Eczema Story - with pictures

 MAKAI'S ECZEMA STORY

Makai was born July 2, 2011 and was perfectly healthy and happy. He was SUCH an easy baby. He was a sleepy and content newborn with just a little gas trouble at night sometimes.

Makai 1 month

 

Makai developed eczema when he was 2-3 months old. He quickly got a ton of infections and started going downhill. I never shared pictures before but as a testament to how far he's coming I am going to put up some pictures of my sweet baby.

This is what it looked like when it first started... super subtle almost just like baby pimples - we thought it was at first.

Then it got rougher...

The day Makai was diagnosed with eczema and impetigo infection.
We but the blanket in-between his hands and face to protect him from scratching while still being able to play with his hands near his face (this technique only lasted for a couple days before it didn't work anymore). 

This wrap we used constantly:  sleepy time, car seat time and play time unless closely supervised (meaning that someone was holding his hands and playing with him). 
I had read a lot of stuff about eczema being related to diet so I made the decision to go on a strict diet eliminating all the top allergens in September 2011... Makai was almost 3 months old when I started.

Still a happy boy!
Bath's were SOOO challenging because it was so hard to keep him from scratching exposed skin. A lot of time he would wear his socks on his hands in the tub but we would still have to be right there holding his hands or watching closely. There was a period of time in November where his skin got really really bad - we had tried everything and nothing was working. I had read that taking baths could make eczema worse so he wasn't taking many, but then I also read the opposite -taking them often- could help, so we tried it. Around that time we began to bath him twice a day, morning and night, and cover in lotion. We used various natural creams, olive oil, coconut oil, other combination creams and finally Cera Ve cream which was suggested by a doctor. Cera Ve was helpful at first and then was not anymore. We used aquaphor a few times and it sorta helped to heal things up a little but made him VERY itchy also... so we stopped using it because it seemed to be not worth it. 

 

Makai is about 4 months here, getting some arms free play time and doing well for the first time in a couple months since the problem started.  His hair started falling out because of his constant rubbing. It was such a sad thing to see his beautiful hair go away because of that. When people pointed out that his hair was "so cute" or "funny" it really was something that bothered me because I was so sad for him. 

Our routine for Makai's skin during this time was crazy, we had to wash his face (just with water) every 2-3 hours (pretty much every time he had a diaper change we would wash his face and do the whole routine). We had to dab the oozing liquid that came out of his sores and re-lotion and re-lotion and re-lotion. We still bathed him in the morning and covered in Cera-Ve and Aquaphor and bathed him at night doing the same thing (no soap).  Doing this by myself when Joey was at work was near impossible and usually ended in yelling and tears. We would literally wrestle and I would use my arms legs knees and elbows just to try to hold him down and get him lotioned and dressed. How to keep a naked baby from scratching literally everywhere, while lotioning and dressing him, was literally impossible and I don't even know how I didn't lose my mind - I kind of was starting to. Yelling at him out of frustration was one of the saddest things because I knew he could not help it, he was only 4 months old. I knew he had no idea what was happening to him, but I still couldn't stop myself from getting frustrated. I tried everything to keep him from hurting himself. 

sign says: Day 2 of antibiotics 
This was when he got one of his first infections - "impetigo" they called it

It looked like this when it was healing... You can imagine how itchy that would feel to have that dried on your face!

my sweet baby.

At night he got loose and  scratched the crusts off. It was just like picking a scab so you can see that some was ready and some was not. 

Healing.

Happy boy playing with his daddy!!!

This is another time, it always would get cracked again and again - its not as bad or infected but still inflamed. Constantly going on and off of antibiotics was so annoying to me - I knew it was killing his immune system but we had no clue what to do. 

Thanksgiving day - Makai's skin starting to get really bad again after a good spurt for about a week. 

We always put a blanket behind his head in the car seat to keep his face clean and off the synthetic fiber and we would change it twice a day and more some days. 

Makai's face would ooze liquid out of the sores so that's why we would have to change the blanket very often. The bib was also to keep the car seat straps away from his face and would catch the liquid as well and help keep his clothes clean.  If you look closely at his arms you can see blue strips of cloth tied around them - I poked holes in the car seat and ripped up a pillow case into strips and tied his arms down to the seat. Super desperate to keep him from rubbing his sores and trying to keep away infections. It seems awful but it was the only thing I could do other than just physically hold his arms down constantly, which was impossible when I had to drive somewhere alone with him. 

His skin would crack and ooze like I said before. The steroids and creams didn't seem to do much of anything at that time. He would go on antibiotics for  a time and the cracks would heal but then they would come back immediately after he completed the dose.  We began trying natural treatments such as honey/cinnamon/tea tree oil/ oatmeal etc. I can't remember everything. The honey and cinnamon would heal the cracks a little but they would ALWAYS come back. 

