Methyl-B12

Doc suggested we start Methyl B-12 injections.  I was a little anxious about injecting anything in Sweet Girl, having needles like that in the house and, well what is Methyl B-12?

So…an article was referred to us as a reference.  I love it when doctors give you material to read instead of trying to convince you or prescribe you something without really explaining it…so, high five to those doctors that understand crazy visits and the parents need to process info at a later date with great reading material.  Thank you!

If article reading is not your thing and you have found yourself wondering about Methyl B-12 then hop aboard the magic school bus with me.

Studies have shown that those expressing ASD symptoms often have transmethylation defects.  “Since every cell in the body expresses the folate/methionine cycle, defects in transmethylation can affect vital biochemical reactions at many places in intermediary metabolism.” (McCandless).

“Intermediary metabolism is the enzyme catalyzed processes within the cells that extract energy from nutrient molecules and use that energy to construct cellular component.” (thank you biology online)

So…methylation is essential to the construction of cells.  I am SO oversimplifying and maybe I don’t really understand….please correct me if I am wrong.

Brief ride over, not so magic…sorry.

From the info, I conclude that my Sweet Girl, exhibiting ASD symptoms, may need some assistance “methylating”, so in comes the methyl B-12 injected subcutaneously into her rump because studies have shown that is where it is most effective every three days.  Hubby does it.

Methyl B-12 helps at the cellular level and the primary reported responses were improvement in “executive function, speech, language, socialization, and emotion.” (McCandless)

Sweet Girl has been receiving injections for about a month now.  We have had a hard time maintaining the every three day schedule, but I have noticed improvements across the board in her behavior and efforts to communicate.  She is making more word like sounds.  She is increasing her attempts at imitation as well as increased attempts at interaction with others.

It is difficult to associate what benefits we are seeing from the injections and what may be from dietary changes, supplements, etc.  It does claim that it is most effective in the long term.  There are mentioned side effects in the articles all of which are behavior related.

I am all for anything that may help and this was one of the first things that the doc recommended.  We hopped on board…at least worth a try.

Just Give A Little

So…in hunting for poop info I found a website about biomedical assistance “loans”.  The website actually found me.  We found each other really and while I love fresh ideas and I like to help others, I am not in love.

lend4health is a website to help individuals and families find the money to fund their needed biomedical tests and therapies.  The money is donated by private lenders and returned to the lender at an agreed upon time with no accrued interest.

I am a firm believer in the biomedical approach to treating autism.  So, I am extremely grateful and have seen first hand the benefits of all things biomedical.  I want all kids and adults alike to benefit fully from this approach and that is why I think YOU all should JUST GIVE A LITTLE.  Do you really need your 5 bucks back?  I mean really…just give it.

Lend 4 Health is an awesome idea and is already helping people, but let’s Donate 4 Health…just give a little.

The Evils of facebook

Yes…I was devoured by a new found addiction to facebook!  I know I am SO behind the times…especially when I realized that not only are my parents on facebook, but my GRANDPARENTS are on facebook!  I realized it was time that I surrender to the inevitable and check it out.

A giant vacuum of time consumption and nosey curiosity.  While I found friends from all phases of my life, and relived a couple of fond and not so fond memories, I went into a time warp and accomplished absolutely nothing during my free time!  New sewing, reading, I hardly even worked (part time job from home) and no posts or replies to great comments and questions!  Apologies.

I am now in recovery, facebook recovery.  If you don’t know what facebook is, don’t try to find out.

So many things going on: I think we discovered the culprit of the nasty diarrhea, started OT, tried some new products, follow up appt with doctor tomorrow to find next steps…I am leaving you with that.  I am sure you are on the edge of your seat filled with great suspense.  Try to contain yourself.

My Sweet Hubby

He is wonderful.

