it continues...February 2010-May 2010

Once we had David's blood work done...I was so anxious to meet the Dr. and get the ball rolling on a battle plan for treatment. 

 

On 2/2/2010 David and I met our new Dr. to help us treat David with natural medicine. She is a pediatrician who practices an integrated approach. We took an hour and she answered my questions, we researched vitamins on-line and she got to see David be David. I got the answers that I needed to feel like I was moving forward in our journey to heal David, so I was good. I had more questions soon enough, but now I write them down and email her and it's nice to have that connection. Test findings were:

     ~Vitamin D was low, but within referenced range

     ~Lactic acid was high.

     ~Ammonia was high, but within referenced range

     ~David had a gluten intolerance, casein/milk was not a concern but Dr. suggested a GFCF diet for 3 months to see how he would respond.

Attached is an interesting article on the Opiate Theory (among others- in case you'd like to do some light reading.)  Basically, one of the reasons we decided to stick with the GFCF diet is because of an interesting section in the book I was reading. 

     ~Even if our kids aren't allergic to gluten or casein they can have a different kind of response which would come from only being able to partially breakdown the proteins of gluten/casein (as they are very complex). If not broken down properly into simple amino acids for the body to use, the "chunks" of protein left act like neurotransmitters that act like opiates (morphine-like substances) in our kids brains. This may be why a child is a milk-a-holic or won't stop eating tons of cereal/cookies etc. anything else with sugar/gluten. They can actually get stoned off of it.

     ~I was asked recently asked if I noticed a big difference in David when we went GFCF. I don't think it was a major difference, but it was enough. I was also asked why we have stayed on the diet if the difference isn't that noticeable.  The bottom line to me was this : David has trouble ridding his body of things it needs to get rid of, I don't want to make it anymore difficult until we get his body healed- so we are staying GFCF for now.

The Battle Plan- Start GFCF diet and start supplementing:

Vitamin D & Omega 3's = Arctic-D Cod Liver Oil by Nordic Naturals is what we chose. 

Multi-vitamin free of gluten/casein that had no artificial colors/sweeteners. 

      ~We started with Super Nu-thera by Kirkman as it comes very highly recommended, but since David's supplements were in juice/milk and he didn't enjoy the taste (more went to waste then drank.) We decided to switch to Vita-Kids by Douglas Laboratories. David enjoys these vitamins to this day. I linked you to my favorite site to get these vitamins- excellent Customer Service! 

Probiotic to help with "gut support", we went with Culturelle. 

Zinc was recommended, we went with a liquid.

Antioxidants were also recommended (These are tart, they go best in juice (one of our favorites).
Alpha-Lipoic Acid (ALA)- we chose Source Naturals we use a pill splitter and crush between 2 metal measuring spoons. 
Vitamin C- we chose a powder by Nutricology, easily mixed in juice. 
Digestive Enzyme (to be given in PM- not with Probiotic!) I found one that specifically targets the GFCF proteins just in case. 

On 3/15/2010 I had my first meeting with the school to discuss David's progress. We moved him to full day and he would now attend 5 hrs a day 4 times a week. We also had a motor skills assessment done and added occupational therapy once a week in school. A sensory assessment was done as well, it was observed how visual David was and his behavior changed dramatically once a visual schedule (PECS) was implemented at school!

     Comments from David's report card: Counting to transition David between activities is really working. He has learned to share and request toys from peers. David responds to his name and stops what he's doing when he hears his name. We are working on the screaming when he is mad.

On 4/7/2010 We decided David would benefit from ESY (Extended School Year) through July, so he would have less time in between end of school and start of next school year and hopefully retain more of what he had learned. We also started to use the PECS system at home to help with transition, the school provided everything I needed to get started and even helped with laminating whatever I needed.

4/20/2010 Follow-up regarding GFCF diet w/ Dr. recommended to try re-adding a bit of milk to David's diet and see what happens. We tried yogurt and eventually string cheese...David became exceedingly hyper over the next week. We decided to remove casein/milk until a later time.

And so it begins...September 2009-January 2010

I hit the ground running after I came out of my "fog" and this is a glimpse into that craziness. I have a purpose in this life to care for my family and be the best wife and mother I can be. By God’s grace, dang-nabit, that’s what I intend to do! 

I know we are all given gifts in this life to use to bless others, I (by nature) am a care-giver, always have been. My Mom encouraged me to become a nurse, she saw that in me. Especially when I took time off to go to her chemo treatments and bone marrow biopsies, I watched and I asked questions. I think my gift is for my family (at this point and time), I become to emotionally attached and would wipe myself out if I was a nurse to any other than my family.

On 9/4/2009 David was diagnosed with Pervasive Developmental Disorder (PDD-NOS) it was suggested that I take him to the school district to be evaluated for developmental preschool.

