Rimland Center

Our visits to the Rimland Center this week were very successful and promising. I went in trying not to expect too much... I thought we'd walk away with a list of labs to have run on Nate and nothing more, so I was pleasantly surprised when much more than that was accomplished.

I liked Dr. Van Dyke a lot. He actually listens! to what parents say! and believes them! We spent the majority of the first appointment giving a more detailed history (does Nate do this? does he not do that? what are his specific stims? diet? physical activity?). I hadn't really thought about it before, but most of Nate's stims are visual in nature (his main one is his obsession with watching things spin). Dr. Van Dyke's own 5-year-old son with autism is the same way, he told us, and he also told us about a new type of therapy I hadn't heard of before: vision therapy using prism lenses. I'm really excited about looking further into this; I'm buying the doc's recommended book, Seeing Through New Eyes.

The doctor also supported and liked our use of enzymes and GFCF diet, since those are usually the first two things he has parents do. We talked about the next steps in Nate's treatment, and we started one the next day, at his second appointment! I was thrilled to be able to start something, to be doing and not just reading/talking.

So, this new treatment is called methylation, and it involves giving Nate a vitamin B12 shot once every three days and adding in three new supplements: DMG, taurine, and folinic acid. The shot is methyl B12 because it's in a form even more usable by the body than the usual B12 shots some people get. I had read about methylation--in fact, I had just finished with the chapter about it in Children with Starving Brains. I've done some reading since then, too (see here, here, and here), and I still don't think I can adequately explain what it is or what it does. However, it helps the majority of children with autism in some way, so it's a good treatment to try first. (And, since it really can't hurt, Dr. Van Dyke likes to try it right away rather than wait for lots of testing that may or may not tell us whether it would be beneficial. I'm all about the doing and not just talking!) This stuff is going to help at a cellular level with things like oxidation/lowering oxidative stress, because "an increased vulnerability to oxidative stress and a decreased capacity for methylation may contribute to the development and clinical manifestation of autism" (James, Cutler, Melnyk, Jernigan, Janak, Gaylor, & Neubrander, here). The benefits should also manifest themselves in behavioral improvement: more social language, more efforts at imaginary play, etc.

With one of the Rimland Center specialists' supervision, Jon gave Nate his first MB12 shot on Friday. I don't think the shot hurt him; I think he cried because he didn't want me holding him still. In the two days after the shot, Nate seemed lethargic, more stimmy, much more whiny, and less cooperative. Hmm. I'm hoping it's his body adjusting the same way it has to the other treatments we've done. Since the shot, I have noticed a couple of positive changes that definitely could be attributed to the MB12: 1) for the first time ever, Nate made up a song and sang it (it was a song about going to the airport when we were on the way there. It had only a couple of words, but it was still cool); 2) he started saying please much of the time without prompting, and today he even said, "yes, ma'am" without my having to tell him to. Cool!

In addition to the MB12, taurine, folinic acid, and DMG, we are going to start several other supplement-type things that we can buy without a prescription. These include a liquid aloe vera to help even more with inflammation and the GI tract, fish oil (not just cod liver oil) for essential fatty acids, and one or two more things I can't remember off the top of my head.

We are going to do a few labs to determine some more about Nate, including whether or not his elevated ammonia levels on a previous test are correct. Some of these labs might indicate what future treatments, like antifungals for yeast overgrowth, we'll try.

Overall, we are so encouraged and excited about all of these treatments and love the Rimland Center.

Christmas trip

We had a really great time in Virginia this past week. This trip was so pleasant, relaxing, and fun, mostly because Nate was in such a better place developmentally compared to last time we were there (July). The plane rides out to VA on 12/23 were surprisingly easy, and we arrived to see my parents' new (to them), beautiful home (it's on the same street as their old house). Nate slept in a twin bed with some chairs pushed against it so it felt like he had a little railing like his bed at home has (funny story to come about this). We had a full, fun Christmas day, and the rest of the trip was spent doing things around the house and spending time together as a family. Here are some of my favorite pictures out of the 200 I took. :)

Nate "winking"


No one noticing Lucy's snack...


Jon's ability to sleep through anything



















Our second night there, we put the children to bed and all watched a movie. My dad went to go to bed, but he came back and asked, "Is Nate supposed to be in the hall?" Nate was asleep in the hall, flat on his back with arms and legs straight, with his blanket wrapped around his head. The next night, I thought Nate might want a little light in the room so I left the bathroom light on when we put him to bed. Hours later, when my sis Lucy was going to bed, she found Nate half asleep on the bathroom floor with his blanket. Poor boy! He did fine the other nights.