My diet didn't seem to be doing anything other than make me lose weight like crazy.

This is how we slept for a couple months.... 
I could no longer leave him in his crib even though he was swaddled because he would get out of the swaddle so often, no matter how good of a swaddle it was. Little Makai Samson became SO strong and knew how to get out of anything. He also learned, even though his arms were swaddled, how to wiggle into the corners of his bed and rub his face in the crib slats or blanket or anything else around. I was very concerned he might suffocate or hurt himself badly when left alone like that. So we resorted to this. 
I would usually only be half asleep all night because when I fell asleep completely he would break free and scratch himself. There were many nights when this happened and when I realized he had broken free I would wake up to a bloody mess. Also there were a couple nights when he sorta slipped down and got the blanket over his face, very scary. BUT, I didn't know what else to do. I also had to put the pillow under his head or a plush blanket because he would rub his head back and forth on my chest most of the night and it hurt a lot! Without the plush banket inbetween it would rub my skin raw because he would move his head so forcefully! Sometimes Joey would try to be sweet and take him for me, but Joey is too deep of a sleeper he couldn't pay attention to baby. Pretty consistently through this time Makai would wake up no matter what about every 2 or 3 hours because he was itchy or his tummy hurt and I would pat him and he would usually go back to sleep after quite a bit of rubbing his head back and forth on my chest.

This was early December and Makai's skin was at it's normal "bad" state. However a week from this picture he got a very bad fever and ended up in the ER because of a crazy weird looking infection that kind of developed over the previous week but then exploded over night. That along with his fever got everyone very concerned. 

 In the ER at Mary Bridges - December 13, 2011

Makai was very lethargic because of his fever and skin had rashy weird bumps that I had never seen that they were diagnosing as "eczema herpeticum"

 Makai's infections - Eczema Herpeticum and Staph Orius and Groub B Srep Infection

 These arm immobilizers the hospital provided were suppose to keep him from scratching but I looked at them and knew at once those would not stop him. The scratches on his face are from getting out of these things in the middle of the night.  I slept with him on me in the hospital bed at night just like our normal routine at home but he couldn't be swaddled because of his IVs.  I also had to convince them to give us a normal bed so we could sleep that way rather then the crib they provided because there was no way he could sleep alone in a crib.

 

Still a  happy boy!!!
Thank God, Joey got to take work off and stay in the hospital with us the whole time. I could not have survived without him.

 Makai had IV antibiotics for the infections and also Benadryl through an IV to supposedly help the itch but it seriously did not seem like it did anything at all for his itchiness so I told them to take him off of it. When he was off of it there was no change in his amount of rubbing or anything so I have no idea why it wasn't doing anything! 

Sweet baby boy taking his nap with ducky.

The trip to the hospital ended up being 5 days. They thought they had to give him a pic line so we could continue IV antibiotics at home because of bacteria in the blood and they attempted to put one in and the procedure failed. For this procedure they had to put him under and it was the craziest thing seeing the doctor pump his veins with the white liquid and then seeing my sweet baby just 10-15 seconds later, after fighting it hard, doze off.  When they were attempting the procedure we all waited in the waiting room for him - we weren't allowed in there. 
While waiting, I was not nervous but just anxious to see him. The whole hospital trip I felt very at peace. I knew we were being taken care of and was so thankful to be there. I had felt so alone in the fight for his health and was so tired and worn out that I was just happy that Makai was getting attention from doctors and nurses and they were helping me take care of him and make him better. 
SO anyway, I guess his veins are so tiny and "difficult" so they said they could only get the line up to a certain point and then it was like they hit  brick wall. 
I knew his veins were difficult already because when the nurses put the IV in when we first got to the hospital it took forever and when they drew blood they had to do it from his head instead of his arm. (which was one of the worse parts of the whole thing, by the way.)
Anyway, It was a blessing and miracle that it failed though because when another doctor looked at him and his information he said he no longer needed it.

After being told we didn't need the PIC we got to leave the next day!!!!!

Back at home with ducky

 First haircut 6 months old

Makai started doing better after the hospital, it was kind of the turning point. We started to figure out most of his allergies through skin prick testing- Dairy, Wheat, Soy, Eggs, Peanut
I already was not eating these things since being on the diet, but I began to be way more careful and avoid other things as well that could possible irritate him - citrus fruits, nightshades, whatever else!

He had rough times still to come but for the most part that was the worst of the worst at the hospital.
He began to grow out of it, and also we polished our routine a bit and found that aquaphor on sores worked the best to heal (and the real aquaphor, not an off-brand!).
We also used a steroid regularly which helped - I still don't understand though why it did not work when we tried it when he was younger. 

 6months old - First time being held face toward me in 4 months!

