Andy's Autism

I used to have a handle on life, but it broke!

2010-08-16T12:10:00.000-07:00

It is difficult to keep up with everything. Right now I am trying to keep up with Andy's schedule and health, Lena's sports, and my schooling. So what falls to the wayside? My blog!!
Andy's update:
His new medication is working. He is having less episodes of spitting up (mainly happens when he can't find anything else to do). A full schedule helps to keep it down. He is digesting food again, and he is growing again, finally. Now we have to tackle the toe walking, because it is causing problems with the growth of his feet. It is also causing problems with his posture. He needs lots of dental work now because of the spitting up. If it's not one thing it's another.
Lena's update:
She keeps busy with all her sports. She just started soccer practices, and fast pitch softball (winter ball) for a 3rd season. She is excited to start 4th grade.
My update:
School has been going great. I have one more semester of prerequisites to complete, then I will apply to nursing programs in the spring. I hope that I will get accepted for the Fall of 2011.
Todd's update:
He works super hard running and growing Servicesidekick.com. He loves what he does.

We are all excited for another school year and sporting season.

It's been too long!!

2009-06-28T12:14:00.000-07:00

I can't believe that my last post was in February. Time seems to slip away from me.

A lot has happened in the past months. We moved, I started back to school to become an RN, Andy turned 6, and we took a trip to Disneyland.

There's never a dull moment around here. We have been working hard since April to get Andy to stop spitting up (the nicest way of putting it). Throughout the day he can bring food backup effortlessly. He plays with it, painting the walls and windows of his bedroom. He can do this up to 20 times a day. At times I think I am going to pull all my hair out. I am so tired of cleaning it up, I clean windows, clothes, and bedding daily. We are working with Andy's GI doctor to get a handle on this problem.

Disneyland was amazing, our first family vacation since the diagnosis. They really try hard to accommodate people with special needs. We got a special pass for Andy that allowed us to bypass the long lines. There is no way that Andy could wait. We took him on every ride but 3. He wasn't tall enough for Indiana Jones and California screamer, and we were worried that Space Mountain might bring on a seizure. He loved every ride especially Pirates of the Caribbean. The thing enjoyed the most was meeting his favorite characters Winnie the Pooh, Eeyore, Tigger and Mr. Incredible. His face lite up like nothing I've ever seen before. He smiled from ear to ear. I couldn't hold back the tears of joy. The other great thing about Disney is that they have added GF/CF items to their restaurant menus. It made it so much easier for us, we only had to take a lunch and snacks for Andy. I'm looking forward to our next trip. I'm working on a slide show of all the pictures that I can upload to the blog.

Andy's Clam Chowder

2009-02-16T14:52:00.000-08:00

Andy’s Clam Chowder (GF/CF)

Ingredients:
4-5 medium Potatoes
1 can chopped clams
1 can minced clams
1 bottle clam juice
1 tsp black pepper
½ onion finely chopped
½ container Tofutti soy sour cream
½ lbs GF/CF Bacon chopped

Peel potatoes and cut into 1” cubes. In a large pot boil potatoes with clam juice (including juice from cans), and black pepper. If clam juice doesn’t cover the potatoes add water. Cook chopped bacon and onion together (do not drain). When potatoes are done add bacon and onion, clams, and sour cream. Stir all together and keep on low heat until ready to serve.

If you want to make a larger pot just double the ingredients. It's great durning the cold winter months.

Yummy Spice Cake

2009-02-16T14:39:00.000-08:00

Mjuk Peppar kaka (Mormor’s Spice Cake) GF/CF

Ingredients:
2 eggs
1 ½ cup sugar
1 ½ cup Gluten Free All Purpose Baking Flour (Bob’s Red Mill is what I use)
1 tsp Xanthan Gum
1 tsp Cardamom
2 tsp Cinnamon
2 tsp baking powder (recommend Aluminum Free)
¾ cup Milk substitute (Rice, Almond, Hemp or Soy milk)
1 cube Margarine (can be substituted with ½ cup applesauce or other pureed fruit)

Preheat oven to 350°. Grease and coat with GF/CF flour a 9x5 inch loaf pan. Or for smaller loaves use three 5x3 inch loaf pans. In a large mixing bowl combine eggs and sugar. In a smaller mixing bowl combine all dry ingredients. Slowly add the dry ingredients into the eggs and sugar. Then mix in the milk substitute and margarine. Place the mixture into the loaf pan(s). Bake larger loaf pan for 1 hour and smaller loaf pans for 45 minutes.