Lucy started doing a number of new things this week. She started giving kisses on the trip out there. She also started clapping her hands and clicking her tongue. Yay Luce!

I haven't even mentioned Nate's appointment at Rimland Center, because I'm writing a separate post about that. Here's a preview: it was GREAT.

Merry Christmas

We are having a great time in VA. My parents' new house (they bought a new house down the street from their old one and moved in this month) is really wonderful--spacious and beautiful. Christmas day was very nice, with lots of family and good food.

Today, we had the first of Nate's two Rimland Center appointments. It went really well; I loved the doctor and am so encouraged and excited about what's in store. I'll write more after his appointment tomorrow, where we're starting the next kind of treatment (in addition to diet, enzymes, and the other stuff we're already doing).

In two days

Nate wasn't being very cooperative, but here's a video from this morning.

Fun with videos

It's raining lightly at our house, and I love the sound of it hitting the skylight above our stairs.

Here are some quick cute things!

Lucy thinks it's fun to "clap" Nate's head (and I love that he lets her--even thinks it's funny--and is gentle back to her):



Nate (and me) singing this morning (wait for the end of the song):



Lucy doing this silly face/breathing thing she has started this week:



I just finished putting together a quick look at the progression Nate has made with his speech over the past several months. It's pretty amazing to think about how far he has come:

Sweet times

This morning, we were all playing together in the master bedroom, and I asked Nate what he was holding. He said, "Fwashwight," (it was Jon's keychain flashlight) and then he said, "Show Lucy fwashwight." He walked over, sat on the floor next to Lucy, and pointed the flashlight at his face and said, "Cheese!" It was cute and also a first: he has never wanted to show Lucy anything before. Yay Nate!

I also wanted to document a couple of things he has been doing lately at mealtime:
- the cute way he says applesauce: "applehoss."
- when he eats pancake (gluten free, of course), he will randomly call out words like "sock!" or "cat!" After a few times of him doing that, I realized he was saying that about the pancake and whatever shape he had happened to eat it into.

50 random things about me

I've seen several others write these lists on their blogs, and I thought it'd be fun to do one too. Let's see how long it takes me to think of that many things about me! (I started this list on 11/28, and it started out as "101 random things about me," but I just can't think of any other interesting things, so I'm stopping at 50.)

