Second DAN! appt

I have much to write about (like always) but because I need to go to bed and nurse this cold I have, I'll make this one short and sweet and about just today.

We saw our DAN (Defeat Autism Now) Dr. This time it was just me and Riley. DH was at work and Jack stayed with Grandma.

New plan:

Continue everything we’re currently doing:

• GFCF
• Phasing out soy and corn
• Eating as much organic as possible
• Digestive enzymes with meals and snacks
• Probiotics 2-3 times daily
  
• MB12 shots every three days
• DMG & taurine daily
• Epsom salt baths
• Being mindful of household toxins

New:

• Cod Liver Oil. Had been putting it off and decided to take the plunge. I got orange flavor from Nordic Naturals and put it in OJ. No biggie. Mostly for essential fatty acids, but Riley also has a lot of visual stuff (shadows, bright lights, sideways stares and gazing, etc) that the vit A in CLO may help.
• Saccharomyces Boullardii one capsule per day, work up to one or two capsules three times per day. This is for the yeast or bad bacteria that he suspects Riley has. Because of the poop change, the smell of it (yuck) and his behavior changes. With this supplement, we'll be using
• activated charcoal if there are die-off symptoms.
• Try going off turkey and turkey products for 1-2 weeks. (I mentioned a reaction to having turkey with Grandma) We eat ground turkey a few times per week. I bought ground lamb to try when we give this a shot.
• Oxytocin nasal spray to help with social interaction. Prescription is at the compounding pharmacy if we want to order it. I still need to do research. Autism and oxytocin was something I researched long before I knew I had a child with autism. I really believe hormone disruption can also play a part, so seriously considering this.

TESTING!!! (This is the one I’m really hoping helps us)

• Various tests with urine and stool, including for metals, yeast, bacteria, RNA and DNA damage… and a few others.

Cost?

• You seriously do not want to know.

Really, though, I am so glad we have Dr Van Dyke as a resource. He is obviously a physician, but because he’s also a parent of a recovering child, he is great at his job. He took over an hour and a half with us today (when the appt was supposed to be 45 min) and he really listened. I’m so grateful to have him! It’s nice to have someone to check in with and guide us. The Hyperbaric Center also has a mom's night out, which I want to go to sometime. This month's falls on a night when I already have a commitment, but maybe December.

Before we left, Riley and I went to look at the HBOT chambers. We did talk a little about it, and I’m thinking about it at this point. It’s a big commitment to do the dives for an hour a day for a month, but I think it could be very worth it. Also, as a bonus, I would go in with him because he’s so little. Since I have ulcerative colitis, among other autoimmune issues, I think it would really be of benefit to me. So two treatments for the price of one. ;)

I will post again about carving pumpkins another time. Oh, that was fun. Riley was so in to it!! He knew exactly what to do. So fun.

A Pumpkin for a Punkin

We visited a farm today and went to pick out pumpkins. I was so glad we decided to do it. It was really nice. It was a little bittersweet to see Jack, our 16 month old, and his reactions. It's fun to see him interact with his environment and be so present. It's always hard, though, to think back to when Riley was that age and realize he never did those things. He was different, so different. And we didn't know.

I have been talking with Riley about yesterday, today, tomorrow lately, and I think he's finally beginning to understand what that means. I told him a few days ago that we'd be going to get pumpkins on a farm with Grandma, Grandpa, and his cousins. Yesterday I told him we'd be going "tomorrow." He said "It's dark outside." (as if to tell me, it's night time, and when it's light, it will be tomorrow) He then woke up and remembered we were going to get pumpkins on a farm today. He is starting to do this more often, and it's so fun. He recalled the entire trip as we were driving home from the farm. He talked about riding "on the tractor" (hayride) and getting pumpkins, etc. Tonight in the bath he said "yesterday went to co-op." I told him yes, he was right. We did go to the co-op yesterday. I asked him what we bought there. He was able to recall three items we bought.
The neuropsychologist we saw in May and July told us that the main cause of Riley's anxieties and stimming was his reaction to the unpredictable. I would agree with that. That is the reason that him anticipating things, and remembering things, is such a huge leap forward.

