Gracie Facie

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Happy snowy February!

Many things have been happening since I last posted three weeks ago.  Grace is enjoying the snow.  She has great fun pelting me with snowballs as I use the snowblower.  Quinn started crawling two days ago, and Hollyn is not far behind.  Both saw the pediatrician yesterday, weighed in at 22lbs each, and the dr’s comment was, “they couldn’t be any healthier.  You make large children”.  Music to my ears.  Quinn can clap her hands, Hollyn is always babbling about either mamamamama or bob bob bob bob bob, and both smile all the time.  So precious!!  They are so easily amused and light up every time anyone looks at them.

I’ve been very busy not only with the twins, but with cooking, health food shopping and recipe hunting.  My knowledge of the benefits  of eating whole foods is expanding every day.  Lots of reading both on the internet and books has been even more eye opening for me. 

For example, we all know that MSG is a chemical flavoring put in Chinese food, right?  We also know that it’s really bad for us to consume and therefore only eat it once in a while, right?  Well, I recently found out that MSG is in a lot more than I ever suspected.  It is also known as ”natural flavoring”.  Try to buy a can of tomatoes without “natural flavoring” in the list of ingredients.  Try to buy a can of anything without it, for that matter.  I was stunned to see how many things in my home contain it.  It’s taken me a while to become an avid label reader, but my next step is learning to recognize the hidden nasties.  Dr. Oz was on Oprah a few years ago and gave a few helpful rules of thumb for label reading:

• If there’s more than 5 ingredients, don’t eat it
• If you don’t know how to pronounce an ingredient, don’t eat it
• If it says enriched or bleached anything, don’t eat it
• If it says hydrogenated anything, don’t eat it
• If sugar, in any form, is in the first 5 ingredients, don’t eat it

In the last two months, not only has Grace’s diet changed, but everyone in my family has done just about the same changes.  The babies are off gluten, dairy and eggs.  Todd, Grace and I are off gluten, dairy, eggs, and we eat limited amounts of organic meat and very, very limited amounts of sugar.  Todd installed a reverse osmosis water filter in our kitchen sink, so we no longer consume the heavy metals, chlorine and flouride in the tap water.  (The stuff in tap water is another horrific episode I’ll save for another day-you may want to do a little research). Ever since we have made these changes:

• None of us have been sick.  Not one little cold, runny nose or sore throat. 
• I’ve gotten my weight down to where it was before I had Grace!!  Pants I haven’t wore for years are perfect!  The best part is, that wasn’t my intention, just a beautiful side effect.  (Can’t wait for summer!)
• I have more energy than I can ever remember having.  I never crave a nap in the middle of the day like I used to. 
• We all sleep great at night.  Getting up in the morning is EASY.
• Babies haven’t had one diaper rash.
• Can’t remember the last time I had to blow my nose.
• My skin is healthier than it’s been in years.  (I’ve actually gotten unsolicited comments
• Grace’s chronic congestion is gone.

I could go on and on. 

A few weeks ago, I visited the Kinesiologist, Dr. Gandy,  for a few issues, the prominent one being a constant pain under my right ribs.  I had suspected it was my gallbladder for a number of reasons.  Anyway, Dr. Gandy did a lot of testing, agreed that it was gallbladder pain and addressed my other complaints.  The long the short of it is - the gallbladder pain and the other issues, some of which I’ve had for years, have all either improved or completely subsided.  She used clearing to help some of the issues, and sent me home with a gallbladder “support”, or a suppliment with things to help my gallbladder function optimally and to do the job of emptying itself out.  I have no doubt that had I ignored it, the pain would have continued and would have eventually had my gallbladder removed.  Yay for preventative measures!  At work that night, I ran my symptoms past a few nurses and one doctor, and they all agreed that they would’ve suspected it was a gallbladder problem.  An astounding amount of them said at that point that they had had theirs removed in their late teens or early twenties.  Apparently, it’s a very common surgery, like removing tonsils or your appendix.  News to me.  I also found out that gallbladder attacks are extremely stress related (imagine that), are common in post partum women, and they are removing more gallbladders than ever now.  Hmmmm.  I can’t help but wonder what would happen if more people knew that they hold their health in their own hands. 

