Well Isn't That Interesting?

We have been on a very strict diet and were told no foods that he was sensitive or allergic to. In fact, we weren't even suppose to give him foods that he wasn't allergic or sensitive to. Pretty much all he could have was meat, veggies, and strawberries. We were told he could have bacon, sausage, hot dogs, and lunch meats. Of course we cooked chicken and other meats for dinner, but those weren't so easy to prepare for breakfast and lunches. Throw in a couple of hotdogs, peas, carrots, and strawberries in his lunch box and call it good.

Well....today we got some very interesting information in the mail. It was the official results from his allergy test, which we already knew about, but also a food plan for him. It's a list of foods he can have each day. There are four different days and we are to rotate them. It gives several different options of different foods. It includes fruits, other than strawberries, and even beans and rice. Never would I have thought I would be so happy to feed my kid beans and rice! It's something different!

Another thing that was very interesting was that it had a list of foods to avoid. On that list it included BACON, SAUSAGE, and LUNCH MEAT!!!! Sigh...... no wonder he isn't getting better. It's because they can have trace amounts of gluten and when you are dealing with a severe case of eczema, like we are, any amount can set him off big time.

Here's what really blew my mind. It makes perfect sense though once I read it. Food sensitivities can occur as a result of repetitive eating. When you have a leaky gut the undigested foods you eat can leak out and cause your immune system to go into overdrive. It starts attacking those foods and creating antibodies towards them. The more you eat them the more the body attacks them and causes the sensitivities, which can trigger the eczema flair ups in Jacob. So what you have to do is rotate the foods. In his case, if he eats an orange on day 1 he can't have it again for 4 days. So in a nutshell that's why Jacob isn't healing. Even though we haven't been giving him the foods he is sensitive or allergic to,  we have been giving him the same foods for 2 weeks straight. This has allowed his body to make antibodies towards those foods since he eats them so much. Foods that weren't a problem before we started this, probably are now since he eats them day in and day out. They are now triggering his eczema flair ups. Now we have a list of foods that he can have that goes beyond meat, veggies, and strawberries. He can even have white potatoes and popcorn! Sounds so simple but those will be special treats for him.

Just a vent: This report was prepared on April 8. Why am I just now getting it April 26? The logical side of me knows how the system works and sometimes it takes time.  However, this valuable information could have prevented three doctor appointments and more flare ups. Why did it take almost 3 weeks for me to receive this? I know that it is out of my control and I am grateful we have more answers, but the mama bear in me can't help fell discouraged and upset that it took so long. However, I am relieved that we know more about what is going on and now can move forward.

I pray that in two weeks we will see significant improvement. Until then, thank you for all of your continued prayers!

Update

We have taken out all dairy, eggs, and all of his other sensitivities. One thing I have noticed since we have taken everything out is he is hungry ALL the time. He can eat two pieces of chicken, a cup of broccoli, strawberries and still want more! That's a lot for an almost 4 year old. I have to cut him off. He gets breakfast, morning snack, lunch, afternoon snack, and dinner. If I would let him he would eat all day. His skin has good days and bad days. Today is a bad day. I say it's a "bad" day. It's actually a lot better then it has been in a long time. However, just a few days ago it looked better than what the photo shows. His body is trying to get rid of all the toxins that have been making him sick and the way it escapes for Jacob is through his skin. One really positive thing is that the doctors think by the end of the summer he will no longer have any sensitivities and possibly no allergies. When there is a gut issue the body decides how it is going to react. For some kiddos it's through eczema. Others it's ADHD or seasonal allergies. When you have a gut issue the lining thins out and undigested food and other things escape into the body. The immune system goes into overdrive and causes things like eczema.  These are pics from tonight.

One of the biggest things we have noticed is Jacob's behavior since we took him off all of his foods he is sensitive to or allergic to. He is so HAPPY ALL THE TIME! It's amazing. Before he was WHINEY ALL  MOST OF THE TIME.  I thought I was going to get a nervous tick from how whiney he was. Of course it's because he feels so much better. Probably better than he has in a long time. He is also more focused.  I have had ADHD for quite some time and was scared he would have it as well. I realize now it's because of the garbage I have been eating. I have taken myself off of all sodas and breads. I am working on taking out all chips, crackers, and other processed foods. It is a little harder when you are 30. I have a lot of bad habits to break and it is definitely a process. I now understand that so many things that we are diagnosed with come from the gut. Heal the gut, heal the disease. I will definitely go into more detail about this but for now I am beat! We had state testing for our kids today and it's always a draining experience. Below is a picture from this weekend. I am definitely blessed.