The speech/language therapist, Sandy, came on Friday. She usually comes with Danna (teacher) but she wasn't able to come. I had a nice talk with her. Riley doesn't qualify for speech and language services but somehow we got it through a loophole. He tests in the lower average range for speech, with a very large vocabulary. But it is the social aspect of speech we're working on with Sandy. She told me they call it "parallel speech," sort of like young kids do parallel play. Basically, we can be talking with each other but not engaging in a conversation about the same thing. It's so, so hard to explain to others. He has a hard time with "W" questions, and will not usually answer yes or no questions. But if, for example, we asked him if he wanted to go outside, he would get his coat and shoes and say "go outside" or "go outside Riley." He just wouldn't say, "Yes, I want to go outside." Or, "Let's go outside." He is able to get his own needs and desires met.

Of course I know there are children with autism that never speak. And I feel very lucky that Riley is able to communicate with us. I hope to give him the tools he needs to be able to talk with others in a social manner, though. With time, I think he will.

One other thing he did during Sandy's session was label the animals as people. He took the two big cows and called them "mama and daddy" and then two babies and called them "Riley and Jack," without Sandy or I saying anything to encourage it. He then called two other animals Danna and Sandy. When I asked which one was Martha (a daughter of a friend of mine, who he sees often) he took a baby goat and said it was Martha.

So many other things, and so little time. We see our DAN! Dr on Thursday morning.

Phrases (and concepts) that made me smile

Two things from yesterday.

Riley and I worked on "please" and in a 25 min period, I was able to get him to say please six times. He then asked me for a banana, saying "Have some banana please." We'll continue to work on this one. Manners is something I've been trying hard to work on... social conversations.

Yesterday, while watching Finding Nemo, Riley, out of the blue, said, "Nemo's Dad. Yep, that's Nemo's Dad." And then said (referring to Nemo's Dad and Dory) "Yep, that's a Dad and a Mom. That's Nemo's Dad and a Mom." He also said "Nemo stuck. In pipe. He's stuck in there." (referring to the part where Nemo gets sucked into the fish tank filter) I haven't noticed that this has happened much before, where he has understood what was going on in a story on TV. I also haven't ever heard him talk about moms and dads that way... like everyone has them.

Yeast

I'm 99% sure Riley has yeast at the moment. He has yellow stools, a bumpy rash on the insides of his thighs, and he's been REALLY moody. We have all but gone off of the hemp milk, and DH and I are going to really try to eliminate juice, too. I know other foods are yeast feeders, but I'd like to talk with our DAN! Dr before we get too deep into it.

DH reported this afternoon that while outside, Riley came up to his brother in the sandbox and said "Want to go on teeter-totter, Jack?"

Sorting it all out.

So, the last two posts I've made have been a little depressing. But, we are seeing a lot of good things. A LOT. I just need to remember how far we've come.

First of all, I have to link to this despicable piece of shit, because it is just so ridiculous.
http://www.huffingtonpost.com/2008/10/15/denis-leary-slams-autism_n_134749.html

Seriously.

And, without getting political, because that's not what this blog is about. I have to say it really bothers me... to the core... when a politician plays the autism card to try and get undecided voters. The truth is, we can talk and talk about "researching" and "getting parents help" but the problem is going to get worse before it's going to get better-- that is UNLESS WE ACKNOWLEDGE that some of what we're seeing in children is caused by the very things that are supposed to protect them. When I hear someone talk about funding research for finding the causes of autism, I want to scream at them. If we continue to listen to research as told by the companies that manufacture vaccinations and implement the schedules, it's going to get us into deeper shit.

Please, please listen to US. The parents.


I digress.

