The Tough Days

If I told you that everyday in my journey with Sam is easy...I would be lying...however, everyday in my journey with Sam is precious...that I will always realize and forever be thankful for.

Sam has had a tough winter and by tough I mean 90+ days of illness, 2 bouts of pneumonia, auto immune reactions, immune reactions, sudden onset of GERD, mouth ulcers, severe weight loss, increase of OCD sensory issues along with daily smiles, giggle fits and some much needed sarcasm on my part to get us through.

Whew...and I thought the external fixator was going to be the toughest 4 months of my life...it was...this winter is running a close second...hmmm, maybe third after the time spent in the ICU when Sam stopped breathing and suffered his brain injury.  The really, really hard part is watching Sam go through so much and not really being sure if we are helping him or hurting him. I realize as a Mom and chief caretaker of Sam that it is my responsibility to watch, analyze, pick up on the small things, research, ask 8 million questions, drive his pediatrician crazy (God love that man), worry (wait not worry...pray instead), scream, cry and sometimes just hold him so close that I hope whatever is bothering him somehow transfers to me and I can deal with it, figure it out and make it go away. When Sam hurts, my heart hurts more and I will do everything in my power to make him feel better.

Our winter journey began at the end of our road trip to Montana when Sam caught the Enteriovirus 68 that swept across the country and claimed many innocent children's lives. After that virus he never got back to stable, it seemed like he had one virus after the next and when that wasn't enough he threw in some autoimmune reactions and then his body decided to try a different strategy and brought on GERD which led to a couple of pneumonias and a GERD medication that appears to be causing mouth ulcers that required narcotic pain medication but not before we had a full oral examination done under anesthesia so we could rule out a tooth problem. Yep...a whole load of crap and one little guy that still feels terrible, has lost 44 lbs. and just wants the same thing I do...stability. Not sick, not in pain, not unable to eat...just stable.

I decided to begin to wean Sam from the GERD medication to allow his mouth to heal, unfortunately his GERD symptoms decided to take on a life of their own and today was a very tough day which followed two sleepless nights of trying to deal with Sam's mouth pain issues and the hyperness that results from narcotic pain medication. Oh joy!

During my late night research I came across a couple of interesting facts about GERD, GERD medication depletes B12 which unfortunately Sam is already depleted on...so I decided to up his B12 injections.  GERD can be caused by too much or too little of stomach acid and GERD itself can cause mouth ulcers as well as the medication used to treat GERD.  Most nutritionists believe that GERD is caused by bacterial overgrowth.  I really liked this article on GERD written by a doctor with a strong viewpoint on nutrition versus medication. http://www.proteinpower.com/drmike/gerdacid-reflux/gerd-treatment-nutrition-vs-drugs-3/

So as I headed up to see Dr. Vu I had a couple of thoughts in mind.  I can treat bacterial issues with colloidal silver, I can up his B12 injections and I can try adding an organic Amish remedy for acid reflux as I wean Sam from the medication, but how do I get his body to stop over or under producing acid.  His diet is the anti inflammation diet and we have already further removed any potential foods that could cause reflux.

To say Sam was in a mood today...is an understatement of epic proportions.  Sam didn't want to see Dr. Vu or any doctor for that matter, Sam's mouth hurt and he was fixated on that and Sam was having congestion issues caused by his GERD symptoms which made him more uncomfortable and Sam was hungry and wanted to eat but his mouth ulcers made that difficult too. Sam fought both Dr. Vu and I through the entire muscle testing segment.  For those who don't know Dr. Vu he is 

Vu Nguyen, D.C. and has been working in the Fox Valley area since moving to Neenah, WI in 1998. He received his Doctorate of Chiropractic degree in 1996 from Palmer College of Chiropractic in Davenport, IA. Dr. Vu works to improve his patient's whole health with chiropractic adjustments, physical rehabilitation, nutritional counseling, lifestyle modifications, work modifications and prevention education.  He is a Certified Chiropractic Spinal Trauma practitioner and Certified in the Cox Flexion/Distraction technique for low back and radiating leg conditions caused by disc herniations. Dr. Vu will treat the neck with a specific adjustment called the N.U.C.C.A. technique that uses low force and low pressure that does not produce the "cracking" in the neck. Dr. Vu also performs treatments for allergy and sensitivity problems using muscle testing, NAET, Standard Process supplements and without the use of needles or medication. Dr. Vu works with his patient's as much as necessary not to just improve their pain, but improve all aspects of their lives.

 

In our world Dr. Vu helps Sam's body communicate what it needs or what it is struggling with when Sam is unable to.  He does this through muscle testing, and I know someone is saying "What the heck is muscle testing?" Muscle testing is something you have to experience to really comprehend and yes it is different than anything your traditional doctor will do but it has been unbelievably accurate and helpful in figuring things out for Sam.  Here is a video that describes the process:

 

 

Well if you are still with me, you are beginning to think outside the box.  Now lets take it one step further and add that when we test Sam, since he will not cooperate with this, Dr. Vu tests through me while I hold on to Sam.  Are you freaked out yet??  Sooo...instead of answering all the questions swirling through your mind about what appears to be an unreal way of reading the body I am going to instead tell you what Dr. Vu figured out with Sam today.

 

Before I do that I will tell you about a past experience.  When Sam had the external fixator on his hip we had issue after issue with pin problems, infection, granulation tissue and Sam's body appearing to fight this thing with all it's might.  We had tried antibiotics, manuka honey, different dressings and ointments to no avail, Sam continued to have black flesh, granulation, infection and then Dr. Vu treated Sam for a body/brain imbalance and an issue with Sam's body fighting it's own RNA and miraculously the last month of Sam's external fixator was uneventful and his pin sites looked the best they had during the entire four months.

 

Soooo today when Dr. Vu began to test he first checks to see if Sam's nervous system is functioning and his was blocked.  He then determines what is blocking it and it was Sam's digestive tract. As he tested further he determined that Sam needed enzymes but more importantly he needed some supplements to help his brain and nervous system to work with his digestive tract, basically his brain wasn't communicating properly with his digestive tract (my mind pictures his brain not getting the message through to produce or not produce stomach acid).

 

So, we added these supplements to his protocol:

 

Multizyme:   Multizyme contains digestive enzymes to support the proper breakdown of proteins, carbohydrates, and fats.

• Enzymes provide support in the gastric and intestinal phases of digestion
• Supplemental pancreatic enzymes support pancreatic function

Hypothalmex: 
Before detailing Standard Process Hypothalmex, people have to understand the importance of its impact on the hypothalamus gland. This gland keeps everything running in a smooth way, even while sleeping. Despite its size, this gland is very powerful and can be found beneath the thalamus on both sides of the third ventricle of the brain. In order to be able to keep up with bodily changes, the gland communicates with the other organs in real time. In fact, it actually coordinates blood pressure, electrolyte and fluid balance, body weight that should be kept within normal ranges, depending on the internal and external conditions, as well as body temperature.
In addition, hypothalamus secretes a variety of hormones which are able to control any gland contained by the endocrine system, thus receiving the cue from chemical signals which are sent throughout the organism. These hormones are then released in the bloodstream in proper times and amounts and later stimulate growth of adrenal gland while also promoting protein synthesis every bodily cell.

Chlorophyll:  Chlorophyll Complex supports multiple body systems.

• Provides antioxidant activity
• Supports vascular health
• Supports the body's normal immune system function
• Provides cardiovascular support
• Maintains skin and hair health*

Black Current Seed:  Black Currant Seed Oil contains the essential fatty acid gamma-linolenic acid.

• Encourages proper eicosanoid synthesis (central nervous system communication)
• Supports the body's normal tissue repair process
• Supports normal blood flow
• Supports healthy immune system function*

Cataplex AC:  Cataplex A-C helps support immune function and maintains healthy cells and tissues.