On 10/2/2009 David and I had our evaluation at the school district. I sat in a classroom with many adults who were there to observe David's behaviors and try to engage him in any of a number of specific activities to determine cognitive abilities, motor skills and such. I then went to another room to complete a few questionnaires (BASC-2, GARS-II, ABAS-II etc.) about David's speech, motor skills and social/emotional placement that I notice as his parent. All this while David met with the speech therapist and occupational therapist to get further information on where he was developmentally.

     

     Findings from David's evaluation: Semi-cooperative. Paid little attention to visual stimuli in the room, went straight for book he was familiar with. Brief engagement with adults and toys offered, immediate return to chair w/ book. Tendency to echo verbal cues given, several times. Fixated on Bambi book, continued to quote lines from Bambi continuously through evaluation. Separated from mother easily to leave room with teacher and speech pathologist. Uses 1-2 word sentences (accurately produces p,b,t,f,g,d) though inconsistently...reduces consonant blends within his connected speech making it difficult to understand him. Communication skills significantly below age expectations. David was excited to see new toys in therapy room, was noted to pick up these toys and touch to area between top lip and nose. He did not appear to be smelling the toys. Easily distracted during formal testing. Eye contact minimal. David has difficulty expressing his emotions. He has difficulty empathizing and reciprocating emotions (will receive hugs from family, but not give them).

On 10/15/2009 it was determined that David qualified for the school's special services and he was enrolled in Developmental Preschool. We met and discussed his IEP (Individualized Education Plan) based on the observations of the speech pathologist, occupational therapist, teachers and psychologist. It was also recommended that we have David formally evaluated for autism.

 

On 10/26/2009 David started his first day of Developmental Preschool. David would attend for 2.5 hours a day 4 times a week. The bus would pick him up right outside our home! Momma tried not to cry as he left for school that day. It was all she could do to keep from following the bus like a crazy stalker lady to make sure he made it safely to school …3 minutes away.

David excitedly waiting for the bus on the first day of school.

12/2009- Yet another ear infection/head cold/sinus infection. David has had 6 previous to this, all starting around 1 year old. Amoxicillan doesn't really work anymore. We have to figure this out so we can get his body working properly. 

     ~I don't think putting tubes in the ear will solve the problem because it just treats the symptom and opens a sterile environment (ear) to the possibility of infection. Continuous infections like this are a major red flag to us, be in tune to your child, there may be an immune system issue.

1/18/2010-  First blood draw for allergy testing. I cannot tell you how important it is to call ahead and find someone who specializes in hard draws/children! When David was 18 months, he fell in his room and split his ear open on his bookshelf. He needed 6 stitches. He had to be pinned down by 4 nurses! Daddy was physically and emotionally spent after that visit (Mommy was at work and couldn't leave) Blood draws can be hard, and not just on the child but on the parent too (I suggest Passionflower Vine for anxiety). We are blessed enough to have someone at our local lab that worked at Children's Hospital for a number of years, she is the ONLY person we will have draw David, because it is an emotional and physical feat of huge proportion!

On 1/22/2010- David was formally diagnosed with Autism (Autism Spectrum Disorder) by a neurological psychologist. David's school was updated on his diagnosis. The spectrum is so large (Goliath) that the number of children (mostly boys) went from 1:10,000 (in 1983) to 1:150 (in 2008). Interestingly enough, autism increased when the number of vaccines increased. Our environment's (in our home and in our world) become more polluted too, it really all plays a part, it's not just one thing. 

      

     Findings from David's formal evaluation: engaged in WPPS-III Block Design subtest, unable to imitate designs presented. Even with 2-3 block designs and repeated demonstrations, unable to copy designs. David would initiate his own play stacking blocks and watching them fall. Unable to maintain focus on tasks, David commented, "Now for toys." Marked impairment in nonverbal communication such as eye contact or facial expressions. He does not seek out opportunities to share accomplishments with peers by bringing/showing something he has done/made. He doesn't point out objects of interest to him. 

The family dimples...

My Valley of Shadows...

 I don’t remember much about September through December of 2009. I do remember coming home and talking with Troy, I was beside myself. We went to bed that night, and I couldn’t stop crying. My prayers for David being a husband and father were very blurry. His future was unknown and the questions “How could we have prevented this?” “What could we have done better?” “What did we do wrong?” they were all haunting me. 
 

I did manage to get David enrolled in school after he was evaluated at the school district.

Needless to say, those 3 months were a blur, I got up, I worked a 40+ hour week, I spent time with my family, I occasionally ate and I went to bed.  I was on auto pilot.

My world began to revolve around David. I had to get answers and educate myself to figure this out. I was basically a very fast train without brakes.