Riley is really doing great. I really, really like our new OT and I think it will be the most helpful therapy for him. He left some "fidget" toys here, so that when Riley is doing a lot of stimming, or sensory seeking (ie, pushing his brother over for no reason) we can intervene. So far, so good. We've also been bathing them separately. Today, Riley hugged Jack. He said "big, big hug" and snuggled into him.

Some new things he's been doing. This past week, rather than shouting and crying and acting out, he asked me to pay attention to him. Well, sort of. He said "Turn off computer" and "Turn off a phone" When I was on the phone, he also climbed into my lap and snuggled into me, kissing my cheek and touching my face. While affection has always been something Riley has shown, it was really neat to see it in this way. He really just wanted my attention.

He is doing really well with imaginative play... I think this is really helped by our weekly babysitter, who also works for an autism therapy services. She's great. She's also taught him a lot of songs.

I'd say the next challenging behavior I'd like to take on after the issues with his brother (which are most important at the moment) is he's crying/screaming when he wants something and not taking no for an answer. I think redirection will help with this. I think the "fidget" toys may also help.

Oh, and before I forget-- we are starting the pinworm treatment as soon as we get the prescription. And we're starting another 5 week stint of MB12. And we see Dr Van Dyke again on October 30.

I am off to bed, hoping to be at a birth tonight. I have one client due and then have an extended break. I'm ready to really focus on my kids for a bit.

Highs and lows, cont'd.

To follow up on my last post. I'm still feeling frustrated. How do you know what's working and what isn't? I see these other parents on various yahoo groups that know when their child is experiencing xyz... I don't! I can't connect behaviors to anything.

I have been trying to get a hold of our DAN! Dr for better than a week and a half. Riley started stuttering for the first time ever, and had what looked like pinworms this week (but truthfully, I wonder if somehow white threads ended up in his butt, because I haven't seen them since) He's been constipated for almost two weeks. When I say constipated, it's not that he can't go. It's that his BM's are hard, or pebbles. And while I know I can give him something to help that, I prefer not to. His BM's are a sign of his overall health, IMO, and that he's getting what he needs. Something, somewhere is obviously off balance if it's like that. The first month and a half of GFCF, he was having very squishy, normal BMs. Now we're back to this. Something is off.

We had the OT come for the first time last Tuesday, and he was asking a bunch of questions. He asked if Riley tolerated bath time. I said yes, but then thought for a second... Riley is extremely agressive toward Jack in the bath. The OT (Andy) then pointed out Riley's reaction to a "weird" toy that he brought: he was kicking and stomping at it. So, I'm wondering if the bathtime stuff is a sensory reaction. I'm frankly wondering if a lot of Riley hurting his brother is sensory related. Some of it is obviously "I'm playing with this, leave it alone!" This morning they were fighting over a toy and I made a point to have them take turns. He seemed to understand it, but it still pissed him off.

He had a really good period of time just before lunch today. I told him we would have lunch after we picked up the legos. He started picking them up. He was looking all over the floor for them in various spots saying "I found it!" I would say "Find the green lego!" and he'd go around looking for it and say "There it is. There's green lego." He understood something in the future... first we do this, then we do that. He has been better with following directions. My husband noticed outside he was easier to keep out of the road. I didn't notice any change there. My mom also said he was listening well for her the other night, while DH and I were out for our anniversary.

So back to the DAN! Dr... I hope to get in to see him the end of this month while I have a break from births. I want to do some major testing to find out what's going on. Just as a matter of record, this is what were doing right now for biomeds and supplements:

No gluten, casein
Very little soy or corn (we're mostly off both, just a few things that have either as an ingredient)
MB12 shots every three days
Taurine 250 mg daily and DMG 250 mg 3x daily to help MB12 work
Probiotics twice a day
Digestive enzymes with every meal and snack (zymeprime and we'll be starting peptizyde this next week)
Multivitamin (we're doing the Lee Silsby ASD formula, which is $80 per month and smells terrible. Riley won't take it, I almost have to force it. It's bad. We need to find another brand. Any suggestions?)