• Helps maintain healthy mucous membranes
• Supports a healthy immune response
• Provides ingredients with antioxidant activity
• Supports the hematopoietic system
• Helps maintain healthy epithelial and connective tissues
• Contains a combination of key ingredients from Cataplex A and Cataplex C along with Echinacea

Symplex M:  Symplex M supports the healthy function of the testes and the adrenal, pituitary, and thyroid glands.

• Provides uniquely derived nucleoprotein-mineral extracts that support cellular health
• Contains a combination of key ingredients from Orchic PMG, Drenatrophin PMG, Pituitrophin PMG, and Thytrophin PMG*

RNA:  Ribonucleic Acid (RNA), derived from yeast, supports cell replication, growth, and protein synthesis.

• Promotes healthy cellular growth and development
• Supports healthy cellular functioning*

Our goal is to wean Sam off the GERD medication, by using the Amish Reflux Remedy which includes organic apple cider vinegar, ginger and garlic, all things his body can digest without adverse reactions.  Use the supplements to kill the bacteria, support the immune system, improve the central nervous system communication, boost the brain and hypothalmex function, regulate the thyroid and pituitary and help promote healthy cellular function.  Use colloidal silver to further kill bacteria and keep the system clean.

We leave for Arizona in a week or so and I hope and pray, and pray and hope this all works and Sam gets to enjoy his vacation.

Our Journey With Diet and Supplements

Sam came into the world a whopping 10 lbs., 2 oz. and I originally took that as a sign that he was not going to be like the typical child with Down syndrome because from my reading most were born early and they were small. He was only a day early and that was because I was induced and he looked like a toddler when he was born. It should have been my first clue that Sam was not going to go by the book, Sam's journey was going to be his own and he didn't want me to get comfortable with anything written or pictured in a book. Now looking back, how could I have possibly thought that there was a typical child with Down syndrome?? They are all so very unique.

As I researched Down syndrome and tried to understand our new reality I quickly became side tracked as Sam decided to keep me focused on him. He had feeding issues, he seemed to struggle with breathing while he slept. His feet and hands were often so blue or purple that I would hide them in his pajamas so people wouldn't stare. Wow, it was fun finding these pictures again, but take a look at Sam's hands in our Christmas photo. They are perfectly purple. I have really cute kids...don't I??? Okay...so I'm a little biased.

Sam's first year was a rough one with numerous hospitalizations for illness and respiratory issues. He was on antibiotics so many times I lost count. It seemed so hard to keep Sam healthy and breathing correctly not to mention trying to get food in him. Sam loved to eat, but he had swallowing and breathing issues...those two bodily functions didn't seem to work together for him. We had to thicken any and all thin liquids to keep Sam from aspirating. I was awake more than I slept in that first year as I continually needed to monitor Sam's breathing and re-position him as needed to maintain a good airway. My first year I was overwhelmed by trying to understand if what we were experiencing was a result of Down syndrome or something else. This was my first experience with a medically involved child and I was trying to learn as fast as I could. I often got discouraged when I saw other children with Down syndrome who seemed to eat and breathe fine, who seemed to be progressing and meeting their developmental goals.

Our first big set back occurred on the day Sam was baptized. Sam was 1 month old and he seemed lethargic that day and it was more difficult than most to keep his airway stable. Looking back I now know I should have had a pulse ox and oxygen available in Sam's first year but no one seemed to know the extent of his breathing issues. Sam began to have some severe apnea issues where he would have to be physically startled to take a breath. During these times he would turn a bluish gray color and we rushed him to Children's Hospital. The doctor's seemed to be skeptical because Sam arrived awake and pink in color but they quickly took a look at his heart, considered reflux and did a chest x-ray. Sam was admitted for observation and it was when he fell asleep that the episodes returned but now he was hooked up to a monitor and I could see what was happening. Sam would drift asleep and suddenly all of his stats just dropped off and he did not return unless I physically startled him. I called the nurse in and it happened again and this time everyone came running. We were transferred to the ICU and a tube was put into Sam's nose to send a message to the brain that he needed to use this airway. Sam was originally a mouth breather but after many medical tests we found out that the combination of his tonsils and adnoids taking up 70% of his airway uninfected, his floppy airway and extra esophageal fold put him at a huge risk for apnea. It was at this time that we were given a very bleak picture that because of Sam's severe apnea issues that he most likely had suffered a brain injury from oxygen deprivation and his right side was showing a significant weakness. Here is Sam after he returned home.

We did notice that his right side did not move as much as the left and if he rolled over he often lost track of his right arm or leg and they could end up in strange positions. Sam did not belly crawl until he was 19 months old and he did not walk until he was 3 years old and these events only occurred through a lot of work and with the help of NACD. But even through the set backs it was this face and smile that kept me going.

Although Sam's life was filled with medical appointments and evaluations, Ben and Danielle just kept loving him and they were both very protective of him.

After his ICU experience we now had more cardiac appointments as they monitored Sam's ASD. We were scheduled for a swallow study but interestingly the sleep study didn't come about until he was 10 months old. It also is interesting to me that an apnea monitor and oxygen didn't come home with us. Hindsight is a wonderful thing but not much help when you are going through the experience. The swallow study diagnosed Sam with dysphagia or a late swallow. Sam failed the sleep study in spades. The ENT point blank told me that unless Sam had his tonsils and adenoids removed immediately he would become a pulmonary cripple. At 11 months Sam had his tonsils and adenoids removed and I was pleasantly surprised by how much better he and I could breathe and sleep. I know you are all loving the baby pictures, so here are a few more.

Sam at 3 months, already looking forward to his employment at J&H.

Sam at 4 months old, monkeying around.

Sam at 10 months old. Yep, he has always been adorable.

And his 2 favorite people in the world, brother Ben and Danielle.

We had a huge birthday celebration for Sam. I think I was thrilled that he and I made it through the first year.

The next photograph is one of my absolute favorites of Sam and Danielle together.

So, in all honestly, in Sam's first year I was not overly concerned with diet and supplements because I was focused on swallowing, eating and a little thing called breathing. We began with NACD when Sam was 18 months old and it was the first time I had heard about Nutrivene and Ellen Doman had requested that we remove dairy from Sam's diet. In all honesty...I thought Ellen was way off about dairy...I mean we live in Wisconsin...the dairy state?? But as I was soon to learn, she was usually spot on and I had some learning to do. We removed dairy and Sam's congestion went away. I thought congestion was just part of Sam, I couldn't remember when he wasn't congested. The change to raw goat milk, almond milk and rice milk was one of the easiest changes and because we saw an immediate result it was easy to stick to. I had so much to learn and my next dive was into the world of supplementation. I checked out Nutrivene and loved the testimonials. I thought this may be an answer to my prayers and I ordered the powder. At first Sam would happily take it in his applesauce but that ended after about 2 weeks. The other problem I had was that Sam seemed less focused, more stimmy and I hadn't even gotten up to the full dose yet. His skin looked worse with some added rashes and his temperment changed. I quickly figured out that my experience with Nutrivene was not going to make it in the positive testimonial section. I began to realize that once again Sam's journey was going to challenge me further. I still felt in my gut that Nutrivene was a good supplement and I still recommend it to parents that ask me about supplements.

After talking with a fellow NACD mom we switched Sam to Brain Link and Cod Liver Oil and his body seemed to like it. His focus improved and the stimming reduced down to his typical amount...Sam has never completely given up on stimming. It's a dream I have. When Sam was little his stimming was rocking, playing with images out of the corner of his eyes, getting too close to the TV screen and a little bit of flapping or finger play next to the eyes. The stims have changed over the years and he is always very creative with his stimming. He could start out with good play and turn it into a stim.

It was nice to see that in Sam's 2nd Christmas photo, his color was so much better and his hands were nice and pink.

