The Autism Fog is Lifting

If you ask me about Alec's autistic symptoms I can give you a list of them.  I pay close attention to this list and look for any changes as we do his biomedical treatment.  I've noticed so many changes.  His eye contact is better, he's more focused, he's listening better, his language is exploding, he's using idioms in his language, he has conversations that are more in depth. These are changes I was watching out for, but recently I've noticed something unexpected.  It was unexpected because I never noticed it didn't exist.  It all started last week on the way to my parents house.  We were driving over the bridge that goes over the inter-coastal waterway.  He was staring out the window and then says, "Wow, look at all those boats".  At this point I didn't think much about it, but as the week continued he kept pointing things out to me and to his little sister.  I thought about it, usually when he stares out a window or looks around his environment he is "inside" his head...in his own world.  Now he was noticing the world around him.  When we got home from grandmas house we were playing in his room, a room that we redecorated months ago in an outer space theme, and he says "My outer space room is really cool!".  He then begins to look at specific decorations and talking to me about them.  When he had first seen his room after my husband and I had redecorated it he said "Wow, I like it" and that was the end.  He never mentioned his room again.  I think he just didn't notice his room.  It is truly like a fog has lifted from him and he can see his world clearly.  I can't even begin to imagine what that must be like, but I'm so happy that he's finally getting to enjoy all the little things that we sometimes take for granted.  

Cashew and Coconut Ice Cream

Alec's DAN! doctor wants us to increase medium chain fatty acids in his diet, but it's been so hard because he's such a picky eater.  There's only so many muffins cooked with coconut oil that I can give him and I don't think that's getting enough of it in him.  This is important for improving his brains function and can also help to open his appetite when it comes to trying new food.   In my latest attempt to get him to eat coconut oil I made a cashew and coconut oil ice cream.  He loves vanilla ice cream and only vanilla ice cream, but since he's casein free he can no longer have it.  I have bought coconut milk ice cream, rice milk ice cream, and almond milk ice cream, but he hasn't liked any of them.  I don't know what makes me think he'll like my cashew/coconut oil concoction, but a mom can always dream, right? 

This recipe is adapted from here

Vanilla and Strawberry Cashew and Coconut Oil Ice cream

1/2 cup cashews soaked overnight (discard liquid)
1/2 cup of unrefined virgin coconut oil
2 tbs raw honey
1/4 tsp gluten free vanilla extract
5 frozen strawberries
about 1/4 cup almond milk ( I only added this so my blender would blend the other ingredients and have a smooth consistency.  If you have an awesome blender you might not need this)

Add all ingredients in your blender and blend until smooth.  If you have a really awesome blender, like a Vitamix (I really want one!), then you're done.  If you have a not so awesome blender, like me, then I'd continue to the next step.

-Strain the cream through a fine mesh strainer so that you're left with a smooth cream :)

I like to put my ice creams in little paper cups in the freezer.  They each have about 2 tbs, which should be a good serving of healthy fats for my kids!

Occupational Therapy Effects

Alec started occupational therapy about 3 weeks ago and it has been wonderful.  He LOVES going!  Everyday he asks me if he gets to go to OT today.  The results from it have been great.  When we leave OT, that night and into the next day, he is SO calm and focused.  It’s amazing the difference I see in him.  His teacher has told me the same thing.  One day at school he was so quite and still that his teacher asked him is everything was OK.  He very calmly responded that he was good.

S0000000…I want more of this for him!  My husband and I decided to convert our dining room into a sensory playroom where he can go for all of his sensory needs.  We moved out our dining table!  So far we’ve covered the floor with large solid puzzle mats and got an enclosed trampoline.  I also put the slide  in there as well as the train table.  The train table I will convert into a sensory table.  My husband is planning on building a large ball pit from PVC pipes and netting.  I’m also going to make a large crash pad from a duvet cover that I have.  I want to have lots of bean bags, large exercise balls, and sensory balls to roll around on, crash, and bury himself as well as a cocoon swing.

I’ll keep an update on the progress we’re making… with pictures :)

Drumroll please....The results are in!

So, we finally got all the results from the tests/labs that Alec's new DAN! doctor had done.  Prior to receiving the results I had told my husband that I hoped his results didn't come back normal because that would mean that there would be nothing to fix or work on.  I was really anxious that it would be the case for us, but I didn't prepare myself for the opposite.  What if there was A LOT wrong?  Well, that's what we got.  I'm still kind of shell shocked, but what did I expect?  We're not dealing with a little vitamin deficiency...we're dealing with Autism.  A condition that is so complex and affects so many different aspects of a persons life.  How could I have thought it would be a simple matter of a deficiency here and a deficiency there.