As you may know…we have been having a poop problem with Sweet Girl (grandma suggested a liver function test which I think the dr. plans to do).  Last night I went out and while I was gone she managed to dribble poop out of her diaper as she walked across the living room and stuck her hands in it.  Hubby cleaned it all up (he had to because I was gone) but he did not complain about any of it!  He did complain about the nastiness of it, but never in anger or frustration.  He is a big hairy dude and by looking at him you would not immediately mark him as extremely compassionate and understanding. [Insert Awwwww]

This morning I hear Missy, “Mom! She pooped and it is leaking out!”  Hubby and I both take a deep breath and I mentally prepare to take care of it, but he was up and quickly out the door.  I hear, “I need help, now.” He was calm and matter of fact and so I too was on the scene.  He bathed her and I pulled the sheets and scrubbed the carpet.  Somehow she manages to get it in her hair and on bazaar miscellaneous items…I don’t know why I am surprised, but I always am.  End side note.

I am frustrated.  I am even a bit angry.  I have cleaned up so much poop and I have no idea how to help her and I am frustrated that my little girl cannot talk and I am sad and I am sorry for me.  Total down in the dumps, sad, stare at wall, major human moment.  I am not proud…and we all have our moments…I know.

Act II: The girls are eating breakfast and I am on a stool staring at the sink-dealing, trying to envision life in a few years and what does the future hold and wow I am a mom and just random stringing thoughts making little sense but evoking much emotion.  I immediately reset to analyze mode and start talking.  Hubby says, “This is just the way she is right now.  It is ok and you just have to laugh at these things.”  Oh the wise man he is (and I do not say that sarcastically).

This is all part of our story.  I love my hubby.

No more poop.  I sorta promise.

Clarity or Lack Thereof

My head is spinning.  I am the blessed mother of a two and a half year old sweet girl.  She exhibits so many of the symptoms of autism and I absolutely want what is best for her…therefore, I have read and read and Read and READ and READ some more and everyone has so many opinions.  The Joy of Autism just grounded me.  I was so smothered by this observation and that and all of this over here that somehow I forgot the richness of who she is.  The peace and contentment carried in her being, the joy at seeing me in the morning or anytime for that matter.  The hugs and kisses, the laughter and giggles, the silly things she does that are “odd” but so very unique and special and part of who she is.  She is human and craves the same things all of the rest of us do…to be loved and accepted.  Yes she is only two, but instead of trying to “fix” her and do everything to make her “fit” in the world, it is my responsibility as mother to love and teach and I have forgotten in the mess of diagnosis and this therapy and that.

Whatever the “diagnosis” she is still human, she is still my sweet sweet baby girl and she needs me to be her momma.  A privilege really.  I believe she teaches me way more than I could ever teach her, all of my kids do.  I love being a mom.

It is also my responsibility to raise my children to develop themselves and pursue their dreams, to respect and love others, and to be as independent as possible.  Independence-whether it be putting their pants on alone, working a job, or whatever else it may be.  The independence gives self-satisfaction, happiness, ability, etc.  What can I do when the typical societal systems and my alternative methods of thinking leave me stranded when it comes to helping my sweet girl exist comfortably in a society of so called “normal”.  Society and people have expectations.  I don’t even really care about the expectations, but I want my sweet girl to have a chance, to have an opportunity to make her mark in the world, to communicate, to love and be loved, to experience.  I am at a loss as to how to best help her when I can barely understand what she is asking for.

Oh how I love that little girl.  I love her big blue eyes and her giggles, and I so desperately want to know that when I say I love you she understands me.  It is not really about me, maybe I don’t really quite understand my job of mothering or maybe my expectations of everyone (myself included) are distorted, or maybe I have my definitions of learning, communication, opportunity, joy, etc all skewed or I have allowed them to become mutilated and desensitized by a merciless society of selfish ambition.

Maybe all of the above or none.  Screw the cookie cutters and little boxes made of ticky tacky.  Thank you Estee for reminding me that we all feel and we all are…I SO needed that today.

Is Diarrhea Ever Good?

More poop…I know.  Not apologizing.