When Sam went in for his 2nd year cardiac appointment we were disappointed to hear that his ASD had not closed on it's own and he would be scheduled for surgery on his 3rd birthday. I jumped into research mode again and found Willis Langford. Willis was a wealth of information and plunged me into the world of nutrition and supplementation. He was the first to talk with me about Leaky Gut. He answered my gazillion questions and tried to desperately teach me about the body's metabolic systems. It seemed very over whelming to me and I felt like I would need a bio-chemist to assist me. We began to give Sam Mannatech supplements. This was our only addition to his supplements and amazingly when Sam went into his 3 year cardiac appointment his ASD had closed and his surgery was cancelled. My mind began to wrap around the idea of helping Sam's body through supplementation.

I joined the Einstein list and I spent a lot of time reading through the archives. I'm not going to go into lengthy explanation on the metabolic cycles regarding Down syndrome because others have done it so much better than I could. Please see: Basic Cell Biology for Parents of Children with Down syndrome, Down syndrome is a Treatable Condition, and my all time favorite...A Hole in the Bucket. I began to piece together things I had heard from doctors, nutritionists, holistic doctors and other parents. Sam continued to have issues with respiratory illnesses, pneumonia and croup. I tried a lot of different supplements but they didn't seem to address these issues. I got excited when I read about a supplement that helped a child on the listserve but I was quickly discouraged when Sam would have the opposite result or even worse side effects. Sam also had skin reactions, behavior breakdown, temper tantrums and side effects to medications that were not expected. I often felt like I was fighting a losing battle.

NACD began to talk with me about changing Sam's diet. Leaky gut came up again and I jumped into my research mode again. So much of what I read pretty much described Sam. I began to wrap my mind around the fact that Sam's diet needed to be addressed. The nutritional supplements would be lost on a system that couldn't digest and use them. I added supplements to address yeast to our protocol (a probiotic, grapefruit seed extract, garlic & oregano oil) and I began to slowly break down Sam's diet. Something Ellen Doman said to me really helped. She told me about the SCD diet but she told me to think of Sam's diet in the terms of fruit, vegetables and meat...as organic and natural as possible. Shop on the edges of the store and skip everything processed in the middle. I remembered hearing that vegetables that grew close to the ground were the healthiest and should always be organic.

I would love to tell you that I jumped in head first and all our problems were resolved. Instead...I struggled...I listened to those around me that said that having something special or off diet once in a while can't hurt....birthday cake...ice cream...a McDonald's Happy Meal. I mean, shouldn't every child experience a Happy Meal once in their life? I thought that if I watched his diet most of the time...I was doing great. Well, I quickly learned that my lack of commitment to the diet wasn't helping Sam in any way. I was still feeding his yeast issues and with the yeast came lack of focus, increased stimming, temper tantrums, hissy fits, bad bowel movements and his bodies inability to absorb and process nutritional supplements or medication. We were still in a bad place and Sam's immune system was still suffering.

I would often jump back on the diet but I learned that dietary changes do not necessarily show immediate outcomes. If I followed the diet for six weeks the changes were often so gradual that having not done this numerous times I could have missed them. I had to begin to realize that this was not a diet but instead a life change. Sam needed me to jump in head first and keep swimming. If I was going to help him heal his gut and improve his immune system I had to be committed to changing his food choices. I needed to let go of the idea that Sam could eat whatever we ate and I needed to really pay attention to giving Sam's body what it needed. It is now easy for me to tell when Sam's system is off. He recently was hospitalized for double pneumonia and a secondary infection and was on 4 different IV antibiotics before they determined which one was best. Sam had an allergic reaction to one of them and minor reactions to the others but most notable was the change in his behavior. He was hyper, stimmy and the gluten free choices in the hospital had too much rice for his system. We needed to get back home and work with the food choices that I knew his system could handle. Being gluten free was not enough for Sam, his system didn't handle a lot of rice well, corn was out, sugar was out. He couldn't handle enzymes but he needed them. His yeast was resistant and one course of supplements wasn't going to do much.

I had figured out that Sam's system did well with fermented vegetables and we love Little Red Hen and Company products. He eats a scoop of these before each meal and this helps him digest his food better. Sam also has a scoop or two of coconut kefir made by Slow Pokes a local store in Grafton, Wisconsin. The kefir can be mixed into a liquid or Sam and I can both eat the flavored kefir straight. Another wonderful find was a bread that Sam could tolerate. Most gluten free breads are made with rice or tapioca starch which didn't seem to work well in Sam's system. Slow Poke's brings in a bread from Deland Bakery which is a vegetable (zucchini) bread with millet.

I didn't really know what to supplement anymore. I would hear about new protocols and give it a try but Sam would quickly show me that he couldn't handle the supplements. Putting Sam on gingko or body bio oil resulted in increased stimming, lack of focus and inattention the exact opposite of what it was promised to do. We tried the Speak supplement for speech with some great initial results but increased stimming and a drop in speech after being on it for a month. His pulmonologist was hoping for the magic pill for Sam that would keep him from going into respiratory distress but everything we tried Sam reacted poorly to. He would become manic on inhalers or steroids. He would break out in rashes from antibiotics. Sam's bottom has had a rash on it for the last 4 years and every time we tried to treat it we made it worse. I noticed other changes too...Sam's eyes are always dilated, his pupils do not seem to react to light appropriately. So think about trying to read when you have been at the eye doctor and they have dilated your eyes. Hmmm....that could be a problem. We also have the added diagnosis of Perthes which in Sam's case is a late stage and has continued to break down his hip even after corrective surgery. So even with the advances and positive things we have seen with his food choices we still were not giving his body what it needed to function properly.

I wanted someone to test Sam and help me figure out what to supplement. I wanted to know why Sam couldn't take supplements that should help him. I wanted to move forward instead of feeling like we are always falling behind or waiting for the next diagnosis to hit. Although this journey with Sam has taken me to more doctors and specialists than I ever hoped to meet in my life I was willing to try one more. In my research on Perthes or AVN I had read about some patients seeing good results with oxygen chamber therapy. Considering Sam had issues with maintaining a healthy oxygen level this naturally caught my attention. A friend of mine told me about a local doctor that worked with a lot of children with Autism. What interested me was the fact that this doctor did extensive metabolic testing, understood the results, understood metabolic systems and disturbances and I hoped that maybe he could help me with Sam. He also knew and used hyperbaric oxygen therapy treatment with his patients.

I met with Dr. Norman Schwartz and he asked me what my concerns were about Sam. I explained everything I have covered here and showed him each of the supplements I was giving Sam and explained some of the ones I wish I could. He asked me to complete an extensive round of blood tests, urine tests and a stool sample. After we did we set up an appointment to review the test results. I was pleasantly surprised that Sam's pediatrician Dr. Dirk Steinert also wanted to attend this appointment. Although I am no longer a fan of collecting labels or diagnosis for Sam I was happy to see that someone could finally show that Sam did indeed have an autoimmune issue. All of Sam's Ig numbers were low with his IgA and Igm being the lowest. In my research it showed me the possibilities of celiac, respiratory/immune issues...pretty much describing some of Sam's issues. Sam also showed an abnormal thyroid range. Hyper instead of hypo.

The urine test used to complete the Organic Acids Test-Nutritional and Metabolic Profile gave us some more information. Sam has a high yeast or fungal overgrowth (see I told you Ellen is normally spot on). His low HVA levels indicate a lower production of the neurotransmitter dopamine which may be due to a deficiency in magnesium and B6. Low dopamine levels lead to loss of motor control, cravings, poor attention and focus, low drive or energy, cold hands and feet, putting weight on too easily, craving diet soda. Hmmm....pretty much describes Sam. Sam had low VMA levels which can manifest itself with sleep issues and fatigue and are also helped with magnesium and B6. Sam also had a low HIAA level which indicates lower production of serotonin. Low serotonin levels are often attributed to anxiety, panic attacks, obesity, insomnia and fibromyalgia.