I had to throw this one in. The boys did NOT like the "man eating chick"

Results Are In

Jacob is allergic to Eggs! No wonder he isn't getting better. We give him 2 eggs every morning for breakfast and use eggs all the time when I cook for him. The eggs were the most severe.

Here is what he is sensitive to and have to stay away from for a while.

Almonds!- That includes almond flour and almond butters. Things that we give him all the time! Today I sent him with almond butter cookies and almond flour biscuts that both have egg in them.
Bananas
Apples
Bran
Milk
Cashew
Mustard
Rye
Wheat
Gluten
Tomato
Walnut
Lemon
Grapefruit
Garlic
Egg Plant
Yeast- bakers and brewers

We still can't give him any new fruits, except strawberries, even ones he isn't sensitive too. They still have too much sugar and can cause his eczema to blow up.

He still can't have any beans, peanuts, or grains, even the ones he isn't sensitive to. Again they process into sugar to quickly which can blow up his eczema.

When Jacob is well we will be able to reintroduce the foods he is sensitive too but very slowly. It could be months before we are able to do this. I am very happy that we know what is causing this, but our food is even more limited. It is literally meats, veggies, and strawberries. That is it, for now. At least we now know what we can do to help our little guy get better. Hopefully we will start seeing real results now!

2 steps forward, 100 steps back

Just as I think that things are starting to look up, something sets off his skin! This is from tonight. It looks worse than when we first started.

What gives??? We are so ready for some answers. I know we are on the right track but there is something that is doing this. I don't know what it is and I am so confused. We are doing everything that we are suppose to. We are taking all the meds and supplements. There has got to be something more to this. Both David and I are about to go crazy waiting for the test results to come back. We know it is going to reveal answers that we have been waiting on for 3.5 years. We appreciate everyone's prayers and support. Please keep it coming. I feel like I am on the brink of a nervous breakdown. I am so exhausted not just physically but mentally as well. Working full time, cooking everything from scratch, making sure he gets his 11, yes 11 pills a day plus his oral med and supplements, being woken up several times at night from a 3 year old in tears because he is in so much pain, hearing my son cry out whenever I touch his skin, him begging me for new skin, having doctors tell me it's the worse case they've seen and being perplexed. and  just taking care of everything else life throws at you is about to make me break. The only thing that is keeping me going are the prayers I cry out and the prayers you say on our behalf. I feel like if I knew what was causing all of this then I would have some peace. At least I know where to go from here. My biggest fear is the tests coming back saying he isn't allergic to anything or sensitive to anything and not knowing what to do for him. This is NOT normal. This is not just dry skin. This is not just eczema. The eczema is a symptom. There is something much more going on here and I don't know how much longer I can wait for answers. 3.5 years of this roller coaster is enough and I am ready to get off the ride.

Keep Fighting

I've always been known as a "fighter". No, I don't mean I always get in fist fights or constant arguments. It's because I always fight to overcome what ever is thrown my way. My earliest memory of this was when I was in 1st grade. All of the kids were showing their report cards to our bus driver. She was giving out praises to all of the kids and how great their grades were. I stood in line and waited for my turn. She looked at mine and crushed me. She said my reading grade wasn't good at all and that I shouldn't have a grade like that. That makes sense because I didn't care for reading. It's not that I didn't have the basic foundational reading skills. It just wasn't important to me. I don't remember exactly what the grade was but apparently it was bad. That very day I went and grabbed my twin sister's books, the kind with large letters and only a few words per page, and began putting those foundational reading skills to work. I read her books and the next day went to the library and checked out more. It was no time that I was reading.

