The Challenge of running a support group, restoring my passion

I left the Fatty Liver Disease Support Group I created 6 years ago on Monday after 2 senior administrators left and deleted me from their Facebook. I have known both for 3 or more years and i was friends with their family as well. I was told the drama in the group was my fault for not standing up for them clearly. That I am too lenient and I am too often allowing people to come to the right answers for themselves once they have been advised on things like not using supplements. That I am the reason for the dysfunction that happens in there

I want to be clear that I understand their viewpoint. When you are on the edge waiting for a transplant or you have had one there is a desperate need to demand that everyone else NEVER get to their stage of this disease. I agree completely with this, but my confidence has come from the fact that I am unaware of a single member who came in to the group with early stage fatty liver who has actually gotten worse with the advice given in here about eating natural foods and stopping the processed foods as much as possible. You are looking for a ratio of 90% natural and 10% processed.

I did a lot of soul searching on Monday and cried a ton of tears. I was blamed for drama on the weekend that i was not a part of, i did not witness but that i received 10 emails from angry members about how things happened with deletions and how it was handled.

The issue on the weekend was actually about a celebrity who is extremely controversial that some members wanted to see as a spokesperson and other members were dead set against him.

This had NOTHING to do with the disease and the group at the end of the day. Having someone famous talk about the disease would be helpful but they should be a little less offensive to a large portion of population.

I came to a decision that i would stop running the group if i was truly damaging it by being to kind. I even started accepting that after 6 years pouring my heart and soul into this group that maybe it was time to back away.

I received a large number of emails of support from within the group Monday and I am forever thankful to those that took the time to check in on me.

Tuesday morning I believe God intervened.

1.A local city politician asked to meet with me and have me help him because he has just been diagnosed with fatty liver disease. He respects this is a business for me and wants to pay me to teach his family how to read labels, how to determine what is a gmo veggie and which are not. How to start a small garden and how to conveniently start making meals from scratch.

Once i spoke to him i was energized with my passion for this disease and helping people again. The negative messaging about whether i am doing a good job or not seemed less important.

2. In the afternoon I received a tweet asking me what i wanted to ask for funding for from a group that helps create campaigns for crowd sourcing. I told them about my visions for raising awareness on fatty liver and they see it as a very worthwhile cause and they will help me get this going.

I rejoined my group on Tuesday I was clearly receiving messages from the universe that told me this is too important to back away from.

On Wednesday I was asked to speak at a women in progress lunch on avoiding fatty liver disease at the end of April and I will also be on a talk radio show in Toronto talking about fatty liver as well.

So while i am still quite hurt by the events of this, i lost a large number of friends because i try to look at all sides of a story before i make a decision. Each one who left and deleted me thought i was supporting the other side, when in fact i saw that they all had a point.

If you have gotten worse while you are in my group please let me know. If this is a common event I will reconsider my position again. I want to help not hurt people.

Please be kind to each other and please be even kinder to your liver

Another Fatty Liver Death, Get Tested, Find Support!

One of my Fatty Liver Disease group members sadly shared that her good friend’s brother Dan had died from NASH last week. Dan did not find out he had the disease until he went to hospital in December after thinking he was experiencing a stroke. Once he got into hospital they discovered it was extremely advanced Fatty Liver Disease.  Dan spent December – February in hospital with no hope of recovery. He died within 2 months of learning of the disease.

This chills me at a number of levels. Firstly….EVERYONE needs to have a yearly physical. I know there are a ton of people who hate going to the doctor, I am even one of them. BUT yearly you need to demand that you are given a blood test and that liver panel tests are done. IF you find this disease early YOU CAN REVERSE IT. Doctors DO not know why this disease progresses to the more serious level of NASH. So unless you are diagnosed early and you find the support you need to make changes to improve your health there is an unknown risk of this developing to a deadly diagnosis.

Even if you find out that you have NASH with Fibrosis  finding a good support group can mean that you SLOW or stop the progression of the disease. I have a large number of members who are staying stable at a higher level of the disease by altering their lifestyle choices to prevent further damage to the liver.