As for Gracie, we have no new test results to report.  The nephrologist antipicates doing lab draws about every three months, and hasn’t heard back from the pathologists on the East coast, yet.  Honestly, I don’t hold out much hope from them.  Anything they may suggest will either be experimental or a shot in the dark.  If there was any solid or successful treatment, we would have known it by now.  But, fear not, I don’t.  Grace’s health is in our hands and spirits.  Dr. Gandy, and the naturopath, Dr. Kim are working hard along with us to achieve balance within Grace’s body, and that will help her to heal.  We do have real hope and anticipation that her kidney tissue will actually heal, and Grace’s condition will be reversed.  We know someone who did have success healing/reversing what doctors told him was fatal.  I hope to tell that story soon.  I need more time!!

 Please keep your thoughts bright and sunny when thinking about Gracie, or anything else for that matter.  I hope you are all healthy and happy and enjoying this beautiful winter season!

 Love, Angie

Hi again to everybody!  Well here I am, the only one awake at 9pm.  Todd will be getting up at 11pm to work the snow, and all my little girls are sleeping like they should.  Ahhhh.

So, I left off after the naturopath visit and baby cares.  The next leg on our journey was a visit to our Kiniesieologist/Chiropractor, Dr. “Kat”.  This was nothing short of phomenomenal.  Please keep your mind wide open, as the information I’m about to share is very non-conventional.   

The science of Kiniesieology is, in my opinion, astounding.  Their methods of using Muscle Response Testing (MRT), Nutritional Response Testing(NRT),  Allergy Clearing(NAET), Emotional Testing(EFT), etc., are incredible to watch and even more fascinating to experience. 

Using NRT to check for food allergies, Dr. Kat was consistent with the results of the earlier blood test, once again finding the problems with gluten, eggs, dairy and some nuts.  She determined Grace had a bit of an electro-magnetic issue, and as we all know, our bodies are electrical(it’s true, and scientifically proven).  Dr. Kat suspects it’s probably a result of being in the hospital, and being in the radiology dept for her biopsy.  The electro-magnetic fields in hospitals are incredibly potent.  The treatment for this is two tiny magnets for Grace to wear every other day, to activate points that will stimulate the kidneys.  Dr. Kat also tested Grace for emotional issues.  She found that Gracie does have quite a bit of emotional holding, especically in her kidneys. 

Here’s where it gets kind of creepy.  In Chinese medicine, it is believed that each organ is related to an emotion, a body tissue, a sense(sight, taste, sound, etc.), a season, a color, and a few other things.  The kidneys are related to the emotions of fear and dread.  Let’s review the past year, shall we? 

• “high risk” pregnancy-Mom’s terrified
• premature twins/NICU time-Mom’s terrified
• postpartum hormones-Mom’s a wreck
• not one, but two new babies in the house-Grace’s summer stunk
• breastfeeding hell-Mom’s a guilty wreck
• kidney problems discovered in Grace-Mom’s a wreck

So, want to know what Grace reacted to when tested further for emotional specifics? FEAR for Mom.  Goosebumps, huh?  Also, in my first entry, I mentioned that Grace had really poor hearing.  Can you guess what the sense related to the kidneys is?  Hearing.

There’s more to report from this visit, but it’s really late and I need to wrap this up. 

 By the way, Grace had a blood test last week and we recently got the results.  The nephrologist tested her electrolytes, which looked good, and her Creatnine.  The Creat. was 1.o at the beginning of December, and has gone down to a 0.8, which is great!  Normal Creat. level for her age is 0.5 or less, so the nephrologist feels Grace is stabilized and wants her to continue the low dose of the ace inhibitor she’s been taking.  Whatever we’re doing, it’s working.  Yay!

Thanks for all your support, positive thinking and comments!  They really do help.

I hope to get more pics of Grace or her artwork on soon!

Angie

Hi again!  Well, it’s been a busy week and I had hoped to write sooner, but here we are.  I keep getting so much new information and stories to share, I’m overwhelmed with it!  Here we go.

Last time I wrote, I had mentioned how the immune system begins in our gut, really in the digestive system.  Previously, I had been told that this true is because most of our immune cells are located there.  This stresses the importance of having a healthy digestive system, and that irritants like food allergies and gluten are very damaging to our immune health, often being a trigger for auto-immune disease.  

An astounding 70% of our immune cells are located in our digestive system!