This recipe was one of Andy's Swedish Great Grandmothers. I converted it to GF/CF, and the house always smells wonderful after I make it. A warning about this recipe, it doesn't last long because it's so yummy everyone eats it up.

A few Updates

2009-01-19T20:13:00.000-08:00

So much so little time. A lot has happened in the past couple of weeks. Andy started kindergarten on January 7th. I really like his new teacher and Andy seems to be doing really well. The only regression we have seen is his vomiting come back. I stopped it with an acid reducer. I think he has anxiety when things change which causes acid reflux. The other issue we have been dealing with is his sleep patterns. He has been waking around 1:30 am and sometimes staying up until 8:00pm the following night. Todd and I have been taking turns waking up with him, but it is taking a toll. One of our therapists suggested Valerian Root. It's a supplement that helps with restful sleep. Andy has been taking it for almost a week and we are seeing good results. He will now sleep until 5:30 or 6:00am, and there have been a few 1:30am wake ups but he has been able to fall back a sleep. Everyone I talk to says the key to feeling better is a good night sleep. I have no idea when I will start feeling better. My hope is that someday soon Andy will sleep until 7 or 8am so that I can start getting some good sleep.

Cooking for the Week!

2009-01-03T21:36:00.000-08:00

When I am in the mood I love to cook. So tonight I got to it and made some yummy foods. Turkey meatloaf and Apple-Fennel Meatballs with Liver. Yes I cooked liver, and it turned out great. I thought the Fennel bulb was so cool I took a picture of it. And what kid wouldn't want to eat a meatloaf cupcake.

Other Best Christmas Gift

2008-12-30T19:10:00.000-08:00

Andy loves his trampoline that Grandma Ingrid and Grandpa Chet got him for Christmas. He learned to jump just 2 months ago and we can't get him to stop (we really don't want him to stop).

Best Christmas Present

2008-12-30T14:10:00.000-08:00

Andy loves the scooter board at school, so his Grandpa Vern made him one for Christmas. He loves it and here's the video to prove it. We were so excited to hear him say "YA" when we asked if he was ready.

Old Blog Page

2008-12-30T13:37:00.000-08:00

OK, I tried to copy over all my posts from the old blog. It was going to take to long, so to keeping with my new philosophy of keep it simple, here is the link to the old blog.
http://360.yahoo.com/wendieccles
You can read all the old post here.

Thougful House Trip

2008-12-30T13:26:00.001-08:00

We did it! We made it to Texas and back without a hitch. Andy did amazingly well. He didn't mind that he couldn't eat for 2 days and made it through all the procedures without any complications. We want to thank Dr. Krigsman for taking such great care of Andy. The picture above is of Andy and Dr. Krigsman. Before the procedures were done Dr. Krigsman told us not to be surprised if they didn't find anything during the scoping. Most of the findings are from the Pill Cam pictures and the tests done on the biopsies. We were so happy to here that Dr. Krigsman found evidence of inflammation and nodules (tiny bumps). Now we will wait to hear the final results from Dr. Krigsman, some time in the middle of June. Then we will know how to treat Andy's GI and hopefully get good results from the treatments. I do have to add that it was documented in the procedure report that "the quality of the prep was excellent". Yeah for me!!!
The rest of the Thoughtful House visits were also great, we are so excited to be working with the Thoughtful House Team. After meeting with the Nutritionist, I have more confidence that I am feeding Andy well and doing a good job with his Gluten and Casein free diet. We will be starting Andy back on supplements to help with sleep and to support his body with vitamins and minerals.
We want to thank everyone who helped Andy to get these procedures. We really appreciate every ones well wishes and support for Andy's recovery.

