6 Years for a complete diagnosis! This HAS to change!

My daughter was first told she had NASH in 2008 at age 11, now I know that there is NO way that this pediatrician could have known if this was NASH or NAFLD from the ultrasound and blood test results but he was the first to say no reason to do a biopsy or any other tests. My daughter would just have to exercise and eat better.  No other advice was given, no direction as to what it means to eat better with liver disease.

As the years went on we had all kinds of doctors discount my daughters illness, I asked for referrals to a hepatologist and we were sent to a gastroentologist who also shrugged their shoulders and said no point doing any additional testing. My child has been through hell for the last 6 years with extreme vertigo, broken bones that wouldn’t heal, extreme menstrual bleeding and more colds and flus than I can count. Nothing is simple for my daughter any type of trauma to the body in illness or injury takes her down for weeks, never just days like the rest of us. 4 months for a broken toe, that the rest of us would see heal in 6 weeks!  No doctor has ever said hmm well maybe the issues in her liver are causing other things not to work as well in the body.

The liver controls our immunity, the liver controls our metabolism, our eyes, our toxins to the skin causing rashes. When your liver is compromised then there are serious impacts on your day to day life.  But no doctor has ever figured this out for my daughter.

So last week my daughter had a new non invasive test in Toronto called the fibroscan.  This does not need a referral and we were able to book a quick appointment If we had not had this test done we would still be in the dark as to the actual condition of my daughters liver.  The test was easy and fast and no negative impacts on my daughter. The results say that she has mild stage 1 steatosis and mild stage 1 fibrosis. The most important part is clearly fibrosis. This means that she has scar tissue in her liver and it means that the disease is more serious that any doctor has ever considered.

The good news is we now have a baseline to work from and we will focus everything on getting that fibrosis reversed. However, what we will never know is was the disease worse 6 years ago? Has it improved or gotten worse?

If any doctor in the last 6 years had considered the full picture for my daughter ,maybe we could have done this sooner. but nope she will be just fine they said…. Fibrosis folks …not just fine.

Demand that your doctor get the official details of your disease with a biopsy and/or a fibroscan! DO not let them say you will be just fine! IF we did not take this seriously my daughter could be on the transplant list by now. If not for my supporting those with this disease and not letting it go….this could be a much worse story!

 

A Fatty Liver Disease Story – Don’t let this be YOU!

So your doctor has indicated that you have a fatty liver and that you should go home to diet and exercise.  You trust your doctor they have taken care of you for years. You don’t pay much attention to what he said about diet and exercise. If this was serious he would have been more concerned.  You go on with your life, wings and beer with your friends, ice cream and soda pop with your kids. Life is fun and you don’t feel sick. Exercise is walking the dog 2 times a day you make a point of using diet pop and low fat products at home so you know that you are going to lose weight someday.

A year later and you start to notice that you are having a lot of stomach aches that make you remove spicy wings from your diet.  This doesn’t seem to help so you keep eliminating foods you think might be causing them… You start to notice that on the walk with the dog you are getting tired much faster. You promise yourself you will start to go to bed earlier at night that should help.  Overall you feel off but your life is stressful and you are aging so it all makes sense.

You get the kids to walk the dog. You know you can’t give him the exercise he needs so you give that up. You mention to your family that you aren’t feeling well and they laugh it off and tell you to stop eating chips!  You start to notice that you are incredibly itchy. You are sure something isn’t right so you go to the doctor.  The doctor gives you a steroid cream to help with the itching and suggests ant acids for the stomach aches. As for the general malaise he suggests a multivitamin and asks you to come back in 3 months to see how things are.

You come down with colds and flus and you can’t seem to fight them off anymore. You load up on Vitamin C and make a note to talk to your doctor about that. You are so tired but when you lie down to sleep you are awake with the pain in your stomach. You are taking so many ant acid tablets but they don’t seem to help. The itching seems to move all over your body, there is not enough steroid cream to cover your whole body. You get aggravated easily and your memory seems to be failing your family is getting tired of your constant whining and complaining.

When you go back to your doctor you tell him that you are fed up with feeling awful. He decides to run another blood test and refer you to a gastroentologist. The appointment for the gastroentologist is in 3 months.  Your doctor doesn’t call back regarding the blood test so you wait for the gastroentologist appointment.