Sunday morning is usually hustle and bustle, hop in the car, grab some iced coffee (totally addicted) if we have time and head to church.  Not yesterday.  Missy literally spent 90% of the day screaming…more about that later if I feel like re-living it enough to write about it.  Sweet Girl was out of sorts and had diarrhea all day!  In my typical analytical fashion, I set out to discover the source.  I am so not a scientist and I do not have test tubes, microscopes, ph paper, petry dishes so I have no idea why I even take the time to think about it because I know for a fact that I will never know what caused three nasty bouts of diarrhea on Sunday, July 13, 2008.  But…for some unknown reason I do it anyway and I drag hubby down with me.  Hmm…maybe it was the kidney beans we ate last night for dinner?  Or the blackberries from the farmers market?  She gets runny with blueberries…maybe she and the berry family don’t jive?  Her poor bottom.  She did not really eat anything else out of the ordinary.  I hate changing sheets and yes, I do A LOT of laundry.

Instead of just moving on, I proceed with some very accurate scientific testing.  Since blackberries were one of two suspected culprits and I did not want to let them go bad in the fridge.  They are not known for shelf life, or fridge life, or plant life…so delicate and tasty-and expensive!  With all of those factors in the back of my head, I put on my lab coat and filled her with as many blackberries as she would eat last night after dinner to see if this morning she would be runny again.  No!  Totally dry as a matter of fact!  I am once again puzzled and move on to today’s set of issues.

I must add that I allowed the thought that maybe it had something to do with the supplements…maybe too many?  I gave them all to her and then the thought crossed my mind- Maybe the diarrhea is good.  Is it getting yuck out of her sweet little body and helping her in the long run?  If so, I should do laundry with a smile.  I am going to chose to believe in the good of diarrhea.

Unfortunately, the scientific testing will continue.  I just can’t help it.

Far From Sweet

Sweet Girl’s poop is N-A-S-T-Y with a capital gross.  It always has been…runny, smelly, clumpy, funny colored, undigested food (she doesn’t really chew so she does not give her GI tract much help), slimy…you name it.  It is now a pale yellow.  I am slightly alarmed.

I don’t normally like to discuss fecal matter, but it is a kiddo so it makes it a little easier.  Adult male excrement would be a whole different story.  Anyway…I have discovered that I am not the only one inquiring to bazaar ASD/SPD/GFCF etc poop.

There is a whole blog dedicated to pictures and discussion of bazaar and super curiously nasty body waste!

http://gfcfpoop.blogspot.com

If poop is your thing and you are not about to eat…go check it out.  Actually, it did offer some helpful advice in analyzing our several messy diapers per day.  They are all different and most catch you off guard.  When she is in nap you can walk by her door and smell if she has pooped, and then you roll your eyes, take a deep breath, brace yourself and enter with caution.  So often the poop has not remained in the diaper, but has freed itself and smeared, leaked, dropped or squished out.  Is it sad that I get excited when nap is over and poop has stayed right where it was supposed to?  It has gotten worse since we have changed her diet.  I wonder if there is another allergen in her diet that is bothering her?  I have seen solid poop along with the runny and slimy, but all very inconsistent.  I am very interested to get her allergies tested at our next appointment.

The poop has been pale yellowish several times over the last week.  Mostly formed, not runny, sometimes smushy unformed, but pale yellow.  We just started probiotics and I wonder if they are doing battle in her belly with the yeast?  I could not find a straight answer when I Googled “pale poop”.  Haha!  She does poop several times a day, is extremely gaseous, but on a positive side-her breath has improved significantly!

I have changed her sheets way too many times over the last two weeks.  The things we do for our children.

It’s hot.

Yes…it is disgustingly, nastily, grossly hot outside.  All of the sudden summer hit.  Woa.

The 4th of July was great fun.  Friends over, food on the grill and lots of fireworks.  They are legal where we live and several of our neighbors spared no expense in creating a lovely show for themselves.  The great thing is that we so conveniently sat in our yard and enjoyed their hard work.  It was loud and smelly…but an awesome display of fireworks.  I bet I could say the best I have ever seen.  Little Man hardly noticed.  Missy loved it all and was such a big girl and Sweet Girl really had a hard time.  She did not scream, but stayed VERY close and and stared.