Our Fatty Liver Group on Facebook was created in 2008. We have over 1200 members from all over the world and we are a very active supportive group. Please see some of the comments below for what people said when I asked what the Group means to them. I am sure you can relate to one or more of their stories if you have been told you have fatty liver disease.

To join the group https://www.facebook.com/groups/fattyliversupport/

 

Elisa Davis I love this group…you all have made a huge difference in my life since joining…i have more answers to my illness….the support is so wonderful

Mike Murray It’s so hard to talk to people about our fears, enzyme numbers, successes. Who knows what enzyme levels even mean? It’s meaningless to most people. I can’t imagine the past few months without the support I have from this group

Theresa Prebula I don’t feel as lonely and crazy about how feel with my liver disease.

Bill Pinson I wish I had checked on a group like this or had more information, I may have been able to keep from needing a Transplant, could still have my old job and my life would be as it was. I lost my retirement, nest egg and all savings along with material things I had accumulated to keep the family going.

Priscilla M Simoneaux I have enjoyed the fellowship with other people who understand what I’m going through bc they have the same disease that I do. I don’t have to make excuses or explain myself. I’ve enjoyed getting info and encouragement from others to help me with this and to stick to this new healthy lifestyle before it progresses. Mostly, the friendship from you Michelle Clermont and the info you’ve given with your work that your doing to take this to a national stage to get the world to notice what’s going on and to take this seriously. Not enough is being done to make the younger generation realize or understand what leads to this. I don’t feel alone or lonely bc I have this group and I know bc of you that there are others out there going thru the same thing I’m going thru.

Nancy Fowlkes I love being a part of this group. Sadly I didn’t know about it before all of this happened to me but I feel like I have learned a lot and hopefully I have helped others too. No one else knows quite how it feels unless you are going through it our helping someone else go through this. I don’t know if many people know this or not but this group knew about me way before I knew about you guys! Pam Qualls Maloley heard about my story through a good friend of mine and shared my journey with this group and some of you joined my prayer page and followed me. That meant a lot to me! Fortunately I made it! But I was in the same position her friends brother was in. It was too late for me to reverse it. You guys are great and I appreciate the friendships that I have made and this group helps keep me sane sometimes.

.Pam Qualls Maloley The friendships I have made in this group have become family, one even helping me out financially. No matter what the outcome of this disease for me, I will count it a blessing because of these people.

Linda D Roy I am new to this group but have learned so much. Group of loving people who understand because they are experiencing or have experienced similar things. Glad that I found this group and hope I can in some small way help someone or encourage someone else. One thing I can certainly do … Pray for everyone

Francine Irwin McGerty I know I haven’t been around on here a lot lately..but this group has changed.my life! You’re my family, you’re my friends and your the only support I have. Without this group I would have given up. And I can vent to anyone on here and no one judges me. You are all always here for me. Xoxoxox

Ganny Piro The people on here have made me believe that I am not crazy! My Doctors have not taken me seriously for years. I am now taking control of my life and my health. I will be eternally grateful for the support and information you have given me. Although we may live worlds apart you all feel like part of my family. Thank you!

Melissa Harbin Waid I felt alone & in the dark 4yrs ago when I was diagnosed. I was constantly reading and searching on the internet for answers to my questions..even though I have a fabulous hepotologist and supporting family I was afraid of dying. when you go in the hospital to get your gallbladder out and the surgeon tells you “you have cirrhosis ” that’s hard to swallow! 
I am very thankful for this group & all of you..there are few that I have become very close with and have a personal relationship with & feel like I have known forever though i’ve never meet them in person. 
Michelle Clermont, the founder of this group, I ‘ve said before to you that it saddens me that you found it from your daughter’s illness.. I applaud you for being the mother that you are and fighting for her. In the process we are benefiting from it..I thank you and I love you! We are here for each other whether it’s 2:00 in the am or 2:00 in the pm..that’s why I love this group.

Sara Skinner I was very scared and confused at first. I am only 30 and not a big drinker. Although the DR said it was Non-Alcoholic I only ever related liver disease to people who were considered heavy drinkers…and that is what most people think where they hear that I have liver disease. I don’t even argue with them. I know that people who really know me and care know that I am no alcoholic that drank my liver bad. This group gives me strength and courage to face the disease. It made me want to learn more about what is going on in my body and what can happen. I have learned of certain signs to look for to know what to ask my doctor about.

