Before and After

BEFORE: Here are Jacob's legs  and was considered  his "normal". When I look back at these pictures I immediately tear up. It hurts to know how much pain he was in and to think that  this was "normal".

AFTER: The pictures below is Jacob today. I forgot how beautiful his clear skin was because it had been so long since we saw this. I was worn and beaten down from trying everything we could, from fighting to be heard, and from hearing and seeing our little boy in constant pain. We prayed and asked God for wisdom and to show us what we were missing. I prayed too that God would heal him. He answered our prayers. Jacob is excited about his "new skin". He talks about how his skin isn't "bad" anymore. We are forever grateful for Jacob's "new skin". 

Praise God! We have made it!

Are you ready for it? Jacob has clear skin!!! That's right it is CLEAR!!  For the last 4 months we have thought that his flair ups were mostly food related. While that is the reason his eczema started in the first place, that's wasn't the only thing flaring him up. We had no clue he had severe topical eczema because he's been flared up so long and hasn't been clear long enough for us to notice. Since we were able to get him clear for a day or two we were able to start noticing the sudden flair ups and figuring out pretty quickly what was causing it. Below are some things that we noticed were causing his inflammation.

Cleaning Chemicals- This was the first thing we figured out was causing his inflammation. We changed all cleaning chemicals and even carry around peroxide wipes for when we are in public. I wipe down the toilet and sinks with these wipes. The back of his legs cleared up in just a few days after we did this.

Polyester- He has a severe allergy to polyester. We had his legs almost clear and then his legs flared up in less than 10 minutes after I put on his polyester shorts. He had whelps and severe inflammation. All of his bedding was made of polyester. Looking back I should have noticed this sooner. At night, Jacob is covered in vet wrap on his arms and legs so he wouldn't have a reaction to it. However, after nap he would get pretty red. He didn't have vet wrap on during naps. Why I didn't put two and two together I will never know. Hindsight is always 20/20. We even noticed that when he sits in his car seat he flares up. We are even looking into new couches because all they have polyester. That might be a while though because couches without polyester are EXPENSIVE! Until then he sits on towels when he sits on the couch.  When he sits on carpet I make him sit on a cotton towel. Polyester is pretty much in everything even in the church pew covers.  

GRASS-His grass allergy is awful. Jacob has never been one to sit in grass. I figured that it was because he hated the texture of it. On July 4th we were taking pics and sitting in the grass.  He complained of being "scratchy" but he is always scratchy so I figured I would just get him so oil and he would be fine. When I went to put oil on him he had bumps all over his legs that touched the grass. Soon after those same bumps had puss in them. Gross I know, but that's how bad his reaction was. I have seen kids get red from the grass, but nothing like this. It took us almost two weeks to get over that reaction. So if we play in the grass he has to have pants or very tall socks on. I change him as soon as we get in and he is in not able to walk in tall grass or even sit in any kind of grass. 

Bandage Wraps- We use 3M bandage wrap and have never had any issues with it. We will put oil on him, wrap him up, and allow the oils to really soak in. It also allows protects him from any kind of irritants. We ran out of 3M bandage wrap and went to the Tractor Supply to buy some more. We found some camo vet wrap and thought it would be fun for Jacob. It wasn't 3M brand though but at the time we didn't think much of it. We wrapped him up and he had it on for about 4 hours. I went to take it off and Jacob started crying and yelling. If you know my sweet boy he can be a bit dramatic when he is tired, as all 4 year olds are. I thought it was just that but after I got the bandages off I immediately knew he was having an allergic reaction and it was awful. We are finally over that now. 

We have come such a long way with Jacob and we finally have a handle on this thing. If you are dealing with the same thing remember never give up! It took us 3 years to get anyone to listen really listen to us. Once we started getting true help it took us another 4 months to figure out every trigger. This has been the most challenging time mentally, but it feels so  good knowing we have beat this thing! God has been our strengths through all of this. When we wanted to give up He gave us wisdom and showed us what we were missing. 

* I didn't take any pics this morning and Jacob currently has wraps on. As soon as I take them off I will take some pics of his CLEAR skin!!