Since my awakening after Grace’s diagnosis, people have asked me if I can have the twins tested for this condition.  My response was to ask Dr. Kim, our naturopath, if there was anything I can do to prevent auto-immune responses in them.  Once again, she mentioned how important the relationship is between the digestive system and the immune system.  Babies immune systems are still developing and building for the first two years of life and she suggested that all babies should be treated as if they have a “leaky gut”.  This just means that they are not able to handle or fully digest everything we give them to eat, so they need some assistance.   Dr. Kim gave me a few things to do:

• Put the babies on a pro-biotic, or acidophilus, one specifically made for infants.  This made a lot of sense to me.  When Q and H were still on breastmilk and battling constipation, their pediatrician thought it would be a good idea if I took acidophilus.   Also, my brother, Joe and his wife, Myra were recently at a nutritional seminar, and the instructor stated that EVERYONE should be on it, to aid in healthy digestion.  
• Keep them away from gluten and dairy for the first 2 years of life.  This is similar to the reasoning used when we’re told to keep kids away from berries, citrus, etc for that first year.  I ‘ve replaced Cheerios with puffed rice.  (Oats are loaded with gluten). The babies love the new cereal!
• Filter our tap water.  At the very least, get a Brita pitcher or a Pur faucet filter.  The heavy metals, chlorine and even flouride in our water is very hard on our bodies, espically those of infants.
• Give each baby 1/2 teaspoon of cod liver oil a day.  The vitamins and fatty acids found it it are excellent for them.  I put the Carlson’s brand lemon flavored into a dropper, and the girls willingly take it.  (you can get them to eat anything, if you program them early enough!)
• The bottles and cups they drink out of should be free from Bisphenol-A, found in most plastics.  There was recently a section in the Sunday Milw Journal/Sentinel all about this chemical that is  so disruptive to our endocrine systems.  This awful chemical should not be in so many things, but it is.  I ordered bottles and sippy cups from the Born Free website, so at least we can avoid it there. 

So, I feel I’m doing everything in my power to try and protect the babies from an auto-immune response, by giving them the strongest start I can.  Gently guiding their new little immune systems to proper development through healthy digestion and chemical avoidance makes so much sense to me. 

Every day, I feel stronger and stronger that the path we are on is for a reason.  Healthier living in our home, and sharing as much information as I can is my passion.  Thanks so much for all your cheerleading, prayers and positive thinking.  I really feel like anyone who supports me is giving me strength to stay optimistic and I am ecstatic to have so many great people around us!

Angie

Because this is a blog, I will probably periodically remind you to start at the bottom.  Latest is greatest, and on the top of the page.  Grace’s story is packed with beneficial information for anyone, and I wouldn’t want you to miss any. 

So, we left off with her diagnosis of FSGS with a collapsing variant. 

BUT……….before we had gotten the official diagnosis, all we knew was that Gracie was spilling protein into her urine and her creat. was high.  I took her to the naturopath right away. 

• Dr. Kim put her on an anti-inflammatory diet, excluding any foods that are generally irritating to our bodies.  (Wheat, pork, red meat, citrus, dairy, eggs, etc.  Too many to name!)  She requested that if we couldn’t get organic fruits and veggies, at least buy organic meats.  The antibiotics, hormones and animal by-products they give to these animals we ingest are so damaging to our systems. 
• She tested Gracie for food allergies.  This was just 3 drops of blood in a kit sent off to a lab that measures IGE and IGA levels. 
• Then Dr. Kim also put Grace on an acidophilus/bifidus powder, a digestive enzyme, cod liver oil, apple cider vinegar, a liquid B vitamin, and one homeopathic remedy.  These are all to boost her immune system and to aid in her digestion, as it seems her body is immune confused and having difficulty completely processing foods.
• We were to use a castor oil pack with heat on Grace’s belly every night, and do a little lymphatic massage, or skin brushing as well.

We continued with this for under a month, and pretty much fell off the wagon.  The nephrologist had Grace’s blood tested again and her results were anything but encouraging.  I was disappointed, and a bit discouraged.   A good friend, Amy, later told me that when you make a change, like a dietary one, it takes a good 4-6 weeks for the risiduals of the old stuff to leave, and another bunch of weeks for any treatment to take effect.  The effects are not immediate, as we tend to expect them.  Then we found out Grace’s allergies; eggs, dairy, gluten, almonds and hazlenuts.  We stayed somewhat true to refraining from those things, but still let things slide here and there. 

Then came the biopsy, and two weeks later the diagnosis.  This was completely life changing.  Devastating at first, (I was a mess), but this has grown into something powerful, somehow.  I’ve never felt so strong in my entire life.  More on that later.

So, the nephrologist gave her information, which is in my previous entry,  and I found the term “idiopathic disease” unacceptable.  That’s when my real drive began. 

