Our Battle with PLEVA or Mucha-Habberman's disease...Finally found a cure!

  On March 11, 2011, my son (10 years old) had a punch biopsy on a lesion that he had on his leg. Earlier (in February) this year I had noticed him getting these lesions all over his torso, arms, and upper legs only. He didn't complain much as they didn't itch. I of course panicked and thought they were bed bug bites.  I felt so bad and thought that I should have vacuumed his mattress more often.     Of course, immediately I thoroughly cleaned his room, mattress, and bed sheets, wrapped his mattress with plastic, and disinfected his whole room.  The weird thing is that his sister had no lesions; they share a room and sleep in bunk beds.  I still went crazy cleaning every toy and every corner of the whole house. But the lesions kept appearing. So we went from Dr. to Dr. in order to find out what this was.  I did my research on these pediatricians and thought they had the experience in order to know what this was.  But they were all dumbfounded until finally we got referred t

OK, so it took me all day Sunday to research what I will feed my family.  Man, was this tough!! As I went through the millions of blogs and forums on "GLUTEN-DAIRY-SUGAR FREE foods" I was overwhelmed with information.         By the way, let me rewind a bit to last Friday when I took my son to a holistic Dr. from Loma Linda University that I found;  his name is  Dr. Katiraei  and he has given me hope in curing my son of PLEVA.  The Dr. was also stumped with this disease and he told me that he had to study it since he never heard about it until now.  He informed me that from his research he believes that it is a dysfunction of my son's T-cells which are linked to the immune system. So we are to follow the COMPREHENSIVE ELIMINATION DIET which is "NO EGGS- NO DAIRY-NO NUTS- NO SOY- NO SUGAR - NO WHEAT - NO OILS- AND NO COLD CUTS.  Of course, he prescribed my son supplements that include vitamins, minerals, zinc, probiotics, and omega 3-6-9 oils.     I don't ev

The change has been good, being that the kids love the food makes this a little easier.   Woke up an hour earlier than usual again in order to start cooking.  This is no problem as long as I go to sleep early as well.                                              DAY #2 MENU BREAKFAST - 1- Smoothie: Organic Rice Milk, Raw almonds, blackberries, and some agave nectar 2-  Fresh Papaya 3 - And brown rice with hummus.   LUNCH: Grilled Mahi-Mahi, brown rice with zucchini, green salsa, and celery with hummus.  DINNER: Organic Brown rice pasta with chickpeas, broccoli, and onion.  some carrots with homemade humus . * NOTE:  About 90% of what I cook is organic.  

I cried to myself to sleep last night.  My son has even more lesions now.  It gets to me that all this effort might not even work!  Why can't it be me that has this uncomfortable disease?  What is even worse is that he has some new lesions going up his neck.  I just can't imagine him getting them all over his face.  Can't stop praying for that to not happen...         He is such a great sport about this.  He itches a lot but stays strong and gives me hope by saying " Thank you mom for taking care of me and I know this will take my volcanoes away"  That is what he calls them  - his little volcanoes...We will continue with the same regimen until the 3 weeks and hopefully, this will go away!                                                            DAY # 3 Menu BREAKFAST:  1-  Brown rice hot cereal with bananas and blackberries - green juice (parsnip, carrot, celery, and his mediclear powder) LUNCH: 1- Brown rice rotelle with chicken, spinach, onion, a

     Feel less overwhelmed today, since I have researched some foods that are easy to prepare.  Like the puffed rice cereal is a time saver.  It is bland but I add bananas and Agave nectar to it and the kids love it.  Also today we tried sun exposure since there have been some people that find relief by exposing themselves to UV light.  He wore only shorts and stood in the sun while reading.  10 minutes front and 10 minutes back.  Come on Sun work your magic! Day #4 Menu  BREAKFAST:  1 - Puffed rice, rice milk, banana, and agave nectar.    LUNCH: 1 - Organic ground chicken with lightly sauteed onion and cabbage w/brown rice. DINNER: 1- Baby bok choy with chicken in a Guajillo pepper sauce.

  Hello to all. Today is Friday and we are having a fun day today.  My whole family feels great! We wake up filled with energy and the grogginess is gone!  My husband suffers from an occasional migraine, well this week he suffered no migraines at all! Yay!! We can definitely feel some improvement, but my son is having more lesions show up! :(  Well we are almost done with week one, so let's just hope they will subside soon.                                            Day 5 MENU Breakfast: Hot Rice and shine cereal with bananas and almonds. Lunch:  Salad with pinto beans and brown rice. Dinner:  Brown rice pasta with broccoli, red peppers, and yellow peppers.  Lentil Soup.