One of the areas that kinda startled me was the high level of quinolinic acid in Sam's brain. The range for the Quinolinic test is .48-8.8, Sam's was at 9.1. The range for the Quinolinic/5-HIAA Ratio is less than 2.5 and Sam's level was 12. This high level may be a sign of inflammation or neural excitotoxicity. Quinolinic acid is derived from the amino acid tryptophan and is neurotoxic at high levels. As an excitotoxic stimulant of certain brain cells that hve NMDA-type receptors, high quinolinic acid may cause nerve cell death with continuous stimulation. Brain toxicity due to quinolinic acid has been implicated in Alzheimer's disease, autism, Huntington's disease, stroke, dementia of old age, depression, HIV-associated dementia, and schizophrenia. High levels of quinolinic acid may inhibit heart contractions, cause lipid peroxidation in the brain, and increase apoptosis (programmed cell death) of astrocytes in the human brain. The level of quinolinic acid is also highly correlated with the degree of arthritis impairment. (Yikes, that won't help the Perthes issue)

Treatment of excessive levels can be achieved by multiple approaches: reducing tryptophan supplements, preventing repeated infections and immune over stimulation, reducing the number of vaccines given at one time or increasing interval between vaccinations. (Already doing that) In addition, the drug deprenyl or the dietary supplements carnitine, melatonin, capsaicin, turmeric (curcumin) and garlic may reduce brain damage caused by quinolinic acid. Supplementation with 5-HTP may increase serotonin levels, but 5-HTP is not metabolized to quinolinic acid.

Sam had high ethylmalonic, methylsuccininc, adipic, suberic, or sebacic acids may be due to fatty acid oxidation disorders, carnitine deficiency, fasting, or to increased intake of the medium-chain triglycerides found in coconut oil, MCT oil and some infant formulas. The fatty acid oxidation defects are associated with hypoglycemia, apnea episodes, lethargy, and coma. Regardless of cause, supplementation with L-carnitine or acetyl-L-carnitine (500-100 mg per day) may be beneficial.

Sam's pyridoxic acid (B6) levels were low which may be associated with less than optimum health conditions (low intake, malabsorption, or dysbiosis). Sam's B5 and C level was also low.

In the Doctor's Data urine tests we learned that Sam's calcium was low and needs to be supplemented (Hmmm...could be very important for bone growth, don't you think). Sam's molybdenum was also low which can be linked to an increased allergic reaction to sulfite food additives.

In the Doctor's Data metal toxicity test Sam showed a high level of Barium.

Sam's stool sample show a low predominance of bacteria which is an indication of dysbiosis or the term that originally described Sam, leaky gut.

It felt good to finally put all the pieces together and come up with a plan. So what is Sam's plan???

PH Diet - We will try to daily test his first urination of the morning and check his PH level. Sam has slowly been working his way to the 6.4 - 6.6 range but we will continue to work on getting him to 7.0. Why the need to check his PH. Here are 5 reasons to do so from the Alkaline Diet website. You can also get a simple chart to see alkaline/acid foods.

Improved Energy Levels

Proper cell functioning is very important to a person’s overall energy level. If the cells are not healthy, they are not as effective at holding and transferring oxygen within the body. This can result in overall fatigue and a lack of energy. The body’s pH level can also affect a cell’s ability to produce adenosine triphosphate (ATP), which is important to the body’s energy level. This process normally takes place within a cell’s mitochondria. If the body’s pH level is too acidic, this process does not take place as effectively.

Healthier Teeth and Gums

When the pH level of the body is too acidic, it stands to reason that the mouth will also be quite acidic. Unfortunately, when the level of acid in the mouth is too high, it can cause bacteria to grow at a much faster rate. Bacteria can cause a number of different problems in the mouth, such as gum disease and bad breath. A high level of acid and bacteria in the mouth will also increase a person’s chances for tooth decay. Many people note an improvement in their overall level of oral health after switching to a diet program that promotes an alkaline pH level in the body.

Improved Immune Function

When cells are healthy, they are effectively able to absorb the nutrients they require. Healthy cells are also efficient at eliminating waste products. If cells become weakened in any way, they are not nearly as effective at these kinds of functions. As a result, infectious organisms have a better chance of affecting these cells. When the body’s pH is too acidic, cells cannot function at their optimal level. This is why a person is more likely to become ill, develop infections, or even develop cancer when their diet is acidic as compared to alkaline.

Reduced Pain and Inflammation

Magnesium is one of the minerals the body uses to help control excessive acidity. If you eat a diet that has an acidic effect, the body is forced to use more magnesium to help neutralize it. However, magnesium is also a useful nutrient in the body that helps to support joint and tissue functions. By eating a diet that has an alkaline effect on the body instead of an acidic effect, your body will have more magnesium available to help reduce tissue and joint pain and inflammation.

Slower Aging

When cells are subjected to an acidic environment, they function much less efficiently. This reduction in functionality can impair a cell’s ability to repair itself, thus resulting in premature aging. Premature aging can also occur when cells are not able to get enough oxygen, and when they are not able to rid themselves of toxins. An alkaline diet can help prevent all of these scenarios. Better functioning cells means a younger appearance for you. Plus, as an added benefit, an alkaline diet program will also help you maintain a healthy weight.

All good stuff and what are we doing for supplements:

B12-Sam receives a shot every third day of 12 units (and no he does not like these)

Nutrivene D-Sam is now able to take the full dose of 15 capsules a day divided in two doses.

Curcumin-4,000 mg

B6-275 mg

Vitamin D3-5,000 IU

Vitamin C-1,000 mg

Megasorb CoQ10-100 mg

Probiotic 55 billion-476 mg

Butter Oil Fermented Cod Liver Oil-1500 mg

5-htp-200 mg

Magnesium-440 mg

Zinc-75 mg

Calcium-300 mg

Garlic, Oregano Oil and grapefruit seed extract for yeast

Colostrum-480 mg

That's a total of 43 capsules a day, 5 drops and orange juice enhanced with a liquid calcium supplement along with a shot in the butt every third night. Sam with encouragement will swallow all the capsules with apple sauce to help them slide down.

I keep track of Sam's PH and all his supplements on the Ipad with a app called Ibiomed which allows me to create Sam's profile, list his allergies, supplements, therapies and journal any issues, concerns or improvements.

So what have we seen since we started. Well we slowly ramped up to the full protocol. Dr. Schwartz did warn me that we would see some yeast die out and behavior issues at the beginning but they would mellow with time and they have. In the first week or so Sam was hyper, stimmy, demanding and a wee bit overbearing but we kept on. Just Sam being able to take the full dose of Nutrivene without side effects was an improvement. Sam's eyes are now working correctly, they dilate and shrink to the light in the room. The rash on Sam's bottom is finally going away. Sam is sleeping well. He is pulling out more words and doesn't seem to struggle as much when asked a question. We still have to work on listening but he is easier to work with. He has good focus, he still says "no" when asked anything but he doesn't perseverate on it.

He is losing weight, hallelujah!!! He started at 128 lbs. and is now weighing in at 123. He is walking more and has less behavior due to reduced pain issues. Does he have any bone growth in the hip??? We will check that out at his next x-ray in a couple of weeks.

But overall...we are making progress. He seems happier and more in tune with his world. For his birthday and Christmas Sam received KidKraft sets. One is a fire station, another is a construction site and the third is a garage.