We returned to Dr. Kim, the naturopath.  First of all, she agreed with me in that well, yes, it kind of is an auto-immune problem.  She was very reassuring that there are so many things we can do to help Grace, and I love Dr. Kim for never calling this a “disease”.  She went at the situation much more aggressively, and really began working hard on correcting Grace’s upside down, confused immune system.  In addition to her other treatments mentioned above, she did a number of other things.  There were a few other homeopathic remedies added, and one group of them is now helping Gracie with a “global cleanse”.  The cleanse also is targeting her kidneys and liver, really helping to drain the organs, as well as the rest of her, of any nasty toxins built up over time.  Dr. Kim specifically mentioned working to reverse any negative effects from immunizations.   We go back to see her at the end of the month. 

Our little Gracie is such a trooper about taking all this stuff, but frequently asks “when am I going to be done with this diet?”  I usually reply that everyone is on some type of diet.  No one can just eat what they want, whenever they want.  However, Todd, myself, Grace and the babies have made trips to the Gluten Free Trading Company, The Outpost, Health Hut, and an unsuccesful trip to Molly’s Gluten Free Bakery(they were closed….rrrrrrr).  We have found quite a few options.  Soy based cheese, which Grace actually loves ,  and we got a few bread mixes.  Yesterday we made our first GF(gluten-free) loaf using an egg substitute.  Grace loved it and is SO happy she can have bread for lunches at school again!  Woo hoo!  My point is that a big change in your diet can be difficult at first, but is worth it, and does get easier as time goes by. 

There have been a few great side benefits in Grace’s life that “accidentaly” came along with the allergy food avoidances.  Things that I never even considered health problems have gone away. 

• Grace used to always sound a bit congested, and never seemed to completely shake a cold.  She would seem to be fine after having a cold for two weeks, but at night for an additional two weeks, she would cough and hack and sometimes choke on phlegm all night long.
• At bedtime, she would sleep in almost nothing, claiming that pjs were too hot.  A short while after falling asleep, she was wet with sweat and had thrown the covers off. 
• When Grace would have a cold, she could barely hear. 

Since changing her diet, Grace has had a bad cold that came and completely left in UNDER A WEEK, her hearing is not an issue, and she sleeps with covers on, sweat free every night!!  What a wonderful and exciting side effect! 

A good friend of mine, Kristen, just sent me an email yesterday telling me that she was recently diagnosed with celiac-gluten intolerance.  She got a gluten-free cookbook and there was a quote from it that I feel speaks volumes……see for yourself.

“Early man hunted for meat and fish and gathered fruits, seeds, herbs, tubers, and roots.  As civilization progressed, crops of complex carbohydrates were cultivated for the purpose of stabilizing food supplies.  Rice was the most cultivated species in Asia, sorghum and millet in Africa, and in America maize, or corn, was the major crop.  Wheat and barley containing very low gluten content were grown only in Southwest Asia.  As time went on, farming of wheat and barley spread into Europe.  But our ancestors never ate bread as we know it today.
The industrial and agricultural revolutions of the past 200 years have changed our diet faster than we can change genetically.  Today, our wheat crops have a high gluten content (50% higher than centuries ago in some cases) for the purpose of improved bread baking, and with it we see a rise in the prevalence of gluten intolerance.  Just as humans are predisposed to store excess calories as fat, the same genetic make-up that tolerated wheat with low gluten levels cannot tolerate modern foods with high gluten levels.”

(Thanks for letting me share, Kristen!)

Doesn’t it make you wonder what you’ve been living with unnecessarily?

Seriously.

Well, it’s getting close to time to wake up, so I’d better get a nap in.  I am just bubbling with excitement to share everything I’ve learned and gathered through this so far – I can’t wait to tell you the rest!

Let me leave you with this.  My sister Myra told me yesterday that she had just been at a Chiropractic Seminar and the instructor was talking about the energies within and surrounding us all.  He said, “Energy combined with thought expands into reality”.  I’m finding this to be true.

I hope you find my energy infectius and spread it in your own life!

Once again, I love each and every one of you for your positive thoughts and your support.

Angie

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Welcome to the wonderful world of Grace!  My intent with this site is to keep informed anyone who wishes to keep up with Grace’s status/developments/treatments.  We are so lucky to have so many friends and family who love and care for us, and everyone has asked to “keep me posted”, so here we are. 

I just need to say thank you to all who have been helpful the last week or two.  All your prayers, I believe, are helping me to be very strong in my will to resolve this for Grace.  Also I have a huge thankyou to give my friends, Suzy and Aaron S.  Aaron is allowing me to go through his server and set up this blog for me.  THANK YOU!! 