I think we'll start cod liver oil soon. He's been drinking hemp milk daily, which has a lot of essential fatty acids, but I am wondering if the hemp milk itself could be causing set backs. We'll see.

Yes, I really need to see the Dr. My head is spinning with information, and I want to be sure we're doing the right protocol. I'm honestly not even sure if the MB12 shots are working or not, but I'm ordering more on Monday to give it another month, at least.

Highs and Lows

Some good progress:

Riley said "help please" yesterday for the first time without me having to remind him. He was putting beads onto a lacing bead game and was having trouble with one.

He also was very verbally sharp last night. I asked him, "Is that a purple dog?" (knowing it was orange) and he responded, "No, it's not a purple dog. It's an orange dog."

He has been regularly greeting people with "Hi." He still reacts by throwing himself backward and shouting "eh! eh! eh!" when kids come near, but is saying "Hi" to adults. He also says it to myself, my husband, his younger brother, etc.

A little bit of frustration though these past few days. He seems to have lost a bit of hand coordination. He was coloring inside lines and drawing pictures and suddenly is acting like he forgot how. He's reverted back to having us draw things for him. I'm not sure what that's all about.

Eating is still a big challenge as well. I'd really like to work with the OT on that, but it's not at a mealtime (it will be at 2 pm, we have our first session tomorrow)

Constipation has also returned and I don't know why. I can't pinpoint what it's connected to. I thought it was a brand of cereal that contained mostly corn, but it's persisted even though I took the cereal back out. I'm starting him on digestive enzymes this week, so perhaps that will help.

The biggest challenge right now is how physically aggressive he is toward his 16 month old brother, Jack. More often than not, if Jack is around, Riley is upset. I don't know what to do to help these behaviors. He's not like your average kid that you can give a time out to. He doesn't understand. No matter how many times we say "We don't hurt Jack, we love Jack." it doesn't hit home. If anyone has dealt with this and has advice, feel free to share.

I'm frustrated by inconsistency, I guess. I feel like I'm overanalyzing all of his behaviors and trying to figure out why they are happening. I waffled about whether ABA would help, but I think a lot of these things could be helped by good therapy. I am not thrilled with what we're getting through the school district, but we can't afford ABA right now. Biomeds is so expensive... I don't know how people do both!

One thing to also note. Hot dogs are not GFCF. I read somewhere at the very beginning of this diet that Ball Park was a GFCF brand. Nope, and not to mention they are full of crap. When I originally put together our dinner recipes, we were doing hot dogs maybe once per week. Now we're not doing them at all. Damn, another thing we can't have that was easy!

I guess this wasn't the most organized or well thought out entry, but as always, so many things have been running through my head.

Our favorite dinner "recipes"

I call them "recipes" but they aren't. I just throw things together. :) I don't make much from scratch, and to cut corners we do buy some mainstream/conventional brands. These are a few favorites we've been rotating lately. Some of these contain soy and corn, which we are phasing out but finding hard. This is becoming routine, finally. Anyway, figured I'd post in case anyone else needed some ideas. We are a family of two adults, and two young kids.

1. Chicken and mashed potatoes

Ingredients:
4 fresh chicken breasts
5-6 large organic russet potatoes
Healthy Valley organic chicken broth
Olive oil
Sea salt

Directions:
Peel potatoes. Place in large pot of water, covering potatoes completely. Once boiling, cover and simmer on med/low about 25-30 min or until the potatoes are very tender.
In about 2 tbsp of olive oil, cook chicken breasts on medium about 8-10 min on each side or until thermometer reaches 165 degrees.
Just before chicken breasts are done, drain potatoes in a colander. Place them in a large bowl or mixing bowl. Beat while adding enough chicken broth to get your potatoes as smooth or lumpy as your family likes them.
Sea salt to taste.
Serve with a side of organic veggies (green beans seem to "go" with this one)