Previously we would have had to show Sam how to play with these or he would have had little to no interest. I like the KidKraft sets because they are well built, encourage imaginative play, work on communication skills and utilize fine motor skills to crank up the elevator, or hook on the wrecking ball. What I wasn't prepared for was Sam's appropriate reaction and play. He had the fireman sliding down the pole, going to bed, climbing the ladder and steps and he even had them talking to each other. To most parents that would seem really normal and what he should be doing but they haven't seem Sam do the same thing like drop the guy from the top floor 32 times in a row. Sam is curious about the sets and what you can all do with them. He watches me and then copies me...please keep in mind we used to have to do hand over hand to make this happen. So many things that other parents take for granted just did not happen with Sam...but now they are.

Sam has an interest in coloring and writing letters and words. Sam always liked the TV Teacher.com DVD's but he didn't transfer what he was learning to other areas. The other day he wrote Sam and Dad with his finger on the carpet. Yes, the S was backward but the effort and initiative is what excited me.

Sam decorated the tree I drew. So right now...it's fun...and exciting...and I hope and pray it continues.

We will recheck Sam's blood work in January and tweak as necessary. I am often asked if all this is necessary?? If Sam was healthy and functioning at a good level...I might not have jumped into as much although I would still want to address the extra chromosome and how it causes "overexpression" of genes that change metabolism and function of antioxidants, amino acids, digestive enzymes and other essential nutrients in his body. But Sam was struggling to stay healthy and out of the hospital, his hip was breaking down, his happiness and behavior showed signs of stress, pain and struggle. There was so much about Sam that I was piecing together but I didn't know how to address it. Through the combination of Dr. Steinert and Dr. Schwartz I think we are making progress.

Now I know a question that will come up is cost. Yep, Sam is a kinda expensive kid...although he is worth it. The extensive blood work was run through our insurance by Dr. Steinert. The urine and stool samples and two appointments with Dr. Schwartz brought us up to $1,204.00. I will submit this to our insurance and whatever they don't pick up I will use our HRA account to reimburse. On average a container of each supplement listed would come to a total cost of around $285.00 - $300.00 which would last a little over a month. So a yearly cost of over $3,000.00 in supplements. Add in Sam's NACD program, his organic grocery costs and the dollars begin to add up quickly. We are fortunate that some of our supplements can be put through our Family Support and Waiver programs. We are fortunate to have good insurance and a HRA account. We are fortunate that I can be home with Sam to do his program and keep him on his healthy plan. We are fortunate for so many reasons and Sam continues to make sure I don't take anything for granted.

I went through the holidays feeling empowered that we were doing something. Only time will tell what we will continue to see. I am encouraged but still tentative because I am used to seeing changes and then have them go away or see new side effects that are not expected or wanted. I want Sam to regain full mobility, I want him to ride his bike and enjoy his life. I want him to be healthy and happy.

My intention of this post is to simply share our journey....the positives, the negatives, the struggles and the gains.

When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left, and could say, 'I used everything you gave me'.
Erma Bombeck

It's Good To Be Home...I think!!!

Now don't get me wrong...I love coming home. But when dealing with Sam there are times when it is comforting being in the hospital. Let me try to make sense of things.

At the hospital I know Sam has access to anything medically we may need...oxygen, pep treatments, medications, IV's, medical equipment, pulmonary experts, way too many lab people (sorry lab techs but it's like being a human pin cushion), doctors, nurses and so on.

And even though I know all that is available I still never rest easy in a hospital. It could be the control freak in me coming out...one of my many faults. I have had good experiences and not so good experiences in the hospital with Sam...but to me each one was another learning opportunity, another piece of the puzzle which is my Sam.

Back in 2005 we had a bad experience which landed us in the ICU. Sam was misdiagnosed with asthma and an aggressive asthma protocol was followed. Sam reacted poorly and his condition got worse instead of better. We spent a couple of days in the ICU. Now even though that was a bad experience I learned how Sam adversely reacts to Albuterol and steroids. We learned that less is more for Sam and a slow and steady path is our best route of treatment. We pursued further testing to find out what Sam's specific respiratory issue was. There was good that came from a very bad experience.

Also from that experience I took on a much more active role in Sam's medical issues. I no longer have that unconditional trust of doctor's or medical personnel. I learned that doctors are truly practicing medicine and as they practice they also make mistakes. I began to view doctors and nurses as people just like you and me but with more medical knowledge...however I'm the expert on Sam. That doesn't mean that I am going to tell a doctor or nurse how to do their job but I will advocate for Sam, I will let them know what works and what doesn't, I will read Sam's non-verbal cues and let them know how he is doing. I will try to put myself in Sam's shoes and do the best I can in addressing what his concerns and needs might be. I will ask for pulmonary, orthopedic or any other specialty consult if I don't completely agree with a doctor's orders. I will probe, I will question, I will research, I will learn and understand the medical terminology, I will get second and third opinions.

With all that said I absolutely respect the role doctors and nurses play in Sam's life. I am the first to thank or acknowledge a doctor or medical professional that has met or exceeded my expectations. I want to build strong relationships with Sam's doctors and nurses. I respect them as professionals and people and I simply ask that they respect me as Sam's mom and the person that spends the most time working with and loving him.

My unrest in the hospital comes from the necessary shift changes in personnel. While I understand that nurses and doctors can only work so many hours a day it still becomes a little unnerving when I have to meet, introduce and educate so many people on Sam. I love when I get a repeat nurse or nurses return from one shift to the next...it comforts me to get to know those people who are helping me with my child. I can't imagine how difficult their jobs are as they meet new parents and children on each and every shift. Every child, every parent, every situation is different. I utilize Sam's pediatrician as my overall medical expert on all that is Sam. If I have difficulty in the hospital, Sam's pediatrician is my go to person to help coordinate a successful outcome. I do understand that some medical personnel like to talk to other medical personnel when it comes to making decisions about my child so Sam's doctor becomes that contact in those situations. I also understand that there are policies and procedures that have to be followed in a hospital situation and I ask Sam's pediatrician to listen to my wants or concerns and coordinate with the hospital. I carry with me a signed Emergency Information Form For Children With Special Needs (a blank copy can be found here, www.aap.org/advocacy/eif.doc) and a copy of Sam's respiratory report. I don't want anyone guessing about things we have already figured out with Sam. I understand and respect the fact that Sam's hospital file is thick and a doctor does not have the time to review everything so the medical information sheet and respiratory report gives them the important information up front.

Another area of unrest for me is the grey area of care and responsibility in the hospital. Ultimately I believe that as Sam's parent he is my responsibility 100% of the time...but hospital situations cloud this area. Yes I understand how to best work with Sam in certain situations but that does not usually include taking blood, putting in an IV or making him cooperate during medical procedures...I don't have to do those things at home with him. If Sam is coming to the hospital because of an illness I have often been awake and dealing with him for days before...so there is a fatigue factor on my part. Now add to this the changing personnel and things get cloudy for me. As I walk through the hospital I can't help but notice how many children/infants/toddlers are there by themselves. I feel sorry for these children...I try to rationalize that the parents may have to work or something critical is keeping them away from being there with their child...but my heart still hurts for these children. I also realize that if a parent isn't in the room the nurses are responsible for 100% of that child's care. But with me being in the room, what % are they expecting me to do? Does that % qualify me as a good/bad parent in their minds. I have watched Sam pull his leads off and throw them on the floor. The medical equipment is quickly registering that Sam no longer has a heart beat nor is he breathing. Alarms sound but I don't see anyone rushing in to check on him and I have even had times when the staff has just called in on the speaker to ask if everything is okay. I've wondered...is this the same policy followed if a parent is not in the room? What if something happened to me? What if I left without telling my son's nurse I was leaving? How long would it take for a person to check on Sam's situation? This is one of many reasons why I stay with Sam. Add in Sam's sensory issues, limited verbal expression, hearing issues, allergy and medication issues and we could have a potential prescription for disaster. But I struggle with the percentage of care. I actually am happy being 100% involved with Sam's care but when I am dealing with lack of sleep issues that commitment becomes a challenge. I try to let the nursing staff know where I'm at but I often get a mixed reaction. Some seem to understand and help as much as they can while others seem to not care and have no problem waking me to assist my help with Sam. And then there is that question of if I don't assist are they questioning my commitment to my child and honestly thoughts like this can become much larger in a sleep deprived mind. I also wish I could just sleep when Sam sleeps but my mind doesn't shut down in the middle of a respiratory distress situation. I am still monitoring the beeping, how he looks or acts and that keeps me focused on his situation instead of sleep. Now let's add in the plastic, hard recliner with the added comfort of the crispy, plastic, sweaty pillows and it isn't exactly a prescription for restful sleep. Oh but wait, I could also stretch out on the hard, plastic, too short for the average person pull out couch that never seems to pull out flat. I think I would pay an upcharge for a down comforter to go on either of these items to make them just a wee bit more comfortable.