1. I was born in Little Rock, Arkansas, and lived there until I was 8.
2. I have also lived in Marshfield, Massachusetts (outside of Boston), and 4 cities in Southern California.
3. I consider California my home.
4. I began playing the flute when I was 10 years old. (Still play today.)
5. My favorite food is avocados.
6. I graduated college in 3 years.
7. I sing and play flute on the worship team at my church.
8. I get more nervous singing than I do playing the flute.
9. I pay the bills for our family. (To clarify: Jon makes the money, but I pay the bills!)
10. I have a younger brother, Greg, and younger sister, Lucy. I think I'm a typical oldest child.
11. I love dangly earrings.
12. I have a shoe fetish and could easily buy a hundred pairs if I had limitless funds.
13. I played basketball and softball in high school. I wasn't extremely good at either one but especially not at basketball.
14. I broke my nose playing softball.
15. I also broke my arm in two places while rollerblading when I was 10.
16. I won my school's spelling bee in 5th grade.
17. I would love to be able to have a craft/sewing room one day. The main reason I haven't scrapbooked in well over a year is it takes too long to get out and set up all the stuff.
18. If I could play another musical instrument, it would be the cello.
19. I am very dependable. I believe if I say I'm going to be somewhere or do something, I should be there or do it... on time.
20. I am an introvert. I need time alone to recharge.
21. I have always liked that I have small feet... size 6.
22. My labors with Nate and Lucy were very different: Nate 23 hours with pitocin and epidural; Lucy 3 hours with no medicine (almost didn't make it to the hospital).
23. If I had a day completely free of responsibility, I would sleep in, go out to coffee, get a pedicure, have a big salad for lunch while reading a good book, then do something craft-related (sewing, scrapbooking, etc.) late into the night.
24. I was an English major in college.
25. I went to Pepperdine University.
26. One of my favorite authors is Ursula Hegi.
27. Some of my favorite musicians are Chris Rice, Fernando Ortega, and Bebo Norman.
28. I don't really like to go shopping. If I need something, I am in and out of the store quickly. I prefer online shopping, especially if the site takes Paypal.
29. One of the first things I noticed about my husband when we met was his deep voice.
30. One of my favorite things about him now is his gentle, even temper.
31. We named our son, Nathaniel (Nate), after Jon's best friend, Nathan (Nate). Nate Johnson was Jon's high school youth leader, and they became close friends who have remained close for over 12 years.
32. We named our daughter, Lucy, after my sister. My sister is sweet, easy-going, quick to laugh, smart, fun-loving, with a strong faith. We would love our daughter to end up the same way.
33. We didn't intend to name both of our children after other people; it just ended up that way. ...Wow, it's already December 8 and I've only come up with 33 things about myself. This is hard.
34. I wear contact lenses and hope to have laser eye surgery one day. My vision isn't that terrible, but it's bad enough that I don't go without glasses or contacts.
35. I don't like staying in PJs all day; I like to get showered, dressed, and ready for the day pretty soon after I wake up. I usually get the kids dressed right away too.
36. I feel naked without makeup.
37. My favorite books as a child were The Chronicles of Narnia, Matilda, and the Laura Ingalls books.
38. My mom says I taught my sister how to read. (I was probably 9 and she was 3.)
39. This list has been my way to put off doing all of the editing jobs that have been streaming in. (I do freelance editing work for grad students.)
40. One of my favorite housecleaning chores is mopping.
41. One of my least favorite housecleaning chores used to be emptying the dishwasher, but now that Nate "helps," I sort of look forward to it.
42. My friend Casey once said, "I'm so bad about remembering to dust the baseboards in my house." I said, "You dust what?"
43. I truly enjoy watching most sports. I know the rules too. (Favorites: basketball and football. Least favorites: soccer and hockey--not enough scoring.)
44. My first job, besides babysitting, was as a bus person at a restaurant in Scituate, Massachusetts, for its Sunday brunch. I was 15.
45. My other high school jobs were at a Christian book store (didn't like it much) and teaching swim lessons (liked it).
46. When I was about 10, I wanted to become an astronaut. This desire didn't last very long, but I remember it well; I even wrote to NASA to ask what classes I should take in college. :)
47. I have one best friend and several other girlfriends. I'm not the type to have a ton of close friends.
48. I got my worst haircut when I was 16 or 17. I brought a picture of the style I wanted to the salon, and the girl just butchered my hair, creating a style that looked absolutely nothing like the one in the picture. It took months to grow out. Now I'm more adventurous with my hair... with color at least, but probably not really with cut.
49. I'm not sure whether we'll have more children. Before we had kids, I thought I'd have 3 or 4, but now I'm not so sure!
50. If we were to have more kids, I like the name Isaac Spencer for a boy.

Varelfas

Here's a Merry Christmas dance from my crazy family to yours. Lucy is the funniest. :)

This morning - updated

Nate had an appointment with the neurologist this morning (a follow-up from his original appointment in March... this has been a long time in coming, since they were supposed to see him after 3 months. This office has definitely not earned a high grade in my book for efficiency, timeliness, following up, or generally knowing what the heck is going on.).

It went how I would have predicted: the doctor praised the fact that we have Nate in behavioral therapy and heavily discounted all of the biomedical stuff we're doing. She would barely let me get a sentence in about how I feel the biomedical treatments are helping; she spoke over me repeatedly about how she doesn't believe they work. The only thing I was able to say without interruption was, "If it doesn't hurt my son but might help him, I'm going to do it." I am not surprised or disheartened, but I am sad for all those other families who blindly, hopefully (that is, full of hope) trust what their knowledgeable doctor says and therefore don't try these other treatments. Anyway, Nate had several melt-down moments while we were in the appointment, and the doctor had some really nice and encouraging things to say about how I handled those from a behavioral standpoint.

The doc ordered some more blood work (everything so far has come back normal) and asked for another follow-up appointment in six months.

Play time

Lucy discovered that the girl in the mirror is really fun.

Videos

This first one is sad but cute. I took the video because Nate was singing with the music, but he ends up saying "Hold you" like I wrote about last week.



Here is Lucy. She started sitting really well this week.

Happy family

This is the closest we've come lately to a full family picture. :) If Lucy looks tired to you, it's because she has been taking extremely short naps! Sleeping at night is still OK though.

Starting the diet

Yesterday I went to Mother's Market and bought lots of gluten-free/casein-free-friendly items, like gluten-free (GF) all purpose baking mix, white rice flour, GF cereal, and casein-free (CF) vanilla rice milk. Today was Nate's first full GFCF day. It went well until tonight, when we were over at Ray and Colleen's (I bring the children over there and Colleen watches them while I teach my flute lessons) and everyone else had pizza (pretty much Nate's favorite food). Poor Nate didn't understand why I wouldn't let him have any; instead he had a GFCF waffle, baby food fruit (he still eats these), and popcorn. He got over the pizza thing once we put it away and everyone was done.