Gwen Davidson I didn’t think it was a big deal as I was told you have fatty liver. Lose weight exercise more. Nothing else. This group has made me realise it is a big deal and that I need to take control of my health  I also now have a list of questions to ask my doctor when I see him on the 27th.

Belinda Anne Tamara Sydenham I love this group. I have made so many special friends like DaliborMichelleRuth to name a few I know there are others that has helped me as well and still are. for me I find I have trouble talking with people cause I am so shy and all so I always bottle things up inside of me. so when I found this group I thought why not join and since then I have been given words of encouragement and have learnt alot along the way in my healthy journey in trying to stay healthy. So I thank you to this group for everything!
Kiran Chatha It gave more insight in to what is happening inside my stomach. It gave me a hope that, yes, I’ve real friends who can understand my situation and propose possible solutions. It gave more knowledge about my situation and now I can ask the Dr more questions. Can take more informed decisions. It made lot of difference. My mother passed away almost 15 years back with Cirrhosis. Had this group existed that time and had I been part of it, it could have made a difference. This group means a lot to me. Thank you all for your support. And thank you Michelle, for creating this group and making me part of it.
Robin Shaw When I was told I had NAFLD, I was also told that lots of adults have it and it’s nothing to worry about. So for a year, I took the advice and went on my merry way. When other health issues came up and I started looking for answers, I found this group. It has been encouraging, informative, at times heartbreaking, often funny…it is a safe place for me to learn how to cope and how to care for myself. In this group, I feel loved, accepted, understood, challenged to keep making the right choices…it feels like family, and I’m so very thankful for y’all!
Ruth Pinciotti Shegda I have tons of health issues from having an undiagnosed autoimmune disease until my 40’s. When my doctor told me 4 years ago that i had a fatty liver – – and do not worry just lose weight, alot of people have it”..i believed him. In 2013 when i had my annual ultrasound for the liver he told me you have gallstones. I decided to research on my own and found this group. it saved me!!! I finally understood what was wrong and what proactive steps that I had to take to help it not progress further. So many people here including Michelle Clermont, Melanie Melaine Smith Dalibor Smolík to name a few have been so patient and kind in answering even the smallest question that I had. I also made amazing friends in several members.
Marguerite Elliott Even though I’m 4 years post transplant, it was not until joining this and the Transplant Survivors and HE group, that I have become more aware of what happened to me. Although diagnosed with NASH in 2007, I personally had no idea of what lay ahead. I truly thought that having the varacies banded was my cure! Following my BIG HE coma in June 2009, my brother became quickly educated, but I did not really comprehend the seriousness of everything. I know some people figured I had just given up, as I found it difficulty to walk, eat, carry on a conversation and basically just live. I now recognize that the disease and particularly HE robbed me of almost two years of energy, cognitive reasoning and memories. Prior to my HE coma, resulting in two days on my bathroom floor, I didn’t have the where with all to do anything, but the most rudimentary research on NASH. In the past month, I have learned more, just by reading people’s comments and following links. I’m not sure if knowing would have made a difference in what was happening, but I don’t think I would have become so depressed thinking I wasn’t trying hard enough or that the confusion was permanent. Also, reading other people’s comments has triggered some memories, which I am thankful for. I am so happy that I stumbled upon this and the other groups. Perhaps, doctors should inform their patients of these groups, so that people can prepare themselves as best as possible, for what may lay ahead.
Denise Miller-Powers When I found out just a couple of weeks ago, I felt to overwhelmed and afraid. So I thought well lets just see if there is some one on FB. I found this group and I am so glad. It has helped me to know what to ask, what to look for in some signs. How to eat and most of all the great support from people. At one time we were strangers to one another and are now a family struggling through liver disease together.
Terri Stone Bordelon I came here in April 2013 suggest by a friend. I was so alone, my family thought because I was trying to find information on the Internet I was adopting all my symptoms from that. Even my dr would tell me to stay off the Internet. Everyone was mad because I was researching every symptom I could think of, because my doctor told me absolutely nothing. 
When I found this place and I got such warm greetings and most of all understanding, I cried like a baby. I kept on fighting and researching everything and learning from you guys. I got a diagnosis a couple of weeks later. This group has been a comfort zone and my strength! Thanks to everyone here! OXOXOXXO
Connie Kaye In 2011 when I was diagnosed I was so lost. The docs told me what I had but they were so vague as to what to do. Lose weight and exercise. Ok. How do I do that? There was so much conflicting information on the internet and I felt utterly alone. I floundered around and didn’t get anywhere. My family didn’t understand. They still think I am just a hypochondriac. Maybe I am. But there is good reason to obssessively worry about one’s health when you have the possibility of a transplant at some point in your future hanging over your head. Finding this group more than a year ago literally saved me. Support, information, and friendship helped me develop a plan and gave me the motivation to stick with it. I honestly don’t want to think about where I would be today if it were not for this group. I love youMichelle Clermont, and all the friends I have made here!
Cheryl Lynn First and foremost, sadly I know I am one of many…too many. This group lends support to each member and education is added daily. This is a constantly evolving disease. Every day we learn something new it seems. Some days I am ok dealing with this and others get pretty down so its good to have a group to sound off in. Thank you!
Suzy Freeman I find this group very comforting. There is a great deal of support and patience with we newbies to the group. I feel that I can come here and not only learn but I could vent if I feel the need. It’s nice to “be around” people who don’t think that you’re being a whiner. And, I really do appreciate the knowledge that I’m finding. So many people aren’t getting information from their doctors. Sadly, I don’t think a lot of doctors are educated about NAFLD/NASH.