I also want to take a minute and talk about the nurse call button. You press the button, wait for someone to ask you what you need and then wait for a nurse to appear when she is available. I often wish there was a general call button and a 911 emergency button. A general call button is great for an IV pump that is beeping, I need a blanket or towels, can I schedule a pulmonary consult...a 911 emergency button is for Sam is choking, gasping and about to pass out, Sam has pulled out his IV and I need help now and Sam's oxygen stat is dropping fast. Each of these happened and response time was not exactly quick enough for my liking. I handled getting Sam back in bed and comfortable without nurse assistance, I had to wait for assistance with the IV which led to an IV intervention (as I like to call it) 5 people for 1 child's IV. It's like they sent the best of the best with special vein lights, well versed in working with a child with special needs, quickest IV placement ever and I wanted to say, why doesn't this happen every time...can I request this dream IV team??? I handled the low oxygen stat by turning up Sam's oxygen myself until he was at a favorable level and then letting the nurse know. I hook and unhook Sam from machines, turn them on and off to go to the bathroom or help him take a shower, I often times administer medication or a breathing treatment if the person is tentative or unsure of how to proceed with Sam. Maybe it's just me and my control issues but I think many people who have not experienced hospital stays with their children are under the misunderstanding that while your child is in the hospital the nurses and doctors do 100% of everything and you can just rest and observe. Hmmm...nice dream but certainly not my reality.

While Sam was in the hospital he received 4 different types of antibiotics as they tried to determine the other virus Sam was fighting and if his pneumonia was bacterial or viral. As a knowledgeable parent I know probiotics should be given when antibiotics are given. Hmmm...why wasn't that a suggestion at the hospital? One caused an itchy skin rash to appear on his thighs. So benadryl was administered to help with that allergic reaction. So, Sam was taking 4 different antibiotics, two types of breathing treatments and now benadryl. I'm convinced that Sam's immune system issues stem from his unhealthy gut which was destroyed by IV antibiotics in his first year of life. I can't help but wonder what further damage we have now done.

I watch all this closely because I know that Sam can sometimes get overloaded or his body will reach a point where the medications begin to become the problem and he turns a corner in the wrong direction. On Tuesday Sam began to react negatively to the pep/respiratory treatment...he sounded and felt better before than after they were administered. He wheezed after receiving the treatment and his hyperactivity or OCD type behavior was rapidly increasing. That's my cue to intervene, ask for a doctor consult which normally leads to a pulmonary consult and then we change the protocol. But that doesn't mean it's a good time to take a nap because in 15 minutes respiratory shows up ready to do a pep treatment with both of the medications. You see the orders had not come through yet to drop the pep treatment and one of the medicines and use the other medicine as a regular breathing treatment.

Now do you understand my concern for those children here at the hospital with no one to advocate for them. No one watching for changes or medication reactions.

But let's talk about going home. Some of the hospital staff were not comfortable with Sam leaving due to his oxygen levels and the sound of his lungs. But when you have a more involved child you learn to take them home earlier and how to deal with the issues. I don't ever want to jeopardize Sam's health but you have to think about that in different ways. Sam was feeling better which means he becomes more difficult to handle in a hospital situation. Sam wants to get up and move, his sensory issues kick in as he feels better, the medications make him hyper and he demonstrates stronger obsessive behaviors....like getting the IV removed, removing the pulse ox, taking off his hospital bands, pushing or yelling at medical personnel to leave him alone. Sam also is immune compromised, the longer he stays in the hospital the more potential illnesses he is exposed to. Sam in known to double up illnesses as he did this time with pneumonia and another virus. I knew we needed to think about going home when I did try to take a nap and Sam proceeded to remove his hospital bands and his pulse ox and then woke me to let me know what he had done. I attempted to sneak out and get some food while Sam was sleeping. As I came back up to the ward, the nurses were chuckling and told me Sam was feeling better. As I approached his room I noticed the pulse ox strip laying outside the door that Sam had obviously removed and thrown there. I heard him calling "Mom, Mom, Mom...Sue...come here now". When I got into the room he was happy to show me his bare toe that was now free of the pulse ox. He had also rung for the nurse to let her know he removed it. Sam was beginning to feel more like Sam and it was time to go home.

At home I have things for Sam to do in bed, games to play, favorite movies and shows, music and toys. And yes they have toys in the hospital but it takes me 15-20 minutes to clean and sterilize each one so that my child with immune system issues can play with it and I still worry if I got all the germs off. At home I can get him moving his arms and upper body to help with his breathing by playing basketball, balloon tennis or using the Wii. Sam has more food options at home since his diet is limited by being gluten and dairy free and although the hospital has a nice offering it does not include all of Sam's favorites. Sam is happier and more cooperative in his home environment. At home he has his family that can tag team his care and meet his needs letting mom get some much needed rest.

Sam was thrilled to be going home, he did great as we wheeled him through the hospital but when we hit the outside cold air and he had to be loaded into the car the coughing began. As I drove it accelerated to some gasping at times. So now I'm driving when I have not slept much in days and I have a child exhibiting respiratory distress symptoms in my back seat. I struggle with the decision to turn around and return to the hospital or continue home. As I get to the north side of Milwaukee he suddenly becomes very quiet. I quickly pull over and not wanting to introduce more cold air I crawl over the seat to check his breathing, take his pulse, look at his nail beds and make sure he is not pulling in around his rib cage. Sam has coughed himself to sleep. I pray some more and continue my drive home. Getting Sam into the house causes another coughing jag but now I have the nebulizer and can quickly administer a breathing treatment. Sam does well but struggles to get the coughing under control. I put on his oils to assist with his breathing, start up the vaporizer and oil diffuser and pray these are going to calm his coughing down. They do and he seems more comfortable but when it is time to sleep he starts up again. I reapply the oils, adjust the vaporizer and begin to pray. I crawl into bed...after 4 days of little sleep I feel like I'm crawling into a cloud. My bed has never felt so good. I explain to Jeff how tired I am and that I almost feel like I'm losing my sanity...but Sam continues to cough. Jeff begins to pray and I begin to plead with God for help and comfort allowing Sam and I to get some much needed sleep. God answers and Sam begins to settle down and falls asleep. Jeff is now feeling all the emotions and worry that comes with taking care of Sam as I begin to drift off to sleep. He knows that I need sleep and yet he's terrified on what the evening may hold. We are both thrilled that Sam continues to sleep well with an occasional cough here and there. Jeff and I take turns getting up and checking on him in the room attached to ours.

The next morning Sam wakes up coughing and gasping again. Mornings are always tough on respiratory kids. Everything settles, your respiratory systems gets dry and inflamed and you work twice as hard to work through everything. I immediately give Sam a breathing treatment and I see him relax. I talk him through slowing his breathing down and he begins to respond. I offer him some ice cold water and when he asks for ice cream I don't hesitate. Sometimes ice cream can do wonders to cool, comfort and alleviate the inflammation in Sam's airway.