Texas Here We Come!!

2008-12-30T13:23:00.001-08:00

We will be leaving on May 18th and returning on May 21st. Andy is going to be treated at Thoughtful House in Austin Texas. He will be seeing Dr. Krigsman (as I like to call him the GI Guru) on Monday. Dr. Krigsman specialized in the treatment of children with severe GI issues. To find out more about Dr. Krigsman you can go to www.thoughtfulhouse.org. Andy will undergo all his procedures on Tuesday; a Colonoscopy, Endoscopy, and a Pill Cam study. Then we will meet with the Nurse Practitioner and Nutritionist on Wednesday. Our hope is to finally get some resolution to Andy's GI issues. We truely want to thank everyone who has helped us to get to this point in Andy's treatment. In the middle of June we will have a phone consult with Dr. Krigsman to find out what was found during all of Andy's procedures. I hope I will be able to blog about good results for Andy.

Vaccine Schedule Recommendations

2008-12-30T12:21:00.000-08:00

Many people have asked me what vaccines do I recommend. I have a book that I suggest everyone read, What Your Doctor May Not Tell You About Children's Vaccinations, by Dr. Stephanie Cave. My response to parents that ask me what they should do is, do your research talk to your doctor before you start vaccinations, and if doesn't feel right don't do it. And my #1 response is if your child is or has been sick with in 2-3 weeks before your scheduled vaccinations, don't do it, because their immune system is weak and needs to build back up.

Do not vaccinate your child if he/she:
• is having fever (even low-grade), or runny nose/diarrhea/constipation, or any other illness, or still recovering from an infection, or on antibiotics for other reasons. You may postpone vaccination on another day.
• had any bad reaction or deterioration in health after previous vaccination.
• had any past history of immune system disorder, severe allergies, convulsions or neurological disorders, vaccine reactions.
• Always have full information on the vaccine's side effects.
• Ask the doctor on how to identify a vaccine reaction.
• Know the vaccine manufacturer's name and lot number.
• Report any side effect to the doctor, NVIC, and VAERS.
• Always ask for single dose, mercury-free (no thimerosal) vaccines.
• Ask for separate vials of measles, mumps, and rubella, and give them separately, months apart.
Recommended vaccine schedule:
(By Stephanie Cave, M.D. - DAN! Practitioner and Vaccine Expert)
Birth - Hepatitis B only if mom is Hepatitis B Positive; otherwise, no vaccine shot.
4 months - Hib, IPV
5 months - DTaP
6 months - Hib, IPV
7 months - DTaP
8 months - Hib
9 months - DTaP
15 months - Measles
17 months - Hib, IPV
18 months - DTaP
24 months - Prevnar (1 dose only)
27 months - Rubella30 months - Mumps
4 years - Varicella (if not immune already)
4 - 5 years - Hepatitis B series
4 -5 years - DTaP, IPV boosters
4 -5 years - Test titers for MMR and do not give unless not immune. Immunize only for
vaccines found to be negative.
• Ask the doctor to check vaccine titers to check for immunity before giving boosters.
• If you have to vaccinate, give the following:
Vitamin A (cod liver oil) 1 tbsp for three days before and on the day of the
shot.Vitamin C 100 mg twice daily for infants and 300mg twice daily for toddlers for
three days before and on the day of the shot.

NVIC (National Vaccine Information Center)
421-E Church Street Vienna, VA 22180
(703)938-0342
http://www.909shot.com/

VAERS (Vaccine Adverse Event Reporting System)
P.O.Box 1100 Rockville, MD 20849-1100
24-hr toll free info line (800)822-7967
www.vaers.org
Email: info@vaers.orgFax: (877)721-0366

A good website to check out is Generation Rescue:

http://www.generationrescue.org/vaccines.html

DAN! Conference 2008

2008-12-30T11:51:00.000-08:00

I love going to the DAN Conference every year (this was my 5th trip)

DAN! is a MAGICAL Land

It is a place that teaches new and old treatments for Autism.