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!

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/

Marina’s Story – 14 Year old NAFLD patient

I met and started talking to Darlene who is Marina’s grandmother after she found my blogs about my daughter Megan. I have asked her to share the story of her grand daughter Marina.

It was Nov 1. 2012. Marina woke up for school and said her stomach hurt her. She generally never gets up at 5 am and for her to wake me up that early, I knew it must hurt her very badly because she is not a complainer.
She showed me where it hurt and it was like the top right side of her abdomen. She started getting ready for school and she was still in a lot of pain..so much so that I took her to the urgent care clinic instead of waiting to call her family doctor’s office. At the clinic ,they took Marina right back and drew blood, after examining her and with her being in so much pain, they reviewed the blood work wnich showed her (* white blood count was way off) they actually called an ambulance to transport her to Children’s Hospital.

When we got to the hospital…they hooked up an IV…started drawing blood and she was in so much pain she was crying. They did a CT scan and a Sonogram and took her right to the ICU. Her blood pressure sky rocketed..her blood count was way off…and she couldn’t stop crying about the pain. I was trying to act calm on the outside to keep Marina calm, but I was so worried …thinking…let this be her appendix so it will be solved quickly!

That would have been to good to be true. They call in the Gastroentologist and we were told the scan results were in and she had pancreaticitis. Marina just had to stay for a few days in the hospital …keeping a good eye on her in the ICU. No food to give her pancreas a rest with just an IV and lots of pain medication. So, I could breath again… she stopped crying cause the pain medications were working.They brought a portable toilet for her to pee in because she was hooked up to monitors.She was dealing with nausea but didn’t throw up…her blood pressure was high but they said it was due to the pain. To me, she looked so uncomfortable from the pain the whole thing,then she goes pee and what the heck her urine was brown like coffee. I almost passed out but I am still acting calm on the outside..she was groggy and I calmly asked the nurse why is her urine that color? Oh that’s ok, its just that her pancreas is inflamed and it needs to rest. Ok they are the medical experts… so for the next 24 hrs..she continued to feel nausea she was still getting the iv so she could let her pancreas rest, still urinating brown ,blood pressure high but a little lower with drugs,she did not sleep much and I didn’t sleep at all.

So 24 hrs go by and the doctors came in to make their rounds. I asked all kinds of questions…like what caused this what can be done why is her blood pressure so high…why is her urine so brown…they answered all my questions and said her pancreas got infected…they don’t know how…these things happen… no med for it just no food to rest it and the pee is brown because the pancreas and liver work together and the red blood cells are coming out in her urine because the liver is not working correctly because of the pancreas being swollen…its fine.