This is not uncommon for me. If you tell me I can't do something it pushes me to do it even more. I don't like to be told it's impossible. Even things I can't control. Like when we were told we couldn't get pregnant. Ever. It was one of the hardest things for me to hear. It crushed my entire world. My motto was "If you work hard enough you can make anything happen." I was very humbled by that experience and had to learn to fully rely on God. There was no way I could fix our infertility problems. There was absolutely nothing I could do. I learned to trust God with everything I had and guess what? We have two beautiful little boys. With all of this said, I feel like I am in that same sort of situation. I have done everything I know to do with Jacob. I feel like we are on the right track but still haven't quite figured out the  real reason this is going on. I do feel like it is milk but maybe even something more that is causing this. We have been off all milk products for almost 2 weeks. His skin will start to look really good but then it flares up big time. That tells me it is something besides just milk. I am anxious to get our test results back. It will show any allergies and sensitivities. We should be getting those back next week. I am broken and exhausted. I have done everything I can and have worked so hard. Why are we not seeing the results I expected. That's when I realized I have to give this up entirely to God. Just like I did when we were told we couldn't get pregnant. I have to Pray for wisdom on what to do and trust that He is going to take care of our little boy. We are so close to getting this figured out but I still feel like there is a piece of the puzzle missing. Not having complete control of a situation is tough for me. Ask anyone who knows me. Anyone. They will shake their head yes and agree wholeheartedly.

It is hard see your little boy hurting. It is hard to see other parents look at him like he has a horrible disease like leoparsy. It's hard to hear someone minimize it and act like you are crazy. To tell you it's just because "it's dry in West Texas". Really lady? It's hard to hear your 3 year old say "I just want to like my skin. I don't like it because it hurts me." It's hard to see your  little guy wake you up at 3 am crying because he hurts so bad. But you know what doesn't hurt? Hearing that one morning he walked up to a mom, who he knew was bring cupcakes later that afternoon,"My mom made me special cookies so I'll be ok." It was completely on his own. That makes a mom proud. That is pretty spectacular for a 3 year old if you ask me. You know what else doesn't make me sad? That we are getting this opportunity to teach Jacob that it is ok to be different. That when he tells me he doesn't want kids making fun of him, we can teach him how to be strong and to teach him that it truly doesn't matter what other people think. I am also not sad because the family as a whole is becoming healthier. We aren't able to grab quick dinners from fast food because there is nothing Jacob can have. I am forced to make breakfast every morning because grabbing a pop tart would send his skin into a complete frenzy. I am also not sad because we are able to teach him lots of life lessons right now that is going to make him stronger and confident in himself. We go through trials to make us stronger. If you choose to persevere and not give up you will come out a better person and can help others learn from what you have been through.

As I said before, I am a fighter and I will continue to fight through this. I will continue to fight for my kid. As a family, we will make it through this exhausting time and will be stronger for it. Please continue to pray for sweet Jacob. He is a trooper and I am so proud of him.

Frustration and Clarity

I had a mini meltdown today. Yesterday I posted that it gets worse before it gets better. Jacob's eczema was starting to look worse but I thought it was because the candida was dying off. However, this morning his skin looked even worse and was not dried out as before. In fact, it looked like we hadn't done anything at all to help fix it. It looks like day 1, if not worse. I went over and over what it could be. I thought maybe it was the carrots since it was the only thing new that he started eating this week. But that didn't make much sense because he has had carrots before and never had a reaction, especially like this.

Come to find out he was given lots of animal crackers and goldfish Wednesday night at church. Sometimes the reactions do not start until a couple of days later.  In his teachers defense they didn't know. We hadn't thought to tell them. I'm not sure why either. The kids are with the adults for about 20 minutes in the auditorium and then they go by themselves to class. I'm sure if I had walked him to class I would have thought about hit.  It was just a case of miscommunication.

 Look at the picture above. What kid starts to look like that because of some extra animal crackers? I am frustrated that we still don't have blood results back. I am frustrated because I had to run around in circles for 3 1/2 years trying to find out how to help my kid. I am frustrated with birthday parties. I know that is stupid but if I have to explain one more time why my kid can't have a cupcake or ice cream, even the "organic" kind I am going to have a break down. I know it's so stupid.