A place were everyone there is living a life similar to mine.

A place to meet new people.

A place where I don't feel alone.

A place were Doctors actually want to help.

Well, I survived the 3 day conference again (this was my 5th). It usually takes me a couple of days to recover after the upload of all the information. I feel revitalized to tackle another year. I am ready to try some new and old things. We put Andy back on some of his supplements and will be adding more in slowly. I also learned how to make fermented foods. My kitchen is now an experimental zone. I started my first batch of Sauerkraut, and today I am working on making my own Kombucha and nut yogurt. I never would have thought I would become the "Granola Munching" Save the Environment Mom. It's sad that more people are not environmentally conscious. I think every child should be required to take a class in Environmental studies. Well enough on that.
I will keep you all updated on how my experiments are coming along and how Andy does on them. I have to get back to my kitchen, and appropriately enough it is Halloween tomorrow and I feel like I am making my Witches Brew.

What is GFCF and am I ready to start it?

2008-12-30T11:21:00.000-08:00

Are you ready to start the GFCF Diet? GF means Gluten Free, gluten is the protein found in wheat. CF means Casein Free, casein is the protein in all dairy. Most of our kids have trouble breaking down these proteins. The GFCF diet removes both wheat and dairy. It's not as hard as you think, and every child can benefit from a healthier and easier diet to digest. There are so many good substitutions and ways to make them look and taste the same as food that contain wheat and dairy. I suggest starting small and working your way up. It can be overwhelming at first. A great place to start is on the TACA website. They have a great plan to get you started and great lists of GFCF foods and stores that carry them. Read all ingredients on packages, they will list if they contain wheat and dairy. If your not sure you can call the 1-800 number on the package and ask the company if they contain wheat or dairy. I also suggest finding someone who is doing the diet and pick there brain. I love to help so you can always email me with questions. I have been successfully implementing this diet for 4 years with my son. I am going to list some of my favorite GFCF cookbooks and websites that have recipes and great information.
Cookbooks:
Special Diets for Special Kids (1&2) - Lisa Lewis
The Kid-Friendly ADHD & Autism Cookbook - Pamela J. Compart and Dana Laake
Cooking Free - Carol Fenster
Wheat-Free, Gluten-Free Cookbook for Kids and Busy Adults - Connie Sarros (this book does us Dairy but you can substitute with non-Dairy)
The Allergy Self-Help Cookbook - Marjorie Hurt Jones
Breaking the Vicious Cycle - Elaine Gottschall
Having It All Without Dairy, Wheat or Sugar - Gwynn Palmer

I am in the process of getting my recipes typed up so I can post them on this blog.

Websites:http://www.gfcfdiet.com/http://www.healthfulliving.org/TACA

There are many others. Become a Google-ologist, by dedicate some time to research different websites for the diet.

Where Should You Start If You See Signs?

2008-12-30T11:14:00.000-08:00

Where to start if you suspect your child might have signs of Autism?

Start with your Pediatrician (they should know the basic signs to look for)

Get a referral to a Psychologist (Our son needed a psychological evaluation and diagnosis to receive services)

If you have a Reginal Center contact them right away to get an appointment

Contact your local support group (can be found on Google or any search engine)They have many resources and can supply you with a lot of help

Go to a DAN Conference (there are so many parents there ready to lend a helping hand)They have financial services available (Fall Conferences on the West Coast; Spring on the East Coast)
Research ABA programs in your area and get your name on the list as soon as possible (waiting lists can be long)

The most important thing is: YOU ARE NOT ALONE!!!!