So here it is...we have all of our puzzle pieces.  They are mistreated, worn out, damaged, and now we must fix them, polish them, give them the care they need so we can put them back together as a whole working picture. The puzzle piece symbol for autism is appropriate in so many different ways!

Let's start with the simple things.  Alec has vitamin A, D, and B-12 deficiency.  Vitamin A deficiency can cause a lot of visual sensory issues.  There have also been links between vitamin D deficiency and autism.  This is a good site about that.  Vitamin B12 deficiency is also commonly seen in children with autism.  Using the supplement Methyl-B12 has shown to have a profound effect on autism and other neurodevelopmental disorders.  Other issues we're addressing with supplements are deficiencies in Magnesium, Selenium, Cholesterol, and protein.

Alec has also tested positive for a genetic mutation known as MTHFR gene mutation.  He actually tested positive for 2 copies of this mutation which means that he received it from both mom and dad.  MTHFR gene mutation is not too uncommon.  Most people will never even know they have it.  This gene mutation is responsible for things such as heart disease, depression, schizophrenia, clotting issues, among other health issues.  In some cases though, a bad combination of the MTHFR genes will pair up and a person will end up with the inability to process metals and sulfates.  This build up, when combined with environmental factors such as toxins from food, cleaning supplies, and vaccines, can be one of the triggers for autism.  This genetic mutation also inhibits the proper processing of Folic Acid.  What does MTHFR gene do normally?  MTHFR is an enzyme that allows us to process Folic Acid.  It is a very complicated chemical model that shows how the body must process Folic Acid so that many other processes can occur.  It's a chain reaction and when there is a malfunction at one point, it effects the rest of the chain.  In a nut shell, the inability to process it properly leads to many other dysfunctions at a cellular level and that leads to many illness, including cancer, that plague society today.  It is also responsible for many behaviors that we see in children with autism and ADHD among other developmental disorders.  The way around this is to give the body activated folate.  This type of folate can be properly processed by people with this genetic mutation and can help stop the problems it's causing.  We are using Deplin to treat this in Alec. While the mutated gene can never be fixed we can bypass it with this treatment.

Alec also tested positive for PANDAS titers.  PANDAS stands for pediatric autoimmnue–neuropsychiatric-disorder-associated with- Streptococcus.  Children with autism seem unusually vulnerable to strep in a way that triggers increased obsessive and compulsive behaviors . Essentially what happens is the body’s immune cells (already on over-drive in autism), see the strep bacteria and mount an immune response.  They make antibodies to the strep bacteria (the way we want them too), but that is where things get off track. Those antibodies cross-react with the brain in way that triggers the OCD type of behaviors and other behavior commonly associated with autism.  It can also trigger tics and other odd movements.  Even if a child with PANDAS has not been sick with strep for months or years, the strep bug has decided that it's OK to cohabitate.  His body keeps the bacteria in check by keeping antibodies levels high.  The antibodies interfere with brain function and create these behaviors.  There are many different ways of potentially treating this.  We are treating it with antibiotics, antifungals, and antiviral medicine.  Hopefully it will work. 

Lastly, and the thing that impacted me the most was the results from his viral immunology testing.  First, his immune system is very low.  This needs to  improve.  I've been given four options to study about before deciding which one I want to do.  Secondly, his body has very elevated levels of Measles and Mumps virus.  This is from the vaccines he received.  Normally, when you receive a vaccine you process it and you remain with a small enough antibody that if you were to ever come in contact with that disease your body could prevent you from getting it.  Alec's body did not process the Measles vaccine nor the Mumps vaccine as it should have.  Due to the elevated levels of these viruses his immune system is busy fighting these disease that he actually doesn't have.  This is with the already limited immune system that he has.  To me this PROVES what I've always felt is true.  Not that vaccines CAUSE autism, but that in some individuals vaccines can TRIGGER autism.