  That's when I came to the realization. We put way too much emphasis on food. Why does the center of every celebration have to revolve around food. Not just birthday parties, but any kind of celebration. Food is suppose to be fuel for our bodies. If eating the correct food, it give us natural ways for our bodies to heal ourselves. So Jacob can't have a cupcake, so what?! Yes it is hard for a 3 years old to understand this. Yes it is hard as his mom to see him disappointed and feel singled out. Yes you want to just protect your babies and you don't want them to feel disappointment or sadness. You know what though? That's life. David, my husband and Jacob's dad, said that this is a good teaching moment. Jacob is going to have to learn that life isn't always fair. That disappointments and being "different" is hard. But it's not the end of the world. Do you want your 3 year old to have to learn this? No. But when is a good time for them to learn this? We have to just keep pushing on and use this as a teaching moment. Now does this mean I will never let Jacob have a cupcake? No. Does it mean I will never let him have treats? No. When his skin gets better and we figure out what is causing all of his reactions and get them under control he will be able to have the occasional treat. However, it looks like we are in this for the long haul. We can either let this be a  teaching moment for the whole family or we can let it stress us out and get us down. I rather stick with it being a teaching moment.

"Pray continually". 1 Thessalonians 5:17

It Gets Worse Before it Gets Better

Please continue to pray. Jacob is telling me daily he wants new skin. I have had parents pull their kids hand away from Jacob when they saw his skin, thinking he had some contagious disease. He tells me he doesn't want other kids to make fun of him. He won't even put his hand in the soccer team huddle because he is scared he going to get made fun of. That shouldn't even be something a 3 year old should be concerned about. Thank you for all of your prayers and support.


After 3 days I posted about how his legs and arms were looking much better. The skin was drying out. After 6 days the redness was actually starting to get less and less. Today is day 7 and his legs and arms have gotten worse. The doctor warned us about this and that's why I am not discouraged. Below are some pictures of his arms and legs from today.

Leg

Arm

Close up of his leg

The  reason it gets worse before it gets better is because all of the candida and other toxins need a place to escape. In Jacob's case it is the skin. I will say though that Jacob's attitude has improved greatly. He isn't whiney and moody. He is so happy and playful, even with his skin getting worse. I believe his attitude is changing because he is starting to feel better in the inside. He hasn't complained in the last 3 days that his tummy hurts. This was a several times a day thing, even before we started this cleanse. I imagine that his skin will start to improve again in the next few days and from there it is only going to continue to get better.

Some people have asked me what kind of supplements we have him on. Please note that we saw a doctor that told us what to give Jacob based off his needs. He said himself that he was being more aggressive with Jacob. I imagine because Jacob may have a "leaky gut". The test results will give us a better idea if he does or not. Basically from what I took away from our conversation with the doctor, was that a leaky gut is when the lining becomes thin and has tears that allow things to enter the body that shouldn't be there and that's why he is having such bad reactions. The reason why someone gets a "leaky gut" is because if someone is allergic to a food the body creates antibodies. In Jacob's case they THINK it is the casein in milk, we will know for sure in a week. If the body continues to get that food it is allergic to it will not only create antibodies for the allergy but then it will start attacking other foods that the body may not have been necessarily allergic to. That's how you get food sensitivities/ The blood test Jacob had done will reveal any food sensitivities. If he is sensitive to 20-30 different foods then we are dealing with a leaky gut. If that's the case then we are in it for "the long haul". Which means we will have a lot harder time repairing the damage that has been done. From what I understand the food sensitivities can be remedied. You have to repair the gut and then very slowly reintroduce the foods that he is just sensitive to. However, if he has a leaky gut then that means there is a lot of damage that is not so easily repaired. I have read stories of people that it took 2 or more years to repair theirs. The doctor didn't even really want to talk about that possibility and thinks that treatment we are doing is going to work.

Below is a list of what we are doing for Jacob. 

* 1 teaspoon of coconut oil take orally

* 2 Borage Oil pills daily

* 4 fish oil pills daily

* Rotation of Probiotics

   - Day 1 VSL #3- 2 pills

   -Day 2- Garden of Life probiotic- 2 pills

   -Day 2- Floraboost- 1 scoop

* 1 teaspoon of fermented food daily

* 2.5 ml Nystatin- 4 times a day

In addition we give him coconut oil baths with oregano drops. We also use coconut oil or Vaseline as a lotion.

We also are not allowed to give him any sugar, not even fruits. No gluten or milk products either. Basically he is on a meat and veggie diet. However, I can make things from almond flour and have gotten pretty creative. I will post those recipes but I want to respect the people who have come up with the recipes and I am waiting on permission from them to post them. As soon as I have that permission I will get them on here. 