It's interesting that he has been asking for cookies and crackers all day and then rrrreally wanted the pizza tonight. That seems to confirm the idea that his body is addicted to those things.

We will continue doing the enzymes with Nate, but since we'll be doing the diet too, I won't have to be so strict about enzymes with every bite he eats. I'm wondering if it might also work the other way around--that I might not have to be so strict with the diet since he's using enzymes. I'll have to ask about that.

Here are some sites I've found helpful in this very new venture:
Information on flour alternatives - what each kind of flour is good for, substitutes to use for gluten (which is needed to make foods stay together and have a good texture)

Recipes and meal planning ideas - the chicken fingers look good.

Yummy cookie recipe - this blog has several good-looking recipes, many GFCF.

I'll add more as I find them. :)

12/3/07 Wow, this girl has a lot of great information (includes casein-free too):
Cooking & Baking Gluten-Free: Tips from a Gluten-Free Goddess

What's new with us

I received a Nannie request for a blog post, so here's what's new with us!

Nate's Monday-Wednesday-Thursday therapy schedule is going well. He's still adjusting to the group therapy on Mondays and Wednesdays; it's a much different setup, and he still has to learn the "wait your turn" concept, but he's doing well and it's great for him.

This week he just started saying something lots of children say, and I think it's so cute. When he wants to be held, he says, "Hold you." I love that.

Lucy is sitting relatively well and is scooting around on the floor but not getting onto all fours yet. Soon!

Thanksgiving last week was really nice. We went to Jon's parents' house for the meal and had a great day. I must say I do miss my mom's creamed onions. (Mama, can we have that at Christmas?) :)

Jon and I are about to sit down to a homemade pizza and watch the Clipper game!

Cuties

We are loving the park lately, especially now that Lucy likes going in the swing. It's nice for me now, too, since Nate is able to go on most of the structures without giving me a heart attack from almost falling.

Intro to treating autism

I'm no longer feeling overwhelmed by all the information out there on treating autism. But I remember what it was like starting out with Nate, feeling like there was so much to learn but nowhere to start. Here is my primer on treating autism, including books I've read and treatments we've tried. (I'm writing this as much for myself as for anyone else; I like to get all these thoughts down in writing but also want a place to point people to if they come to me asking about the things we've done for Nate. I am definitely NOT an expert on this subject, but I've been learning a lot through research and through friends and acquaintances who have been through it too.)

First, autism is treatable. It isn't just a brain thing. Mainstream/traditional treatments like behavioral therapy are really helpful and should be pursued. Alternative/biomedical treatments are also effective and should be vigorously pursued... as early as possible.

What are the treatments?
Mainstream - Many children with autism are put in behavioral therapy, like ABA (applied behavioral analysis). ABA is a play-based therapy where they work on social skills, eye contact, appropriate play with toys, imaginary play, whatever the child needs help with. Children may also be placed in occupational (for self-care skills, eating, oral motor movement, sensory issues), speech, and physical therapies.

"Alternative" - This is where the list of possibilities seems to go on and on. I use quotation marks because pediatricians and other doctors are often ill informed and don't know about or believe in these treatments, so they would think of them as alternative; however, they are working for many, many children. Because autism is tied up in many systems in the body, not just the brain, it seems logical to treat all of the affected areas, especially the ones that seem to start the chains of symptoms that lead to the ones in the brain. Many parents see results when they put their children on a special diet (like gluten-free/casein-free).* This is because children with autism don't seem to process certain foods correctly, and parts of those foods end up acting like drugs, attaching to the opioid receptors in the brain and thereby altering behavior (among other things). Along these same lines, enzymes can be used (alone or in addition to diet). Here is my post on enzymes. Also, since their bodies often don't process nutrients correctly, these children may benefit from various (and many) supplements. The first book I list in the books section has lots of information on helpful supplements, what they do, and why they are needed. Some other biomedical treatments include hyperbaric oxygen, treating for yeast overgrowth (Candida), chelation/toxin removal, and methylation (which has shown to help over 90% of patients with autism in some way! See here, here, or here).