Let me start at the beginning………

In September 2007, Grace had her 5year old school physical and shots.  Her pediatrician, Dr. Amy, did a normal urine screen and found that Grace was passing protein.  We tested her again one month later and found the same results.  We were sent to Children’s Hospital in Milwaukee, WI to do some blood tests and find out just how much protein she was spilling.  We discovered that her protein was very high and her creatinine was almost double what it should be.  This news earned us a visit to a Nephrologist, Dr. Pan, head of the Nephrology Dept. at Children’s Hospital.  There they did an ultrasound of Grace’s kidneys and found they were both of normal size and shape, but looked “lighter” than normal.  Dr. Pan encouraged us to allow a kidney biopsy on her, and by the beginning of December, 2007, she had one done.  The results were devastating. 

Dr. Pan told us that Grace had a rare kidney disease called Focal Segmental Glomerulo Sclerosis, or FSGS.  I asked how rare and Dr. Pan replied that children from all over the country are treated here for this, and she only sees 3-4 new cases a year.  It is considered an idiopathic disease, or one where the cause is unknown.  It is very difficult to treat.  As if this wasn’t bad enough, she has an even more rare form that is only called FSGS with a “collapsing variant”.  Some of the glomeruli on the biopsy showed that not only were they scarred, but collapsed as well.  They found that 25% of the glomeruli are severely scarred, and another 10-20% are moderately affected, so basically she still has 50-60% kidney function.  This is fine as long as we can stop the progression of this “disease”.   Dr. Pan stated that her job is to slow the progression, but that almost everyone with this specific variant will go into renal failure and need dialysis and/or transplant. 

Dr. Pan stated that she had not actually seen this specific form, and was not confident in how to treat it.  She requested our permission to send the biopsy results to two doctors who were just finishing a trial on FSGS.  One at NYU and another in North Carolina.  We agreed, and she hopes to get some guidance from them on possible treatment options.  So for now, Grace is on an ace inhibitor, a type of blood pressure medication, and until Dr. Pan hears from the East coast doctors, we have no other information from the Western medicine front.  HOWEVER…………

 When Western medicine says “I don’t know”, I turn to alternative medicine.

Grace is now under the care of two more incredible physicians.  One is a Naturopath, Dr. Kim S., and the other is a Kinisieologist, known as “Dr. Kat”. 

Over the last week, there has been a lot of piecing together of information on my part, with the help of many listening ears.  I have an amazing bunch of people surrounding me, who are just loaded with ideas and knowledge.  I now know why so many of you were placed in my life. 

Within a few days of getting the FSGS diagnosis from the Nephrologist, I came to believe that the thing that’s affecting her is a type of auto-immune disease.  This is based on a few factors:

• one of the options for FSGS treatment through the Nephrologist was immuno-supressing drugs, even though she denied it was a typical auto-immune disease
• auto-immune disease is in my father’s and mother’s immediate families, and is also in the paternal side of Todd’s family.  There is Guillaune-Barre, Rhumatoid Arthritis in a young individual, 2 cases of MS, as well as a severe auto-immune reaction affecting intestines and kidneys in one family member.  This indicates to me that there is a vulnerability within my children espically, to auto-immune disease. 

•  Post-transplant, FSGS has a fairly regular occurrence of returning and attacking the new kidney, indicating that it’s a systemic problem.

• Increased presence of immunoglobulins found in people with food allergies and also those with auto immune disease, making a connection between the two.  Immunoglobulins  are also found in people with FSGS.

On our first visit to the Naturopath, Grace’s blood was tested for food allergies, looking at IGE and IGA levels.  She reacted highly to eggs, dairy, gluten, almonds and hazlenuts.  Three of these categories contain foods she has eaten multiple times daily her entire life.  Dr. Kim, the Naturopath explained to me that the immune system begins working in our digestion.  You ingest something, and your immune system has to determine what to do with it.  If you are eating foods all the time that are irritating your digestive system, espically gluten, which happens to be a huge aggrivator of your immune system, this is a recipe for trouble.  Now, I add in the genetic predisposition to auto-immune disease, and there we are.  Please keep in mind that the conclusion in regards to the auto-immune response is mine,  based on information I’ve collected from many sources.  Also keep in mind that Western medicine has no starting point for an explaination as to the cause of this disease. 

 Well, I think this is a lot for people to digest, and Hollyn and Quinn are needing me, and Grace would like to visit Bert on the Sesame Street website.  So, I will continue where I left off soon.  Thanks for visiting!

Staying Positive,

Angie

This is what I picture in my head-Grace as a strong, healthy, 6 year old girl!