Sam looks good but has some dark circles which I call his pediatrician about. The pulse ox is ordered and on the way. I will continue to monitor Sam's oxygen stats. Sam is happy, smiling, and tells me over and over "It's good to be home". I know we are not out of the woods yet. Sam's mobility is further decreased with his pneumonia and he will have to take it easy and we will take it one day at a time. Sam had a good day at home and he went to bed easily and with little coughing. I feel better about being home. I am still exhausted today but I know that I will regain my energy as I get to sleep on a more regular basis and right now that pillow,....er bed, is calling my name. Good night everyone!

Thinking, Praying, Researching!!!

"The inner mechanations of my mind are an enigma." Patrick Star from SpongeBob.

Yep that's right I am quoting an animated cartoon character for my blog today. But honestly this quote works for both Sam and I at this point. I have always said I would pay any amount of money to spend just a 1/2 hour in Sam's brain. Thinking how he thinks, feeling how he feels, listening how he listens, speaking how he speaks... Just think of the valuable information that 1/2 hour would give me.

I could finally understand Sam's hearing issues, Sam's processing issues, Sam's speech issues but most of all I could understand Sam's pain issues. We are in a tough spot. Sam's CT showed further lucency and fragmentation of the bone. It showed fluid on the hip which could be a sign of infection but more likely is an indication that Sam's AVN (Avascular Necrosis of the hip) known as Perthes in children is advancing. The exact opposite of what we want to happen. Sam's surgery included a left proximal femoral varus derotation osteotomy and a pembersal pelvic osteotomy. Okay now for regular people terminology, they removed a pie shaped piece from Sam's femur, tilted the bone into the socket for better coverage, held the bone in place with hardware in hopes that this would keep the hip in the socket and re-position the head of the femur to stop the Perthes from breaking down the bone any further. Once this occurred the body would be able to re-establish the blood supply and regrow the bone. They also rebuilt the shelf of the hip to provide a better socket for the bone to regrow in.

Well, it appears the surgery was successful in taking care of Sam's hip dysplasia issue but Perthes continues to destroy his hip. Now that we know that Sam is still in the breakdown phase we can better understand the pain he is going through. Sam is asking for his wheelchair more, he is walking less, prefers to lay down and yet....Sam is still happy. Last night Sam asked to take a bath...something he hasn't done in years because he prefers showers. But I'm thinking that he was hoping the bath tub would be like the hot tub he sat in on vacation and at the YMCA. This morning when Sam woke up he asked to go see the doctor. Maybe he was just dreaming about doctors because we have had so many appointments in the last couple of weeks or maybe it's his way of letting me know that his hip hurts and yet...Sam is working with me this morning on his academics, his home program and as I write this he is watching a video on the Human Body. I wish Sam could tell me how his hip is. I wish he could let me know what to do to help him feel better. It breaks my heart to know my child is hurting and yet...I have only to look at Sam...how he smiles, how he laughs despite the pain, how he continues on and I know I need to do the same thing.

The test results are coming in and our next doctor appointment is on the 22nd to discuss all the results. I have already seen areas that have raised red flags in my mind...and this is when I fit Patrick Star's quote. If you had any idea the number of directions, the hours of research, the amount of time spent trying to put the pieces together on how AVN, Perthes, Sam's immune system and how each of these is affected by his metabolic issues...you now understand my enigma.

And yet...I put much of the worry in God's hands, I ask for guidance/direction and I am always amazed at how I can buzz around the internet grabbing at this piece of information and that piece until it all starts to come together. I am amazed at how my doctor's are working together, I am amazed at the blessings that continue to pour in...and I am thankful.

I believe our lives are what we make of them and everything in them is what we choose to believe, act and do. Apply that principle to everything in your life...it works. I am fortunate to have Sam as my guide. I have a guide that has humbled me, presented me with my faults and helped me view my life through his eyes. There are simple lessons we learn from our children with special needs and really any of our children.

I strive to learn these lessons.

Sam is always happy to see me. Sam hugs me if he thinks I need it or not. Sam smiles and laughs each and every day (unless of course he is under sedation or on massive pain medications). Sam loves the day to day motion of our lives...he wants to know where each of us is and when we will be coming back together. Sam instructs people to hug or dance together even if it makes those people uncomfortable. Sam says "Hi" to everyone and doesn't get upset when they don't respond. Sam hugs his doctors and nurses...despite of any pain or discomfort caused. Sam doesn't hold a grudge, he doesn't judge, he doesn't want what others have nor does he worry about not being able to do what others do. Sam is happy and content with his life.

The next couple of weeks will hopefully yield some much needed answers and a new path. I am hoping that by Thanksgiving we have even more reasons to be thankful. But I know my guide will make sure I see the blessings in family, support, friends, great food and strong relationships...especially the great food (I mean we are talking about Sam here).

Have a great Friday and an amazing weekend. Sam and I will too!!!

Medical Update on Sam Mayer!

I'm convinced that Sam just doesn't want me to get bored or possibly God is testing me or it's a combination of the two. Sam has had an increase in hip pain and is walking less instead of more. We headed back in to see his orthopedic surgeon and the x-ray unfortunately showed that we still don't have any bone regrowth in his left hip...so basically Sam still does not have a functional hip on the left side. Along with that concern is the chance that Sam has increased inflammation in the hip. It was suggested that we give Sam Tylenol and see if that calms the possible inflammation. So we gave him Tylenol but he continues to walk less and have a worse limp. Sooooo....we are headed in on Wednesday for a CT scan of the hip.

We are also considering a trip to Baltimore to have a one on one consult with Dr. Shawn C. Standard, a Perthes Specialist. I just want to make sure we are doing everything we can to give Sam a chance at having a functional hip, less pain and more mobility. Honestly...I just wish someone could fix it.

At the same time, Sam recently had blood work that showed his Vitamin D level was again well below the average. He has had two illnesses coming into the fall season which again raises my concerns about his compromised immune system. I have wanted to find someone that could do extensive testing and could figure out what is happening with Sam metabolically. Sam has so much going on that my gut keeps telling me that we have to figure out what Sam is over expressing, what he is lacking, how much yeast is he dealing with, what heavy metals does he have in his system, what are his amino acids looking like and what is the overall status of his gut and digestive tract. Yep, these are the kind of things that keep me awake at night.

Through a friend I was told about Dr. Norman Schwartz who is conveniently located in Mequon, Wisconsin. I am hoping and praying that Dr. Schwartz is the one who will be able to connect the dots and give us a better idea of how to help Sam biomedically. I believe that if Sam's body functions better, some of the issues that plague him like his compromised immune system, metabolism issues, vitamin/mineral deficiencies and overall function could be substantially improved. Your body working and functioning appropriately allows you to feel and function at a higher level overall. I'm not interested in applying patches or bandaids...I want to fix it. But Sam has always been a complicated puzzle. What is working for other children with Down syndrome doesn't seem to work for Sam. Like his NACD program, I need an individualized approach. Someone to look at just Sam and figure out not necessarily what is typical in the Down syndrome population but what is happening with just Sam. So I am in the process of getting labwork, urine samples and stool samples. Gosh, more experiences I never really wanted to understand...but Sam and God must feel I need to brush up on my biology. The picture is of the home test kits I need to complete in the next couple of days. I guess I should feel encouraged that Sam has already trained me on the use of urinals and bedpans...that training will come in handy.

I emailed Sam's pediatrician regarding the labwork that needed to be done. I know I have read on many blogs about doctor's that are not open to such thorough testing and think it is a waste of time and money. I agree with them if you don't have someone who can put the pieces together, analyze the data, make recommendations and then retest to see if the expected changes are happening. I have always held Sam's pediatrician, Dr. Dirk Steinert in high regard, he listens, he's open to discussion, he's willing to think outside the box but even I was surprised when he said "Yes, he could do the labs and he would like to come to Sam's next doctor appointment with Dr. Schwartz." I've never had a doctor offer to come to another doctor's appointment for Sam. I was equally thrilled when Dr. Schwartz said he would be delighted to have Dr. Steinert at the next appointment. I love when everyone begins to work together...I just hope this is contagious.