Books
Changing the Course of Autism: A Scientific Approach for Parents and Physicians - This book changed the way I understand autism. I had read bits and pieces in other books about autism being more than just a brain thing, but Jepson's book fully lays it out. The first half is very technical and very informative, explaining what goes on inside the bodies of children with autism. He cites many, many studies and explains them in good detail. The second half spells out biomedical treatments to try. Jepson doesn't give specific dosing information, because most of the things should be under a doctor's supervision. I like that this book presents the "why" and not just the "what" for treatment.

Children with Starving Brains - Written by the grandparent of a child with autism and the founder of Autism Speaks, this book is written along similar lines as Changing the Course of Autism but is a bit more practical. I still haven't finished this book (am only 1/3 of the way through), but it is on many recommended readings lists.

Enzymes for Autism and other Neurological Conditions - This book is not particularly well written, but it details using digestive enzymes in a very practical manner. DeFelice details what enzymes are, how they work in the digestive system, how to start using them, what to expect when starting, the myriad benefits of using them, etc. It is also from this book that I found out why and how to use magnesium (in the form of epsom salt lotion).

Overcoming Autism: Finding the Answers, Strategies, and Hope That Can Transform a Child's Life - This book is written from a strictly behavioral treatment standpoint. It explains some good philosophies for how to interact with children with autism, encourage them to use language, steer them away from stims, etc. However, it was sort of depressing for me to read: I read this book early on--before Nate was talking at all, and so many of the strategies were for children who were already talking. Overall, I wouldn't say someone should read only this book, but instead read this book in addition to some of the biomedical treatment books. This can help provide a broader, comprehensive treatment picture.

Steps to take
If your child is diagnosed with autism (or you suspect it), here is what I recommend you do:

- Get a regional center/state services evaluation. Here is the Orange County CA reg center website. This will start the process of getting traditional therapy for your child through the state.
- Attend your child's therapy and learn to interact with him/her the same way the therapists do so you can continue the learning at home.
- Look into changing diet and/or adding enzymes gradually; pay attention to your child's behavior and see if you can tell a difference. (Remember to wait out the adjustment period.)
- Find a DAN! doctor. Many successful biomedical treatments (like supplementation or chelation) should be attempted under a doctor's supervision.
- Read, read, read!
- Have someone to talk to--it doesn't have to be someone who has a child with autism, but at least someone who can sympathize, lend a listening ear, and encourage.
- Remember that your child is still your precious, unique child!

Websites
Talk About Curing Autism - This Southern California-based organization's website has lots of resources for parents, including help with special diets, vaccine recommendations, support meetings, and more.

Autism Research Institute - Home of Defeat Autism Now! (DAN!), the ARI website also has many resources, including an overview and myths about autism, a recommended reading list, a video "My Child Was Just Diagnosed With Autism -- What Do I Do Tomorrow?" (under "First Steps"), and the official list of DAN! doctors.

GFCF Diet - Help with starting the gluten-free/casein-free diet.

Kirkman Labs - Supplier of many supplements, enzymes, and other products many parents use.

Houston Nutraceuticals - Where we get Nate's current enzymes, Peptizyde and Zyme Prime.

Enzymes & Autism Yahoo Group - Forum where you can ask questions about enzymes and other biomedical treatments.

Autism Speaks - Contains current news, videos, and research information.

* We still haven't put Nate on a special diet, but in anticipation of being asked to do it when we take Nate to the Rimland Center next month, I have removed straight milk. He hasn't seemed to miss it. Next will be yogurt. It will be hard to get rid of cheese since Nate has a quesadilla at least 6 times per week.

Videos

I've been working on a super-long autism-related post, which is why I haven't posted in a few days. But I just had to come on and link to these videos, one of Nate singing "Jesus Loves Me" and one of Lucy laughing last night.

The weekend is here!

Phew! Here are Nate and Lucy this week.

Beds and car seats

This weekend we took apart Nate's crib and set up his toddler bed. He was so excited about it... until we told him he had to sleep in it. :) So Jon sat in the room with Nate for an hour or so that first night, but the two nights since then have been a breeze (in part because we installed a bed rail the next day), AND he has still been taking a nap! The transition was easy, and Nate is proud of himself and his big boy bed.

It's about time for Lucy to switch to a bigger car seat, so I was planning on giving her Nate's and getting a new one for Nate. This is where I need some help: what "next step" car seats do you all use or have liked in the past? So far I've looked at the Britax Regent, which is huge but really safe; the Cosco Summit, which keeps him in a 5-point harness until 40 pounds and then switches to a seatbelt booster; and the Evenflo Generations, which is like the Summit. Nate weighs 32 pounds right now. What do you all recommend?

Then & now pictures

Nate at 4, 7 months, and 8 months; Lucy at 7 months