The specialist looks over all your reports. He isn’t sure if this is a gallbladder, or pancreas issue or possibly a liver issue. He orders an ultrasound to see what is happening in your stomach. He sits you down and tells you that based on what he sees your liver is in trouble.  The specialist schedules you for a biopsy and tells you that you have NASH. The biopsy will be scheduled as soon as possible.

After the biopsy you learn that you have NASH and it’s leading to Cirrhosis.  WHAT?? How would I get Cirrhosis? I don’t drink that much I am not an alcoholic!  You have Non Alcoholic Fatty Liver Disease.  It’s a shame you didn’t catch this before the damage was done. We will monitor you closely but you are headed for a transplant.

Please do not be him, when the doctor tells you that you have Fatty liver disease pay attention and change your lifestyle before it’s too late.

Fatty Liver Disease – Do Not Dismiss this Diagnosis!

Fatty Liver Disease is a growing epidemic all over the world. I have been writing blogs and running a support group for people with this disease since 2008. The group has well over 1000 members now and I have learned a lot from running this group for the last 6 years. I have started writing a book that will be available this spring that shares stories and quotes from the members of the group and covers the following topics in detail plus lots more!

1. This disease doesn’t only impact obese people! People with eating disorders, skinny fat people with fast metabolisms can be impacted if they are malnourished. Children as young as 2 are in my group and there are at least 2 genetic factors that have been identified so far.

2. Its Not just Food! Food absolutely plays a large part in the management of this disease. If you have lived on processed foods your whole like you have a lot to learn about eating healthy to protect your compromised liver for the rest of your life. Acetaminophen is being overused and it is creeping up to becoming one of the main factors in causing Fatty liver Disease. Statins show up a lot in my group being pointed at as a high number of people get diagnosed after they start that prescription. Antibiotics, chemicals that you work around, products that you put in your hair or on your body can also be the root of your compromised liver.

3. There are REAL symptoms associated with this disease. No matter how often a doctor will tell you its benign I can tell you from 1000 people that there are shared symptoms within the group and if most of them share a symptom I am confident that the symptom is related back to the compromised liver.

4.People die from ignoring this disease. I have seen at least 10 people die in the group in the last 6 years. The truly sad part is that it is usually due to the fact the doctors told them that they just needed to exercise and lose weight and the problem would go away. That can be true if you do that at the beginning of the disease setting in. BUT if you do not figure out WHAT caused your disease and eliminate that item I can promise you that your disease will continue to grow until you start to deal with water retention and are being admitted to the hospital because your liver is extremely damaged now and you need a transplant. This can be avoided by truly analyzing your lifestyle up to the diagnosis and determining what the possible sources might be.

5. There are success stories! I have members who have had transplants and members that have reversed the disease in its early stages.

 

If you would like to be part of our fatty liver disease support group you can find it here at this link:

https://www.facebook.com/groups/fattyliversupport/

 

Growing evidence of childhood fatty liver disease

I am seeing a number of studies and proof to support something I have known since 2008. Our kids are in serious trouble for their futures if they live on processed foods, soda pop and sauces coating anything natural. Finding those kids out there is a challenge. We have about 6 children in my fatty liver disease support group on Facebook ranging from age 2 – 18.  This is 2 girls and 4  boys which is not by any means a predictor.

Doctors DO NOT look for liver disease as a rule. They are NOT taught to look for the disease. They will blame the pancreas, gallbladder, IBS, Celiac Disease, Diabetes before they would even pay attention to elevated liver enzymes.  As a Parent you need to pay attention to your child’s symptoms and NOT be too quick to blindly trust the doctor.  Demand a blood test for your child. review the levels for AST and ALT and ask your doctor what the safe levels are for enzymes. As for an Ultrasound of the stomach.  If the liver has fatty deposits they will be shown in this test.  Ask for genetic testing they are now proving there are genetic links to fatty liver disease. I am not saying every child has a problem with their livers but I would bet my life at this point far more do then are being diagnosed. Studies say between 3 – 13% of kids have fatty liver disease. I suspect its closer to the 25-30% that is happening in adults.

These kids generally have homes where both parents are working. There are few home cooked meals because parents are stressed out and running between all the soccer, dance, skating, hockey, baseball games that kids are involved with. Or because they can’t get their kids away from the video games and their kids are picky eaters who will ONLY eat hamburgers, chicken nuggets , macaroni or other standard processed or junk foods.