So two more days went by and she still was on pain medications but it was hurting less everyday…her blood pressure was returning to normal and her pee was a light brown….so they moved her to a regular room and had her start in liquids… they gave her soda POP…with sugar in it…coke, pepsi,ginger ale, they gave her pudding, ice cream, jello and these are medically trained doctors?. So I not knowing they were poisoning her liver, I was so happy Marina was holding it down. So after a day of sugar galore, her face started turning red,then purplish. Again I was calm on the outside falling apart on the inside. I Go and tell the nurse and they see her blood pressure rocket, her pain was coming back. They rush her back to the ICU. What’ going on?? I go to an empty room to call my daughter long distance to tell her help!. I was so weak inside my daughter (marinas aunt) and my son in law and my daughters best friend get on their computers they are searching reading, looking, talking, trying to save Marina.

I am sitting in marinas ICU room when a nurse…now this is extremely important to remember..THIS NURSE who was taking care of marina that shift…commented to me…who by the way NOT ONE DR. OR SPECIALIST SAID A WORD ABOUT to me…her liver enzymes are so high. So I freak out inside what? her liver enzymes are so high I am thinking no doctor or specialist said that to me!!! As far as they were concerned it was all only about her pancreas So now back home they start thinking maybe its not her pancreas maybe her liver is causing her pancreas to be sick!

Now keep that comment from my daughter’s friend in your mind along with what the nurse said about marinas enzymes
So I see my precious grand daughter is getting so sick again after she started getting better!

I go to the room where marina can’t hear the desperation in my voice and tell my daughter listen to this a nurse just said to me wow her liver enzymes are so high. I said why would she be concerned about that,all along the doctors and other nurses were saying to me…no its her pancreas, the other organs are just helping with her pancreas. So my daughter says mom let me talk to her doctor. And I took my phone and went and found Marina’s doctor and told her to please explain to my daughter about marinas health… 20 min the doctor hands me back the phone and my daughter says to me MOM..WHY ARE YOU TELLING US COMMENTS MADE BY A NURSE…GETTING EVERYONE WORRIED THAT MARINAS SO SICK..HER DOCTOR SAID HER LIVER IS FINE she just needs to rest her pancreas everything is fine!

so I am numb am half happy, half thinking no she is back in the ICU, I am in a mind set of total confusion. I’m thinking about what the nurse said and I have marinas mom stay with her and I went to a computer, typed in liver and Fructose in Google searched fructose, sugar, high fructose corn syrup, every thing I typed in about liver..dark urine pain. I start seeing all this about children…fructose ,liver, dark urine and I’m like what??. So I send all these links to to my family. My son-in-law said get Marina out of that hospital something is not right!

marina was so sick when she came here they didn’t put anything in her body meaning no sugar because they wanted her pancreas to rest and it was working her blood pressure went down her blood count was getting better her urine was lightening with every pee. Then since she was getting better they took her out of ICU and gave her all liquids and soft food high fructose pudding high sugar jello, sugar in chocolate milk The comment stood out in my mind….maybe its her liver that’s making her pancreas sick I said I am taking her home…The doctors said you can’t, no said marinas mom! I said OH YES I CAN I AM HER LEGAL GUARDIAN I took her home and put her on a strict no sugar diet and my family and I read everything about fructose sugar liver and by the next week when they did blood work…wow….was her body getting better not much pain at all pee turning yellow not brown no nausea, sleeping good Since then we have been very on top of marina walking for exercise..every day she has to walk… he set her up with drinking watered down cider vinegar every other day….and on the other days she drinks a spice with water… turmeric. Every label is now read for hidden ways of saying sugar!

Marina is an honor role student and is doing very well since we took her health into our own hands! Doctors are not taught enough about this disease and they don’t look for it and assume its other things. We blindly trust doctors with our lives and sometimes you just need to listen to common sense. If the sugar brought all symptoms back then there is something to consider getting rid of for your body!

This disease is hitting kids as young as 2.

Do not ignore it, if 1 in 3 north Americans has liver disease someone you love is dealing with it before it starts showing nasty symptoms like this.

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