How It All Started

2008-12-30T10:47:00.000-08:00

Andrew was born June 4, 2004 in Roseville, California. He was 21”, 7lbs 5oz and healthy. We moved to Washington when Andy was 10 months old. My mother and father came to visit us in Washington in September of 2004. My mother was the first to really see the change (Andy was 15 months old). She noticed that Andy wasn’t aware of his surroundings or sounds. We started to challenge his hearing by banging blocks behind him to see if he would look for the sound. He didn’t flinch or blink his eyes. We thought he was deaf. I knew this was something we could handle, we would have his hearing tested and if hearing aids didn’t work then we would all learn sign language. When we had his hearing tested all the test results concluded that Andy could hear fine. That’s when I started to get scared, what was wrong with my baby? I went to his pediatrician for help. He told me that Andy looks like a healthy baby. I asked if Andy might have Autism. He told me that he didn’t see any signs of Autism. This was a relief for me, but we still didn’t know what was going on. The doctor gave me the phone numbers for Children’s Services of Sno Valley (CSSV) and a Neurologist. I called both. We got and appointment with CSSV in December and the Neurologist was booked out for 9 months (October 2005 was the soonest appointment). Andy was evaluated at CSSV and a week later we got the results that he was severely delayed in all developmental areas. This was not surprising news to me. From September to December I was watching him closely and noticed that he was not communicating in any way. I looked in my baby books to see what milestones he should be meeting and noticed that he had only met one and that was walking. He was very off balanced and spent most of his time alone. He had no interest in anyone not even his older sister. I asked Andy’s doctor to give me the name of another Neurologist; we were able to get into see him sooner. He asked us a lot of questions and evaluated Andy for about 5 minutes. Then he told us that Andy had brain damage and we would do some blood work and he wanted to see Andy back in 6 months. We were thoroughly disheartened by this. We couldn’t believe that he wasn’t going to order any other tests to determine the extent of the brain damage. In January 2005 Andy started Speech and Occupational Therapy for his delays. Each session was one day a week for one hour. He was also meeting with a special education teacher for one hour a week. All three of the therapists told me they didn’t see any signs of Autism. By this time I couldn’t believe them. I started doing research on the internet and looked into what the signs of Autism really were. I found a lot of sites that listed symptoms and when Andy fell into 85% of the symptoms I know he was Autistic. But with no diagnosis and no one that would listen to me I felt frustrated and alone. While we were trying to get help in Washington, my parents were doing lots of research of there own in California. They found an article by Dr. Andrew Wakefield that said Autistic children were benefiting from a diet without gluten or casein, so we took them out as best we could in February. Within one week Andy started to make eye contact, and his therapists were amazed. My parents also found a wonderful resource at Warmline. They found that we could get help back in California, so we packed up and moved back. As soon as we got back to California I called Alta Regional Center on March 14th and got Andy registered. On March 24th we were seen by our service coordinator and things really started to happen. April 6th Andy was evaluated and diagnosed with Moderate to Severe Autism. We knew he was autistic, but to have someone else validate it made it real and very emotionally overwhelming. What were we supposed to do next? That was answered as well. On April 15th my mom and I attended the three day DAN Conference in Boston. That is when I found that I’m not alone. There are so many more parents out there going through what we are. The conference gave us so much hope for Andy’s future, and it also gave us answers to what is really going on with him physically. We found a DAN Doctor, an ABA program and help. We had Andy on supplements before we moved back. He was on a liquid multi vitamin and cod liver oil. Andy has seen his doctor and is now on 9 supplements including B12 injections. We are seeing great improvements. He is laughing and playing with his sister, and babbling. I can’t wait to see what happens when we start 40 hours of ABA therapy on June 21st. Statistics have shown that over 50% of autistic children that have started the diet, supplements and ABA therapy before age 2 have recovered. This is what we want for Andy, to have his label of Autism removed.

Andy's New Blog

2008-12-30T10:17:00.000-08:00

I have decided to move Andy's website to a blog. It will be much easier for me and less time consuming to update 1 blog. I am trying very hard to simplify my crazy life (lets call it a New Year resolution). There will be quite a few posts today as I will be coping over the old website and blog. Have fun reading.