The very sad reality is that these products are created by companies who know and love the fact that people get addicted to their products. If your kid eats it once and it has high fructose corn syrup in it there is no message to the brain to tell them that they are full. and there is no balancing of the sugars. This creates a fatty cell in the liver and your child becomes addicted to those products.

So when they are eventually diagnosed with Fatty Liver Disease or Diabetes or other metabolic disorders you will find you have a child who is trying to sneak foods, or find ways to drive you nuts until you give in. The problem is that they are actually ADDICTED to these products its like they are coming out of alcoholism or drug addiction. Everything in their body is telling them they NEED those foods.  You essentially need to accept that your child is in withdrawl

You have to be strong and fight for your child. This disease can and does lead to liver failure. Doctors and researchers have no understanding about this disease right now. They are all fighting to find the answers but we are dealing with it TODAY and don’t have time to wait for them. I am aware of 2 men in their 30′s who died of liver failure due to fatty liver disease. Neither of them were alcoholics or drug addicts. They were only in  their 30′s. I suspect you want your child to experience life longer than that!

This generation of children are the first generation which will live shorter lives. This is directly related to processed foods and additives and genetically modified foods. Our body’s DO not know how to process these chemicals. Our poor children do not stand a chance in this world of Monsanto versus humans.

If your child is dealing with chronic illness that doesn’t get better. Try getting rid of sugar! Getting rid of junk food, do they start to feel better? You will find after 3- 6 weeks of not eating those things or drinking sugary beverages they will feel healthier!

Parents please pay attention and do not go blindly into dealings with doctors. Get the right tests, keep all test results…you need to take this into your control for your kids sake!

Arbonne Body Care and Cosmetics – Fundraising for MetoWe Camp!

I have been lucky enough to try Arbonne products thanks to numerous amazing ladies I am connected with on social media. Arbonne® products are vegan-certified: their formulas are never tested on animals and do not contain animal-derived ingredients or animal by-products. Due to the growth in Metabolic disease and Non Alcoholic Fatty Liver Disease this is very important to me and to those I care for. The chemicals being added by other companies are hurting our bodies in a toxic world.

To read about the products go to http://www.arbonne.ca/products/index.asp

To read about the company go to https://www.arbonne.ca/company/manifesto.asp

Megan wants to attend A Social Innovation for Change Camp this summer. This camp offers an amazing leadership opportunity that will be able to help Megan bring back to our community through volunteer work and other humanitarian efforts. Megan will be working with industry professionals to help her learn ways to create tangible changes. To learn more about this camp go to Me to We’s website.

http://www.metowe.com/motivation-leadership/take-action-camp/ontario-take-action-academy/#social-innovation-for-change-fostering-creative-and-innovative-ideas-for-positive-social-influence

Megan is 16 years old and a junior at Sir Frederick Banting Secondary School The opportunity to attend this camp would mean the world to her as she looks towards a career in human rights law after fighting for 6 years with a chronic illness called Non Alcoholic Fatty Liver Disease that left me in various states of extreme sickness throughout that time. She has impressed Investor’s Group enough so that they have given her a bursary to  cover some of the costs, but with me as a single mother she need help to raise the remaining funds. Human Rights are a huge passion for her and she will  make a difference in both the local and international community.

Janet Auty-Carlisle is a great friend that I have not had the pleasure of meeting in person but I have known on Social Media for a good 5 years. Whenever there has been an opportunity to support Megan and I in that time she has always stepped up and been wonderful.

Now she is offering to give Megan a nice percentage of all sales in May for Arbonne products purchased online with Janet’s Sales ID.

So if you want to help Megan and you want to help your body by using non toxic products go to

https://www.arbonne.ca/shop_online/shopOnline.asp

Orders can be placed in North America, United Kingdom and Australia. You will need to enter the 9 digit id 115726215 to get the fundraising donation to Megan.

Thank you in advance from your liver and from Megan!

 

Baking Fundraising for Me to We Camp!

Megan Clermont described this perfectly I have adjusted slightly.

Do you like baked goods and helping out a good cause?

For the month of May my daughter will be baking a variety of home baked cookies, breads, and cupcakes with all proceeds going towards fees for a Me to We Take Action Camp this summer. Prices for these items range from $1-$7.50 with a total of $500 needed to be raised for the cost of attendance.