So Many Emotions

I am struggling here. Struggling for people to understand what we are going through. When I am asked what we are doing or what is going on with Jacob it is hard sometimes. Their words say they understand but their body language says a whole different story. I am going to say this once and then move on. I AM NOT CRAZY!!!!!!!! The way we are going about this is not traditional. I know this. However, we have gone the traditional route and it does NOT work. In fact, it makes it worse. You give him one round of antibiotic, just one, and we lose all of the ground we have made. What good bacteria that he has is completely wiped out. Also, Steroids do NOT work on him. We have gone an entire month doing very strong steroids and it didn't make any difference at all. We have seen improvement with the non traditional way. It's just a very long and lengthy process.

 Jacob has a bacteria that is attacking him. We don't know what it is. We could do a test to try to figure it out but it's currently not available and even if it was it would be very costly.  We went to see Dr. Edwards today. Can I just say, he is a fantastic doctor? Between him and the boys new pedi, Dr. Brinker, we have a good team on our side. Anyways, at Dr. Edwards office it was very apparent how worn out I am. I am worn out for feeling like I have to defend myself in the direction we are going with Dr. Edwards. I am worn out that his skin looks fantastic one day and in a matter of hours will blow up with infection. I am worn out seeing that the bacteria is spreading and causing more infection in new areas. I am worn out from spending at least an average of $200 a WEEK on supplements. This week alone we spent $500 on appointments, oils, supplements, and medical supplies. I am not exaggerating in the least bit. We have been very fortunate to be able to afford this, but good grief I feel awful for those who can't afford it. So much so, that I have been seriously contemplating try to set up a fund in someway to help parents with kids with eczema so they can afford this. It won't cost this much forever, but when you have as much damage as Jacob does, it gets expensive! I went off on a little tangent there, but those who know me are used to this. :) I am worn out busting my tail and not seeing the progress I think I should. I am worn out seeing my son hurting. I am worn out when I hear people say, "Well at least he doesn't have such and such disease." This is not just dry skin. This is more serious than that. Look at the picture below and tell me that this is just dry skin. This happened overnight while he was ASLEEP. 

When he gets wounds like this they become infected and flare up around it. This is overnight through soccer socks. Because of the picture above we had to do the picture below.

We wrapped his arms and legs (up past the thigh) in vet tape. It was suggested by Dr. Edwards and seems like it's working. We bought several different colors to make it fun for him. We are now on the strongest probiotic there is. It's usually given to just adults, but at this point we are needing to hit this even harder. We are also using Melaleuca and Argentyn 23 silver. Both are working and doing their job. It just seems that the bacteria is fighting harder. 

   With all the frustration there have been a lot of positives as well. For example, the parents at his daycare are very sensitive to what he can and cannot have. They will ask me what they can do for him if they are bringing cupcakes for the other kids, or they even bring snow cones instead. There is ONE flavor that we have found he can have. That was a big treat for him to be able to participate like that. I am also proud of how much self control he has. Today we were at BJs brewhouse and we found a gluten free, egg free, dairy free pizza crust. They were even going to do olive oil instead of tomato sauce since he is sensitive to tomatoes. We had it all worked out and Jacob was so excited. But then we saw it had garlic and yeast, both in which he is sensitive to. That meant no pizza. He wasn't sad for even a second. He just smiled and said "Can I have chicken and vegetables then?!" When I told him yes he was excited about that too! He has a lot to teach me in that department. 

   We are still fighting this and I have to accept the fact that we are going to have doubters and that's ok. It's the supporters that keep us going. However, I feel like I need to say something to those doubting us and questioning our decisions. Until you have been where we are, it's hard to say what you would do. This hurts Jacob not just on the outside but in the inside as well. He has a lot of damage that needs to be repaired. It's a long process. Even a few I am closest to have doubted and even accused me of not doing enough. This is something I feel deeply and very sensitive to. I am not saying this out of anger or to make anyone feel bad. I know people mean well...most of the time. It's just something that is emotionally and physically draining so a little bit of understanding would do a world of good. To those supporting us, again thank you. Your kind words and encouragement help me when I feel like I am about to burst into tears because I feel like I am spinning my wheels. Thank you again!

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.