It's easy to see how it all falls together.  Alec was born with a genetic mutation that prohibits him from processing Folic Acid as he should.  This in turn prevents him from properly ridding toxins and metals in his body.  Then you add extra toxins from food, environment, cleaners, vaccines, and we've compounded his issue and introduced more toxins into his body that he will not be able to process properly.  Then, because of all of this he now has a weakened immune system.  He's constantly sick and given round after round of antibiotic by our trusted mainstream medical professionals (sorry, couldn't help it).  This works on destroying all the healthy flora in his intestine and leaves him with a dysfunctional gut that no loner processes foods correctly so his body can receive the vitamins and nutrients it needs.  He contracts the common strep virus.  His body begins fighting it, but has an auto immune response (probably because his entire system is off balance)  and also begins attacking itself...the brain.  Now we see more "autistic like" behaviors come out.  Its easy to see how this could have happened with him.  Now we just have to undo all this damage...

The Good...

I'm so excited!  This has been a great week.  Alec's teacher told me on Tuesday that for the first time ever, he came in in the morning, sat down for morning work and wrote 5 sentences without any prompting or reminders to get back on task!  Then, in the afternoon, he completed all of his challenging math worksheets with very minimal prompting.  The week has continued just like this!  This is a big deal because he'd gone from completing work (with a lot of redirection) in the beginning of the year, to not doing any work at all (prompting or no prompting) as of a few weeks ago (I think it was due to his body detoxing), to doing work with minimal or no prompts.  To me, this is a fist sign of success!  Happy day! 

In the beginning...there was gluten

Well, we are finally 100% GFCF (gluten free/ casein free)...it took us a looooonnng time.  I THOUGHT we were totally gluten free, but I didn't realize that all of our "little blips" were not so little.  It takes the body months to completely eliminate gluten, so each little blip would set us back a few months.  So I have never fully seen Alec without gluten running in his system.  Regardless, putting the blips aside, I have seen great progress regardless of our slip ups.  Pre-gluten free he was super hyper, very impulsive, it was difficult to talk to him because he was so "out of it and distracted".  His eye contact was poor and his language was significantly delayed.  Even though he had all of these behaviors he was still a  very sweet and affectionate boy, just not in control of his body.  Now, he wiggles instead of rolling around during circle time.  His eye contact is fleeting instead of none at all and his language has progressed so much.  Initially the switch to GFCF was difficult, but it was just a matter of finding the right products.  Once we did that it became very easy.  I found a substitute for all of his favorite foods.  I would say that my life savers on the GFCF diet have been Udi's white bread (fabulous), Bisquick's GF baking mix (use it to make pancakes, biscuits, chicken nuggets, sugar cookies and pizza crust), and ANYTHING from the brand kinnikinnick (their stuff is so awesome I sometimes doubt it's really GFCF).  Now that we've been on it so long it's become second nature.  The part that I struggled with the most was when we were out and about.   Trips to the mall, movies, birthday parties, etc.  Now what I do is that I always pack a meal and snacks just in case we're out longer than expected.  I pack a peanut butter sandwich when we go to birthday parties as well as a GFCF cupcake.   It helps that he's such a picky eater because he wouldn't have wanted the pizza served at most birthday parties anyways :)

GFCF Strawberry Muffins

Yummmmm!!  Organic strawberries were on sale yesterday... buy one get one free :) !  Bought my two pints, got home and realized WHY they were on sale.  We needed to eat them very quickly.  So, I decided to try out a new muffin recipe with them.  At first I thought they would be dense since my muffin pan felt like it weighed 100 lbs, but surprisingly they were fluffy, moist, and super delicious!!

Strawberry Breakfast Muffins

3 level cups All-Purpose Gluten-Free Baking Flour
(make sure your blend has baking powder, salt, and xanthan gum.  If not you will need to add 4tsp baking powder, 1tsp xanthan gum, 1tsp salt)
3/4 cup Organic Brown Sugar
1 cup unsweetened vanilla almond milk
3/4 cup Coconut Oil Unrefined 
2 large eggs 
1 1/2 cups strawberry slices
3 tbs Organic Ground  Flaxseed

  -Preheat oven to 350
-Grease or line muffin pan
-Puree strawberries
-Blend flour mix and brown sugar
-Add all other ingredients and mix by hand just until blended
-Fill muffin pan to the very top
-Bake 35-40 minutes (oven times may vary)  

This is my homemade "magic bullet".  It's just a mason jar with the blade attachment from my blender.  Just don't overfill or put hot liquids.  Attach to your blender base and blend away!  It's small and easy to clean!

It has to work....it has to.

