet, stopped giving him shots) He has been doing so amazing in the last 8months that we think he can handle entering a typical pre-school this fall without support! language, no problem, play, no problem, attention, checked! referencing, imitating: learning by looking at others, checked, checked, checked!
Ofcourse, there are still some subtle lingering stuff at this point (he is still so young!) but boy do I get you on you being the only one to pick them out.

He has long Auburn hair and the picture of your son just really reached out to me. You are right, he is one beautiful little guy!

Congratulations on your news.

Us said...
This comment has been removed by the author.