   We visited a park today,  rode our bikes and flew kites. We had such a lovely time and before we left I asked my son to take off his shirt and run around so that he can get direct sunlight on his lesions.  And for the very first time, he seemed concerned about what people might say about his spots.  It broke my heart that he would feel self-conscious.  I told him that nobody would say anything to him and besides that, if they did he should inform them about what his disease is and that there was no reason for him to feel ashamed at all.  We have researched this disease together, so he knows enough about it. I keep encouraging like always to do his best every day and to not think that much about the disease he has.  So other than the PLEVA he is a very healthy kid.           Every night before he goes to sleep I check his body for any changes. And I was so sad to see a lot of new lesions.  Maybe the sun made it worse for him!! :'(  I'm so sad.                           

     OK so after like a week of not posting anything due to the fact that I felt so hopeless.  My son keeps getting more and more lesions.  What do I do?  3 days ago his lesions seemed dark and fading away we were so happy.  But yesterday he got more again.  They come and go and follow the pattern of new ones replacing the old faded ones - 2 to 1.  So he is filling up with spots.  We are still continuing the elimination diet, and the supplements, plus now I am putting 100% pure Australian Tea Tree Oil mixed with Neem Oil on his lesions.  Let's just keep our fingers crossed and hope this helps him.              By the way, I just wanted to point out how hard it is to figure out how to keep our Easter traditions the same with this elimination diet  I guess it will be plastic eggs this Easter and no sweets! My kids are not liking the idea. Oh well, 2 more weeks to go! Oh yeah, I forgot to post that we have decided to extend this diet from 3 weeks to 4.  The Dr. did say 3-4 weeks.

    I'm so excited!! My son's PLEVA is looking better every day.  I took these pictures this morning.   His lesions are dried and fading,  and his back is almost clear.  His legs still have some bright red lesions so I will continue with the diet and the oils .   SOMETHING IS WORKING!!! !  Thank God!   By the way, EASTER was wonderful.  Other than the fact that I got a horrible cough and felt sick, we enjoyed so much having family save the day on Saturday and on Sunday.  My aunt invited us to her home on Saturday and we had a wonderful Easter day.   She even made all of the food safe for my son to eat.  Thank you so much for that Aunt!  On Sunday I could barely talk since my throat hurt so much, and my cough got worse.  Our plans were ruined because of me being sick and plus it was raining all morning, so the park was out of the question.  Well, my Mom came to the rescue and made the most delicious and fun Easter party for my family! I love her!  This was our dinner

Day 16:  I can't help but feel so scared because, during my daily studying of this disease, I found some research regarding Mucha-Habermann's disease and how it has a mortality rate of 20%... Oh, dear God! I need faith to come to me. I need to have faith and know that my son's PLEVA  will not reach that state.  What else can I do? One thing is for sure I'm starting to measure his lesions.  Please, if you can, pray so that this never happens to my son or to anyone out there.   The findings come from the National Institute of Health - Office of rare disease research.  They state that PLEVA is the initial state of  Febrile ulceronecrotic Mucha-Habermann disease (FUMHD).  When the lesions grow larger than 2-5mm (PLEVA) they become large destructive ulcers that make you lose your skin.  How awful! I cannot imagine this getting that bad!  It states that all reported deaths were in adults and children tend to have a better prognosis -  WHAT does this mean??? I am calling

                      I started this blog with the whole purpose of helping others by documenting our battle with PLEVA and hopefully finding a cure for my son.  Well, we have cured him completely with the help of a healthy diet and supplements that strengthened his immune system.  I ask all of you out there with Mucha-Habberman's disease or PLEVA to try this and hopefully, this also works for you. Keep in mind I am just a concerned mother and I am not a Dr. so you might want to consult with your Dr. and if you can find a Holistic Dr. all the better.                   Since my last entry on this blog things has changed for the better.  My son's PLEVA has been banished.  It has been since last Thursday - April 28, that we noticed he had no more new lesions.  The last day of our Elimination Diet was Friday - April 29.  We started integrating eggs into our diet, so Saturday and Sunday we ate eggs for breakfast and lunch or dinner.  Then we monitored for any changes on the third

It has been more than a week since my son's PLEVA has been banished and I am happy to report no new lesions!!   AWESOME!!