I remember this moment so well. We could NEVER hold him like a baby or cuddle. He was always faced away from us and like in a straight jacket or pinning his arms down so he did not rub on us. Finally he was able to hold us without rubbing! Such a joy to actually just hold my baby.

 Holding daddy without trying to rub on his sweater!

 Having a rough day... You can see his face is very irritated.

Along with the diet I also gave up scented lotions-perfumes-deoderant-facewashes, whatever else to try to avoid irritating his skin. We alway washed all of our clothes in the special detergent he used for those times when he was touching us. We tried to keep him away from dust, animals and whatever else might possibly be a cause. 

6 months old - First time playing on his own in 4 months
 These arm bands saved our lives. Pedi-wrap arm restraints. They allowed makai not to be swaddled always but to wiggle his arms somewhat freely while still making his elbow unable to bend so that he could not reach his face. He could still reach other areas though.

 Makai having fun with his Nana

 I rigged up lots of different things to keep his arms down in the car (velcro, etc.) And I threw these simple seat belt covers or used a blanket (like below) on to keep the seat belt from rubbing on his face and I didn't bother making them "nice" because they had to be changed so often or thrown away.

Skin looking clear!

 Getting big!

 Easter

 Happy Boy

 First time since he was a couple months old having his arms free!! (and he's in a t-shirt!!)  He played with his little wooden guitar and did not try to scratch his face for about 2 minutes... such an accomplishment for this little guy.

What a special day :)

First time in a swing!!!


Makai had very frequent HSV1 outbreaks ever since december when he got it the first time. His eczema was doing better and better but the herpes kept flaring it up again and make him very itchy. We just kept putting him on the oral acycolvir that gets rid of it temporarily but he would still outbreak a couple weeks after.

 Makai and his cousins

 Learning to eat with Daddy

I have to say that I talk a lot about my struggles with Makai and don't mention Joey a lot but let me tell you- Joey was the most perfect husband/daddy in this situation. He always helpful, so patient and we split the work 50/50 whenever it was possible to do so. I think it is because of this hard time with Makai that he such a good dad to Makai today. He does more than any dad I have ever witnessed! He  takes initiative in taking care of him and does lots of the dirty work for me. He knows everything Makai needs, when he needs it and exactly what to do.  He is so amazing and I am so so so blessed!!!!

Allergy Testing

Along with eczema, Makai has a lot of stomach issues. He seemed to be unable to digest anything! I think along with allergies he has some food intolerances. I cut out meat one time when he was still breastfeeding to see if it would help him sleep and it did! So I didn't eat meat for a few months. It helped but he still had the stomach pain. We are still figuring out the cause of this... 

 Little checkup

 Playing at the beach with his arms free - 1 year old

 Precious boy.
At around 1 he started being able to have his arm bands off during play times on good days.

At the zoo!

 Makai loving on his new baby brother or sister to come!!
Yep, #2 on the way!!

At 14 months Makai was given peanut butter and ended up in the ER. This is a picture of him before it got really bad.

 This is a picture a few hours later after the Epi-pen and oral steroid
Good as new!

That same "peanut day" amazingly we went out and were having fun in downtown Poulsbo!

Arms free Makai!!!

 What Makai looks like now!! Healthy and beautiful skin - Most of the time :)

 He still has rough days, but things are much easier. If he gets broken skin at all he's at high risk for infections... but if we take care of them right away, he does great!

He is totally weaned so that means he is eating a ton, and I  am now eating a ton!!
He is still allergic to dairy, wheat, soy, eggs, peanuts, walnuts and beef BUT we find things to feed him and are discovering more and more as he gets older.

Makai is on a daily oral acylovir routine that we started him on around 1 year old. It prevents herpes outbreaks and he is to do it for a year. It is not my first choice but he was on it so often anyway because of his constant breakouts that it seemed like a better option. He hardly gets the breakouts when he is on it and therefore his skin is less irritated and his eczema has calmed down IMMENSELY.

Our routine for his skin is very simple, we just keep it clean (like clean off food or dirt immediately), moisturized when dry (aquaphor or other lotion like Grandma's) and put a little steroid on areas that get too flared up.
We don't bath him regularly, only if he really needs it.




So that is sort of the short version of our journey.... it has been NUTS. I cannot believe what we have been through looking back on it. It is not over but the place we are now is so amazing. Makai is almost completely healed of signs of eczema, like you cannot see it when you look at him - his skin is just a bit dry on his ankles or sometimes his collar bone.... but we pretty much never treat with steroid anymore and hardly need to put on lotion. His allergies are the same but as long as he doesn't eat those things, he's great! I also have to be careful of other things like him getting too much of something he may not be allergic to just because his tummy can't handle too many vegetables or fruit etc. 

I am so happy my baby is healthy and sleeping well and growing up big and strong!!! I am so thankful that God is healing him and I am so thankful to all of my friends and family for praying for him and supporting us.  :)!!