Now it's time for some heavy duty medical stuff. I'm not going to say I have all this right, because I hope to learn more but this should give you the gist of things. The explanations are from various websites. Sam's blood work will consist of:

peroxidase thyroid-Thyroid peroxidase test is a test that measures the level of an antibody that is directed against thyroid peroxidase (TPO).

Autoantibodies to thyroid peroxidase (TPOAb) are produced within the body. The presence of TPOAb in the blood reflects a prior attack on the thyroid tissue by the body's immune system.

CMP-The Comprehensive Metabolic Panel (CMP) is a frequently ordered panel of tests that gives your doctor important information about the current status of your kidneys, liver, and electrolyte and acid/base balance as well as of your blood sugar and blood proteins. Abnormal results, and especially combinations of abnormal results, can indicate a problem that needs to be addressed. The CMP is typically a group of 14 specific tests that have been approved, named, and assigned a CPT code

25-OH vit D-The 25-hydroxy vitamin D test is the most accurate way to measure how much vitamin D is in your body.

In the kidney, 25-hydroxy vitamin D changes into an active form of the vitamin. The active form of vitamin D helps control calcium and phosphate levels in the body.

TSH-The TSH test is often the test of choice for evaluating thyroid function and/or symptoms of hyperthyroidism or hypothyroidism.

Free T4-Total T4 and free T4 are two separate tests that can help a doctor evaluate thyroid function. The total T4 test has been used for many years to help diagnose hyperthyroidism and hypothyroidism. It is a useful test but can be affected by the amount of protein available in the blood to bind to the hormone. The free T4 test is a newer test that is not affected by protein levels. Since free T4 is the active form of thyroxine, the free T4 test is thought by many to be a more accurate reflection of thyroid hormone function and, in most cases, its use has replaced that of the total T4 test.

Free T3-A T3 test is used to assess thyroid function.

Ferritin-The ferritin test is ordered to assess a person's iron stores in the body. The test is sometimes ordered along with an iron test and a TIBC to detect the presence and evaluate the severity of an iron deficiency or overload.

Serum Copper-If a doctor suspects copper toxicity, copper deficiency, or a disorder that is inhibiting copper metabolism, then he may order blood and/or urine copper tests along with ceruloplasmin to help evaluate the person's condition.

Plasma Zinc-Plasma zinc levels have been found to be dependent upon vitamins A and D. This suggests that a Vitamin A or D deficiency could cause a secondary zinc deficiency and that for treatment of zinc deficiency one should ensure adequate vitamin A and D intake.

Carnitine-free, total, esters-The primary function of carnitine in the body is to regulate fat burning and to help the body use stored fat as fuel. L-Carnitine is responsible for transporting fat to the powerhouse of our cells called mitochondria. Unless fat makes it to the mitochondria, it cannot be burned, no matter how much you exercise or diet! Carnitine works best with a diet low in carbohydrates and adequate amounts of protein, omega 3 fatty acids, and CoQ10.

Ammonia-The ammonia test is primarily used to help investigate the cause of changes in behavior and consciousness.

IgM, IgA, IgG titers-total-IgA, IgG, and IgM are frequently measured simultaneously. Evaluated together, they can give doctors important information about immune system functioning, especially relating to infection or autoimmune disease.

Homocysteine-A physician may order a homocysteine test to determine if a person has B12 or folate deficiency. The homocysteine concentration may be elevated before B12 and folate tests are abnormal. Some doctors may recommend homocysteine testing in malnourished patients, the elderly, who often absorb less vitamin B12 from their diets, and those with drug or alcohol addictions.

Hgb A1C-The HbA1c blood test — also called glycosylated hemoglobin, glycohemoglobin or A1c — estimates how well blood sugar has been controlled during the previous three to four months.

Plasma Amino Acid-This test is conducted in order to detect the content of amino acids in the blood. An elevated level of a certain amino acid is strongly indicative of a problem in the ability of the body to metabolize that particular amino acid. Improper nutrition, some medical conditions and fevers may cause a fall in the amount of amino acids in the blood. This test may also be done to detect such lowered levels.

Ionized Calcium-A blood calcium test is ordered to screen for, diagnose, and monitor a range of conditions relating to the bones, heart, nerves, kidneys, and teeth. Blood calcium levels do not directly tell how much calcium is in the bones, but rather, how much calcium is circulating in the blood.

Reverse T3-In times of stress, the body may need to conserve energy. Since thyroid hormone acts like our internal thermostat, thyroid hormones may be suppressed in times of stress. One way this is done is by converting the thyroid hormone T4 into an inactive form of the active T3 hormone called reverse T3. This lowers the amount of available active T3 which can lead to hypothyroid type symptoms.

The home tests are Urine Toxic & Essential Elements and Urine Toxic Metals from Doctor's Data. These tests: Urine toxic and essential elements analysis is an invaluable tool for the assessment of retention of toxic metals in the body and the status of essential nutrient elements. Toxic metals do not have any useful physiological function, adversely affect virtually every organ system and disrupt the homeostasis of nutrient elements.

We are also doing an Organic Acids Urine Test from The Great Plain Laboratory. This is what they say about this test: The Organic Acids Test (OAT) provides a metabolic “snapshot” based on the products the body discards through the urine. These small, discarded organic acid molecules are byproducts of human cellular activity, the digestion of foods, and the metabolism of gastrointestinal flora. At certain levels, organic acids in urine may be indicators of toxicity or “markers” of metabolic pathways. Metabolites of yeast or gastrointestinal bacteria appear against the background of normal human metabolites and provide an assessment of yeast and bacterial activity.

The new and improved OAT has increased the number of tested compounds to 70 (including Creatinine) and two new ratios have been added. The new compounds detected may result from variations in vitamin and hormone metabolism, energy level, intestinal wall integrity, neurotransmission, and muscle function.

The OAT offers the most complete and accurate evaluation of intestinal yeast and bacteria. These factors are of critical importance in neurological, gastrointestinal, and movement disorders. Abnormal toxic metabolites of these microorganisms can cause or worsen behavior disorders, hyperactivity, movement disorders, affect energy levels and immune function. Yeast can attach to the intestinal wall causing “leaky gut” syndrome, which can cause or magnify food allergies, impede absorption of vitamins and minerals, and cause intestinal disorders. Many people with chronic illness, allergic conditions, and neurological disorders often have one or more abnormal organic acids in their system. Factors which can cause or affect the intestinal yeast overgrowth include oral antibiotic use, excessive sugars in the diet, selective or combined immune deficiencies, genetic and other factors.

Once any abnormalities are detected, there is a variety of treatment options available to treat the condition. Treatments include antifungal or antibacterial products, probiotic supplementation, vitamins, antioxidants and dietary modification.

Patients and physicians have reported significant improvement upon treatment including: decreased fatigue, regular bowel movements, increased energy and alertness, increased concentration, improved verbal skills, less hyperactivity, better sleeping habits, and decreased abdominal pain.

We are also doing the Metametrix Microbial Profile. This is what they say about this test: The GI Effects Microbial Ecology Profile identifies predominate, opportunistic, and pathogenic bacteria using DNA analysis. Other analytes included are yeast/fungi, parasites, adiposity index, and microbial and fungi sensitivities. This profile helps monitor the intestinal microflora of the gut that are central to colonization resistance, which prevents colonization of the gut by pathogens.

Whew...that's a lot of information. I am fascinated to learn what this will all tell us about Sam. I am hoping that this is yet another piece of the puzzle in helping Sam be healthy, happy and reaching his full potential. Keep praying!!!