2. Pork chops and rice

Ingredients:
4 fresh pork chops (bone in, butterfly, or thin cut)
Red pepper
Green onion
Basmati rice
Safflower or olive oil

Directions:
Chop red pepper and green onion. Place in medium to skillet with 1-2 tbsp of oil. Once hot, add pork chops and fry. Cook about 8-10 min on each side or until thermometer reads correct temp (150?)
While pork chops are cooking, boil 1 1/2 cups water. Add 1 cup rice to water. Turn heat to low and cover. Simmer about 15 min. (I use basmati because it's so quick. If using brown or white rice, begin cooking rice prior to making pork chops as it will have a longer cook time.)
Serve with a side of organic veggies (I do asparagus with this)

3. Crock Pot Chili

Ingredients:
1 to 1 1/2 lb ground turkey
14.5 oz can organic diced tomatoes
8 oz can organic tomato sauce
1 medium zucchini, diced
1 large onion, diced
4 cloves fresh garlic, minced or pressed
1 can organic chili beans
1 can organic kidney beans

Brown ground turkey. In warm crock pot, add diced tomatoes and tomato sauce. Peel and finely chop zucchini and onion. Press or mince garlic. Add ground turkey. Simmer on low for 6-8 hours or medium for about 4 hours. Add beans 30-60 min before serving.
We served with tortilla chips before going off corn. We now serve with rice snap crackers.
This usually makes enough to freeze half.

4. "Turgetti" (what Riley calls any pasta and sauce)

Ingredients:

1 to 1 1/2 lb ground turkey
1 jar Classico tomato and basil sauce
Brown rice pasta (spirals, spaghetti, elbow, penne)

Directions:
Brown ground turkey. Boil water and add pasta, cook as directed. Drain meat, add sauce and simmer a few min.
Serve with any veggie. We often do salad greens and Annie's honey mustard dressing.
You can also add onions, fresh garlic, mushrooms, or zucchini to the sauce.
We usually have a lot of leftovers with this because a lot of the pasta comes in large packages.

5. Honey-lemon Stirfry

Ingredients:
4 fresh chicken breast
Honey
1 fresh lemon
Basmati rice
Cascadian farms organic stirfry veggie mix

Directions:
Combine about 1/4 cup fresh squeezed lemon juice and 4 tbsp of honey in a medium sized bowl. Slice chicken breasts into 1/2 inch strips, then cut those strips in half. Place them into the honey/lemon mixture, covering all of the chicken. Dump entire bowl onto a skillet on medium-high. Cook chicken thoroughly (about 12-15 min?) before adding stirfry veggies. Cook veggies until tender/crisp, stirring entire skillet often.
Right after putting the chicken onto the skillet, boil 1 1/2 cups water. Add 1 cup rice to water. Turn heat to low and cover. Simmer about 15 min. (I use basmati because it's so quick. If using brown or white rice, begin cooking rice prior to making pork chops as it will have a longer cook time.)

6. Crockpot Roast and veggies

Ingredients:
1 small or medium beef pot roast (I use black angus)
3-4 large organic carrots
2-4 large organic celery stalks
1 large onion
2 cloves garlic, minced or pressed
4 large russet potatoes (if desired)

Directions:
Easy. Place roast in crock with chopped carrots, celery, garlic and onion. Cook on low for 8 hours, or medium for 4-6 hours. Add potatoes in the last hour if desired. Sometimes I make this with mashed potatoes.

7. Pancakes and sausage

Ingredients:
Namaste pancake and waffle mix
Jones' light sausage (rice based)
Um, the stuff you need for the pancakes... eggs, rice milk, and oil?

Directions:
Another easy one. We serve with organic maple syrup and OJ. The taste takes some getting used to, but my kids really like them. DH and I... can tolerate them.