I should say that as friends started arriving earlier in the day she started bouncing off the walls.  She seemed to love every minute and had to greet everyone and let them all know she was there.  She traveled around the house in hyper speed, ate A LOT and had a great time.  Right about the time it was getting dark, she started having some minor melt downs.  We all went outside for tons of flashing lights and extremely loud noise.  We did not really set her up for success, but we were able to do the activity fully and enjoy it as a family which was the goal.  She did pretty well and we all had a lot of fun.  Yeah United States and Happy 4th to all!

The next day was not so fun.  She was extremely clingy, cried about everything, wanted something and then did not, many-a-meltdown, and just seemed totally out of wack.  It was really hard to watch her and not really know what to do to help.  She seemed very uncomfortable and did not want any consoling.  It was a rough day.  Normally we deal with bazaar behaviors and a primal form of communication but a generally happy sweet natured little girl.  Saturday she was not happy at all and I was sad.

Sunday was better, much better.

I like to reflect and analyze everything and it drives hubby crazy.  I want to figure out what caused the problem and avoid it the next time so as to remedy any future situations ( I am especially bad when it comes to food and restaurants).  All day Saturday I was trying to decide if she was just tired, or her body was trying to deal with the over stimulation, or maybe she was cutting more teeth ( I will NOT put my fingers anywhere near the inside of her mouth in fear of any and all wounds…so no way of ruling this one out), something diet related, or any other miscellaneous possibility.  Maybe she just needed to get some screams and tears out.  I want to avoid sad days.

Man O Man…it is hot.  Thank God for the sun…and the air conditioning.

Smile!

Say Cheese!

Exactly what you get when you say: “say cheese!”.  Oh, she is so silly.

She loves people, puppies, places, hummus (by the fist full ugh!), colors, ceiling fans, lights, dancing, music, shoes, her daddy, the swimming pool, and she absolutely loves playing outside.

She regularly reminds me to live in the moment, enjoy the simple things and most importantly-to laugh.

Has it really been almost three weeks?

I think we are heading into our third week of gluten, wheat, dairy, soy free eating.  Well, sweet girl has.  The house has for the most part…bun-less burgers and hot dogs, rolled lunch meat minus the bread, no crackers or cheese…the grocery budget has undoubtedly grown significantly, but for the betterment of everyone.  She is eating things like zucchini and green peppers!!  It took a few times of putting them on her plate, but when she sits down hungry and that is what is there to eat, well, she eats it!  Imagine that.

Breakfast: Cereal, protein powder, almond milk, vitamin, enzymes and an almond butter smothered rice cake

Lunch: Calypso Cafe-Yum!  Chicken, fruit, and rice

Dinner: mango, kiwi, peppers, avocado, scrambled eggs, nitrate-ite free sausage patties.

She was not a huge fan of lunch as she wanted to sit in a big chair and not a highchair so she could hardly get to her food and she was mesmerized by the salt and pepper shakers and some straws.  She ate the rice and finally the sweet potatoes off of my plate with chicken stirred in.  Gotta get that protein.

Hubby ordered us a pizza after the kids went to bed.  I have been religious about sweet girls diet, supplements, etc. and I know I would really benefit if I could restrain from snacks and desserts and rally in with this diet change.  I must confess an awful sugar addiction.  It is HORRIBLE…rare do I fully savor the flavor, rather a savage in need of my next fix really.

I think we may be tackling the yeast beast next.

Behavior has been awesome!!  NO…yes, I said No tip toe walking, no arm flapping, no spastic behavior, few things make it into her mouth…woohoo!!  I need to brave it and take her to the mall to see the extent of this new found calm.  She is still extremely busy and so many other things, but I am noticing the edge being taken off of their extreme highs.  She is attempting to talk significantly more and she is initiating more interaction with sign and gestures.  I started noticing some regression with verbal today.  We also did our 3rd methyl B-12 injection today.  More on that later after it has had some time to work into her system.