Does it get better before it gets worse?  I'm noticing Alec has been more spacey and it's harder to get and hold his attention.  That's one version of him.  Then he's super impulsive & his body is wiggling all over the place.  That's the second version of him.  Then there's the regular Alec, who is interactive and pays attention to what's going on around him.  I now see that version of him less than I used to.  I hope that this is the worse before the better and that I'll see some kind of break through soon.  We are now taking all the supplements he was prescribed (all 12), but we're not up to maximum dosages yet...

A glimpse at autism

Tonight I had one of those moments where you briefly see your child through someone else's eyes.  Most days I feel like Alec is only "a little bit autistic".  In most social situations, with my control and guidance, I think others can't tell he's autistic (maybe I'm delusional).  But today, when I saw him, he seemed "very autistic"

We went to church tonight and before I dropped him off in his kids class I reminded him not to "play in his head".  This is the term we've come up with for an activity he enjoys unlike any other.  He usually becomes very obsessed with a tv show and watches it over & over.  When he's not watching the show, he's acting it out in his head.  To an outsider it looks like he's doing some strange body movements & mumbling to himself. I know what he's doing...he's reliving his favorite scenes.  He loves it so much & will laugh at all the funny parts in his reenactment.  I keep talking to him about things that are appropriate to do at home and things that are inappropriate to do in public.  I explain to him that I want his mind to be focusing on the things going on around him, being in the moment, when he's out in public.  I know he understands me, but I think that at times he can't control it.

Tonight, as my husband and I peeked into his church classroom, we saw him spinning in circles, making strange jerking movements and laughing to himself, while the other kids were playing board games together.  Clearly, he was playing in his head!  That was my glimpse of him on his own without my reminders and guidance.  I know it's ok at this moment.  That's him right now.  I love him, every bit of him, but I don't love the obstacles autism puts in his way.  I want him to find passion in other things he likes to do and that give him the same pleasure he gets from "playing in his head".

Out with the plastic...in with the glass

     In trying to make our home clean of many toxins, I decided to get rid of all plastic food storage containers as well as all plastic cups, plates, bowls, forks, spoon, etc.  My amazon order finally arrived! Yay!  I ordered a tempered glass cup for Alec that has a silicone lid.  I like him to use a lid if he's not at the table.  Emily got a tempered glass sippy cup with a protective silicone sleeve and they both received tempered glass bowls and plates.  It was a difficult process throwing away all of my gazillion plastic children's cups, plates, snack traps, etc.   I kept thinking "what if I need it?  Maybe I should store it in a closet?" But I decided "OUT with the chemicals!"  I repurposed a few that could hold crayons and miscellaneous arts & crafts supplies.  I knew Alec would be fine handling his new dinnerware, but I was worried about giving glass (however tempered it might be) to my plate tossing, cup slinging toddler.  So, I decided to sit with her on the floor and have a picnic style dinner, hence minimizing the traveling distance from the high chair to the floor.  Besides repeatedly putting her foot in her bowl she did just fine.  I think I might get rid of the high chair and get a picnic table for the kids to eat at when we're not all sitting down together.

1st DAN! doctor appointment

Yesterday we saw a DAN! doctor for the first time.  After reading about them for so long, I couldn't believe that we were finally going to see one!  It was an amazing experience .  What made it so interesting was that I began to see all the autistic characteristics as  symptoms of other things that were not functioning properly in his body instead of autism being the cause of atypical behaviors.  Things that could be FIXED with proper treatment!  This is so different from the traditional way that autism is viewed and treated.  Instead of treating his symptoms  (i.e. language delay= speech therapy) we were going to begin treating the root causes that created the language delay.  That’s not to say we will stop speech therapy, it’s very important, but therapy has its limitations.  We are healing his body and in turn healing his mind.  This was refreshing and uplifting.  It gave hope to a situation whose hope was limited. 

So far, his treatment consists of vitamin and mineral supplements as well as medicine to treat yeast overgrowth in his gut.  Diet is also important to his treatment.  Aside from being completely 100% gluten and casein free(GFCF), we are also increasing his intake of healthy fats such as nuts and coconut oil and limiting his sugar intake.  I had already eliminated any food coloring from his diet.  We began treatment right away while we wait for the lab results.   I'm giving each new supplement 3-4 days apart so I can keep track of any changes.  The good, the bad, and the ugly!  Now we wait...