Again, this is for Jacob and the doctor is treating his case aggressively. Always check with your doctor before you start anything. :) 

Sensitivities- More harmful then you realize

My friend Jodi sent me the link to the article below today and I am so glad she did!

http://blogs.prevention.com/inspired-bites/2014/04/02/food-allergy-or-food-sensitivity-what-you-need-to-know/

The article explains the seriousness of food sensitivities and how many times are downplayed as "second class" compared to food allergies. I would try to explain everthing that is in this article, but it is best for you to read it for yourself so nothing is lost in translation.

 I have been asking myself and other doctors for quite some time now if kids can just be sensitive to foods and not neccessarily allergic to. Sensitivites that can still cause reactions after a certain food. That is why I wanted a blood test done to test for this. If nothing would show up on the prick test, surely a blood test would be more sensitive and catch something the prick test missed. Now in Jacob's case they think he has an allergy to the casein in milk but also other food sensitivities.  I think I may have figured out why I kept getting denied the blood test so much. The blood test that will reveal food sensitivities is not usually covered under insurnace.  The test itself is $285 and may be hard for families on a fixed income to come up with that. However, if it was going to show what was triggering Jacob's system we were going to do it. I think another reason why is because doctors are more worried about food allergies. I don't think many have a good knowledge on how food sensitivities can affect a person. Now please don't think I am talking badly about doctors. I am a teacher and have been for 9 years. I feel like I have a pretty good handle on how to teach students and get them where they need to be. But every year I am finding something I didn't know before. The same goes with any profession. There is so many things out there and the human body is so complicated it is impossible to know anything and everything about the human body.

     The doctor that Jacob is currently seeing for his eczema and working with us to figure out the root of the problem is Dr. Edwards. Below is the link to his website.
http://www.veritasmedical.com/

Below are two links to his videos explaning how he got started and what he does. They are long but worth your time!
https://www.youtube.com/watch?v=ThlEnSKwCHQ  - Video 1

https://www.youtube.com/watch?v=uGP8_U-JgWQ  - Video 2

I hope this information is helpful. As parents we are the best advocates for our kids. If a treatment doesn't work keep trying until you find something that does. It may be a long battle but don't give up!

Eczema is a hard thing to understand...

"Isn't Eczema just dry skin?" or "Can you just get special lotion or steroid cream and it will make it go away?"  I too thought that's all Eczema was. Slap some lotion or steroid cream on it and it will go away. A few weeks ago I had another mom say "Just think if it was something actually serious. Thankfully it's just eczema." I just nodded, kept my cool, and walked off. Jacob's case is much more then "just eczema". He has developed staph infection so many times I have lost count. He has deep open wounds that won't heal. He's had the same wounds on his ankles for 2 months. No matter what I do they just won't heal. It's because the staph infection he keeps getting doesn't allow for it to heal. We take all the preventative measures we can. We give bleach baths regular, have him wear pants, and try to put breathable barriers so he doesn't get bacteria in it.
Below are a few pictures to prove that we are not dealing with "dry skin".

 The least little thing will set a reaction into full force. We had tried everything that we can think of. Thankfully, he does not currently look like this. However, these kind of reactions happen about once every 2 months and lasts about a week. Recently it has been even more often. Even steroid cream won't help relieve his wounds.

These are Jacob's legs 3 days ago.

Here are his legs today

It's hard to see from this picture but his wounds are actually drying out! If will also notice, his ankle wounds are actually starting to heal. This hasn't happened in sometime. This is just 3 days in.  They still look very red, but the drying out of his wounds is huge! That means staph has less of an ideal environment to grow. It loves warm  and moist areas which is why he got it so often. 

The picture below is a current picture of his arm.

You can't see his wrist, but it looks just a great as the rest of his arm. Again, the wounds are drying out!

The picture below shows all of the medicines/supplements he is on. He takes it like a champ! 

He's also not allowed any fruits or anything with sugar. We have gotten pretty creative and he is doing pretty well so far. This will last 2 weeks. After that we should have the test results from his blood allergy/sensitivity test. We are praying that we will have some answers. Thank you for everyone who has been praying for us during this time. We feel your prayers. Also, thank you to those who have been with us the past 3 1/2 years and have seen the pain first hand that Jacob has been in. Your support has helped me keep my sanity during this time. It's hard when your baby is suffering and you can't figure out why. We feel confident we are on the right track!