I was depressed. I wasn’t thinking bad thoughts, I just felt like I had lost control of my life and the plan I had for it.  I’ve got news for you…it’s not our plan in the first place!  Jeremiah 29:11 - “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”

I remember digging around on the internet on WedMD and other sites tinkering here and there for an answer of how I could “fix” my son. I landed on Amazon and found the book, ordered it and waited. It came right after New Year’s 2010. I dove right in and read cover to cover, I highlighted anything that stood out, I took notes and wrote questions down, then went digging for answers after that to back up what I’d read. It could have been any book and I probably would have done the same thing, but it was this book and it had a direction for me, helped me get my feet on the ground and helped me to start to focus again. Jenny McCarthy has really shed light on autism and maybe that’s why I was drawn in, she’s been through some scary stuff with her son, but she was strong and didn’t take NO for an answer…I knew I wasn’t either, so I sided with her approach (with less swear words).

 

Learning about the diagnosis of developmental delay can send you spinning, the loosing control feeling isn’t a fun one, especially for a mother of two boys, who thinks she’s got it all together.

Gradually, it made sense though, why David was so non-compliant and difficult in public situations. We just didn’t go out as much due to his screaming or strange behaviors and my fear of him just running off, since he didn’t seem to care where Mommy or Daddy were. There was no sense of danger or empathy for that matter. 

I remember one night we had given David a bath and I came up behind him to wrap him in a towel, he jumped and hit his head square at my nose, I heard a crack and tears immediately came to me. I started crying, it hurt really bad. Troy was trying to show David that he had hurt Mommy and David could care less, he had no empathy for the fact that Mommy might have a nice shiner in the morning, or end up looking like Penelope.

Once I had direction, I still didn’t have control. I started to suffer from anxiety pretty bad and it was beginning to affect my work. I would sit and stare at my computer and cry, for no reason. I went to the Dr. and of course, I was prescribed Xanax, or whatever it is they hop you up on to calm you down. I had a crossroads that night, Troy was worried about me too. With my family history, I knew medicating the problem was NOT the answer! I had finally realized I should maybe be praying a bit more than I had…doh! (Homer moment.) It was clear to me then, that I needed more time for my family and immediately applied for leave for my mental health, the care of my son and my family. I ended up working 32 hours a week for about 9 months. God has blessed that decision from day one considering we need both of our incomes to make our household run, we’ve been cared for and taken care of without explanation as to where it came from…hmmm. James 1:17 “Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.”

David vs. Goliath (Autism)

I am simply the Mom of a boy who has been diagnosed with autism. I am on a journey, along with my husband, to recover our child to the best of our ability.  With the help of doctors that will help us treat him naturally to remove toxins and help his body heal through vitamins, supplements and lots of love.

It's now been 495 days since we learned our son David was developmentally delayed. Going into the well child appointment, I was excited to talk about his potential. David has known his ABC's, numbers 1-20, colors and shapes since 18 months. I'm thinking he's a GENIUS and I get the news that instead my son is developmentally delayed and I'm knocked for the biggest loop of my life.

In the months ahead I see my dreams and wishes for my child slowly go out of focus, like looking through a window on a very rainy day. I have no idea what to expect or how to handle the news I've been given. 

With David as our first child, we didn't really have anything to compare to for behaviors, he was too young for school, seemed to play alright at church and we didn't really see it until it was handed to us on a platter, this was not something we wanted to believe. The lack of eye contact around two years old or so, the rocking on the couch, lining up cars on the window sill and carefully watching the wheels as he rolled the car slowly back and forth. Realizing that playing with kids was not the same as playing around kids. David would "parallel play" but not engage with any of his peers. 

I was in mourning for his future, then "I" kicked in. I've always been the girl scout of my group of girlfriends, I guess I'm organized. More like organized chaos, but hey, organized nonetheless. I was reminded that God did not give me a spirit of timidity or fear. I decided I'm going to educate myself and tackle this thing head on. I started to read on-line and was lead to a book called "Healing and Preventing Autism" by Jenny McCarthy & Jerry Kartzinel M.D. For me, it was a good place to start, a new book, with one place for me to start learning about what was happening in my son's world. 

I do not believe David was born with autism. I mean, look at this face, no lack of emotional connection or loss of eye contact here. I have a feeling that immunizations and our environment have triggered a response in his body that was genetically predisposed to neurological disorders. See, family history plays a part in all of this. I learned that my mothers bipolar disorder and alcoholism plus my Dad's diabetes played a role in my kids genetic deck of cards. Our families come from a pile of poor methylators- we can't detoxify our own bodies! If we can't get rid of the fillers and stabilizers that are in the shots we are given and they get into our blood and then our brain, there goes the eye contact and social/emotional skills needed to develop properly. 

By environment, I mean the paint I used to paint the nursery and scents/colors in soaps and additives in foods that we have given, it's not all "them", we played a part in this too. Now we are going to undo it.

This blog will share our journey thus far, I will share research I've found and links to stuff that I've tried or found interesting. This is a place for me to show what I have found, it may not work for you and I'm not getting paid to share any of the info I've found either. I have lots of questions and asking them will make me the best advocate I can be for my child. I hope this is a place for encouragement. I know I don't know everything, I do know God gave us David for a reason and we are so blessed to be his parents and learn what he has to teach us.