This camp offers an amazing leadership opportunity that will be able to help Megan bring back to our community through volunteer work and other humanitarian efforts. Megan will be working with industry professionals to help her learn ways to create tangible changes. To learn more about this camp go to Me to We’s website.

http://www.metowe.com/motivation-leadership/take-action-camp/ontario-take-action-academy/#social-innovation-for-change-fostering-creative-and-innovative-ideas-for-positive-social-influence

Megan is 16 years old and a junior at Sir Frederick Banting Secondary School The opportunity to attend this camp would mean the world to her as she looks towards a career in human rights law after fighting for 6 years with a chronic illness called Non Alcoholic Fatty Liver Disease that left me in various states of extreme sickness throughout that time. She has impressed Investor’s Group enough so that they have given her a bursary to  cover some of the costs, but with me as a single mother she need help to raise the remaining funds. Human Rights are a huge passion for her and she will  make a difference in both the local and international community.

If you live in the GTA of Toronto Ontario or Southwestern Ontario we would be happy to deliver the baked goods to you. Sadly we can’t do this beyond that geographical area.  There will be 2 days that deliveries will be made to the Toronto area. This offer is limited to the month of May 2013.

In order to support Megan in this amazing opportunity please go to the attached order form and fill out your information and order request and submit to have it sent to Megan.

https://adobeformscentral.com/?f=PbKTYKRgo2IZr23pmmLnIA

 

 

 

 

 

 

Austin’s Story – 14 year old with Fatty Liver Disease – Guest Post Cat Case

My Sons Journey to Diagnosis of Liver Disease

By C. Case©

At age 14 my son was diagnosed with Liver Disease. From the time he was born up until this diagnoses, I just knew something was very wrong with my son. He was born weighing 7 lbs 1. oz  after 8 weeks old his weight tripled and he was constantly hungry, and either had constipation or diarrhea. By age 3 he weighed 70 lbs. By age 6 he lost the weight as he also was diagnosed with ADHD and was on medication.

As an infant and toddler he ate fast and so much he threw up everything that just went in him, and I mean projectile vomiting. He also had digestive problems we went through so many different diagnosis it was spinning my head.  We went from formula allergies to wheat and lactose intolerance. My son had severe gastric reflux and he does have burn scars on his throat from it. My son started to get severe diarrhea, where I took him to the emergency room and they kept telling me it was just the stomach flu. I was like okay and went with the doctors order, but it just continued on.

My son started gaining back that weight even being on the medication for ADHD at age 8  He has had a gastroenterologist that he has been seeing since an infant on and off. It has been about 3 years since he has been back to see him as he ruled my sons problem to a wheat sensitivity, lactose intolerance and severe IBS. He has had a colonoscopy and endoscope and age 9. I was getting concerned as my son has put on a great amount of weight by age 11, he is now 14 and is 5’8 and weighs over 200 lbs. At first I though maybe diabetes since that runs in both sides of our family, but his sugar lever was elevated but not that much, then I am thinking he has an eating disorder, that was not it either, then I am thinking heart issue possibly? His heart is fine as well.

My son in the past three years has missed so much school from either vomiting uncontrollably to a severe case of diarrhea or constipation and cramps. He put on over 80 lbs since this time last year. He also has migraines associated with the above mentioned . He still has episodes of vomiting and having diarrhea or severe constipation and this year he was complaining about cramps and pains under his rib cage on his right side. If he ran in P.E. He could not go far as the pain and cramps became unbearable.  His disposition was always irritable, and just plain mean when he was having flare ups.

I took my son to the doctor last month for a check up as he was having bad migraines, and diarrhea, the doctor run a blood panel on him and his liver enzymes came back elevated, we waited to 2 weeks to go back and have it redone and it came back elevated ever more. She sent him for an ultrasound just last week and within 45 minutes, my doctors office calls and tells me the news that he has Liver Disease as in a NAFL and to lower his calorie intake and certain carbohydrates and for him to get out an exercise if possible and to stay away from certain foods. His Cholesterol is also high its at 245. Apparently his liver is not breaking down any of the fats in his system for some reason and is just sitting there,. I am surprised that his PCP did recommend him to see his gastroenterolgist or a hepatologist. So I will contact his Gastrenetologist for further assessments on the issue.

So for now my son is on a low fat, low carbohydrate diet, he is drinking a lot of water and is off soft drinks and he is making good choices in school for lunches.

 

Join our group on facebook https://www.facebook.com/groups/fattyliversupport/

Follow us on Twitter @fattyliverhelp

And join our website with patients helping patients at http://www.reversefattyliverdisease.com/