        Hello to all! I am back blogging, yay! Finally (thanks to my brother who gave me a brand new computer) I can connect and inform you all that my son still is PLEVA free!!  We do not follow the allergy-free diet anymore, now we just eat a well balanced diet.  I incorporate vegetables, fruit, nuts, and only yogurt for dairy.  We do not drink cow's milk only rice milk.  He occasionally enjoys some pizza , soda or candy, but it is limited to 1 or 2 times a week.  That is how we have been eating since July when I stopped doing the allergy-free diet.  My son does not take any of the supplements he used to, only natural organic vitamins and some fish oil;  the whole family takes them as well.  He has not had any recurrence of the lesions or any other symptom.     I completely understand the frustration of parents when you see your child with this disease and feel you can't do anything to alleviate it.  But you can!!! Change the diet and go natural and organic.  It is the

~RECIPE BOOK~       I will start by letting you all know that I am  not  a professional chef and all of my recipes come from my experience with cooking. I have been cooking for my family and sometimes catering for the last 20 years.  I make up my own recipes at times and follow my natural and cultural upbringing cuisine which is Mexican.         Once I found out my son had PLEVA and his pediatrician or dermatologist gave me no answer to what it was or how to cure him. I  found a Holistic Dr. who saved him by giving me a list of supplements he should take and asking us to follow an allergy-free diet.  The Holistic Dr. gave me a list of what not to eat. So after spending an entire day preparing for it, we decided to do this as a whole family effort (That way I only cooked one meal each time).  I started by emptying my pantry into a box and donating the processed foods (like cookies, cereal, junk food, etc.) to a shelter. Then I made up a menu from the foods we were allowed.

ALWAYS USE ORGANIC EVERYTHING!!!!! *During this time of healing for my son I even bought organic natural shampoo, body soap, and detergent* *CHANGE COOKING OIL TO AVOCADO OIL or COCONUT OIL :  Ok, I swear by this oil to cook my food. I used to use Olive oil to cook. But through research, I discovered that Olive oil has a low smoke point and it actually burns before it cooks your food so it adds a level of toxicity to your food. Other than that it has benefits to your health like antioxidants and reducing bad cholesterol and raises the good ones.   * I still use Olive Oil but only after food is cooked do I add it to salads or veggies as a dressing. * MAKE SURE YOU ALWAYS GET COLD-PRESSED OILS.

6 or 8 Tomatoes (for Red Salsa) or Green tomatillos (for Green Salsa) 2 Garlic Cloves 1 Fresh raw Jalapeño peppers for mild salsa  or  2 - 3 for hot salsa  Sea salt to taste 1/2 cup of minced Cilantro 1/2 cup of minced Onion Put tomatoes or tomatillos in a pot with enough water to cover them. Cook until they boil on high heat, then change the heat to medium and simmer for about 10 min. until they are soft.  Then using a blender or food processor CAREFULLY blend the tomatillos, Garlic, Jalapeños and Salt.  When finished pour into serving bowl and then fold in the cilantro and Onion. *TIP:  Roasting method  Cut in half and place cut side down on a foil-lined baking sheet. Place under a broiler for about 5-7 minutes to lightly blacken the skin. Or place on a griddle and roast the tomatoes or tomatillos and the Garlic as well. Turn each one on every side in order to get the skin lightly blackened.

1 cup Organic Brown Rice 2 cups of water 1 garlic clove Sea salt to taste Add all ingredients to a rice cooker and set to cook.  Enjoy!

1Cup of Brown Rice 2 Cups of Water 1 large Garlic (minced) 1/2 cup of diced onion 1/2 cup of diced tomatoes 1/2 tbsp of Grape seed oil Sea salt to taste Saute uncooked rice with onion and garlic until golden brown and onion is translucent. Add tomatoes and water. Bring to boil and then simmer on low heat and cover. Cook for 20 - 25 minutes. Fluff with a fork. Enjoy! 

3 Cups of Beans ( any kind) 8 Cups of Water Sea Salt to Taste 1 big Garlic Clove.  Put all ingredients in Crock-Pot and cook for about 5 hours on high or until they are tender and just right! :)

Quinoa Salad with apples and almonds * USE ORGANIC FOODS 1 cup quinoa, rinsed 2 cups water 2 tablespoons raw agave nectar 1/4 cup lemon juice 1/2 teaspoon sea salt 3 tablespoons olive oil 1 cup peeled, diced tart apple, such as Granny Smith 1 cup finely chopped celery 1/3 cup golden raisins 1/3 cup finely chopped parsley 1/2 cup coarsely chopped raw almonds, toasted Coarse salt and pepper Instructions In a medium-size saucepan, combine the quinoa and water, then bring them to a boil. Reduce the heat and simmer, covered, until the quinoa is tender and the water is absorbed, about 15 minutes. Transfer the quinoa to a large bowl, stir, and let it cool completely. In a small bowl, whisk together the agave nectar, lemon juice, and salt. Gradually whisk in the oil until blended. Add the apple, celery, raisins, parsley, and almonds to the quinoa and toss the ingredients well. Add the dressing and toss once more to coat