When I say it got worse, meaning instead of having dry red spots usually being on his knees, hands, elbows, and feet. He was developing a hot red itchy rash over his whole entire body. Gradually his skin became more and more dry and more and more red and sore. I would cream and grease his skin and in literally ten minutes it would dry out. It was the weirdest thing and the most frustrating thing because nothing was helping and my baby was miserable. After a while his skin couldn't tolerate anything that I put on it except Vaseline, which his skin would soak up and it didn't heal the eczema.
By this time I had gone to the Doctor several times and always hearing the same thing. It's just "severe eczema" it will be outgrown or at least get better with time. "Keep doing what I'm doing". I hated hearing that. So about a month went by with dealing with this and I didn't really realize how bad it was getting. My husband had mentioned that he was looking different and sick, but me being in denial and I guess being around him all day every day I hadn't noticed that much of a change. For a while he had been acting puny but I don't know I guess I just thought it was the weather and cold and him being so miserable and uncomfortable with his skin. Well then we made a trip to my Aunts house who is a nurse and husband a doctor which we see often but at this time it had been about two weeks. Brink just turning three had tee teeing down but was still getting use to sitting on the potty was in process of a bathroom break which thinks he has to get completely naked to do such, my aunt noticed his little body had changed since the last time she saw him.
She said it looked like his muscles were deteriorating and looks like he lost some weight. Well that freaked me out. My husband had noticed a little change but I really don't think he even realized how much either because he also saw him everyday. That is when we pulled out the camera to look at old pictures. As soon as we did this, both of our hearts dropped. He looked like a totally different little boy. We noticed his hair was soo thin and his eyebrows were almost gone. We had been talking about his face looking different but we left it at being because it was red and itchy and swollen. It's sounds crazy not to have really noticed it before but you have to understand it is hard to notice when you are seeing it slowly change. But once we saw that picture it hit us like a ton of bricks.
These pictures show from start of getting sick to about two months after. The next day I made another doctor's appointment for that day and it had been about a month since the last appointment. When the doctor finally came into the room I could see on her face that she was worried. Well that appointment was about 5 hours long. They ran every test possible and at first they considered cat scratch fever and she also pulled me to the side and told me tears in eyes that with all of the symptoms she is afraid that he had contracted HIV. Which would take about 6 weeks to find out. By that time I was freaking out, crying, scared and racking my brain on where in the world he would have gotten that and a lot of blaming myself. A long six weeks went by and cat scratch and HIV was negative. Thank God for that but we still didn't have any answers on what is going on with him.
By all the time that had passed. Nothing was getting better and everything was getting worse. Brink had lost about 5 pounds. His skin felt like leather and was peeling off like he had a sun burn. His face was swollen, his muscles were withered away; The way he was described was the body of a 80 year old man. On top of everything he would scratch himself to bleed and never slept. No one did. I sat and held him 80% of the day and stayed awake at night watching him because I was so afraid. I would rub him and scratch his skin for him so that he could relax as much as possible. During all of this we spent three full days each week at the doctors being sent from doctor to doctor and test after test. Still no answers. Then we noticed that his lymph nodes were huge in his groin area, neck and underarms. Which is a sign for infection. During this time we were seeing Oncologist, Hemop, GI doctors, Immunology, dermatology and infectious disease. Still no answers. They were afraid that he had lymphoma; so he was scheduled for surgery to remove his lymph node under his arm. After surgery they said he should be fine.
Well he wasn't. Under his arm was swollen up like a baseball from the surgery. We rushed to the emergency room and they said that it was fluid built up and basically exploded while we were there and drained out. So they sent us on our way. Well this happened about three more times in about a month before it finally healed. When the results came back they were negative for cancer. Thank God again for that, but it seems like we would never get our answers and nothing was helping and my baby was withering away before our eyes.
While being at the Hemop doctor they took an x-ray that showed that he had kidney failure. So now we were off to see the Urologist. Those results came back and his entire right kidney was blocked and there was blood in his urine and he had three kidney stones. What three year old has kidney stones? especially since I do not give him soda. But apparently he is prone to getting them and has nothing to do with anything he has ate. So another surgery was scheduled.
By all the time that had passed. Nothing was getting better and everything was getting worse. Brink had lost about 5 pounds. His skin felt like leather and was peeling off like he had a sun burn. His face was swollen, his muscles were withered away; The way he was described was the body of a 80 year old man. On top of everything he would scratch himself to bleed and never slept. No one did. I sat and held him 80% of the day and stayed awake at night watching him because I was so afraid. I would rub him and scratch his skin for him so that he could relax as much as possible. During all of this we spent three full days each week at the doctors being sent from doctor to doctor and test after test. Still no answers. Then we noticed that his lymph nodes were huge in his groin area, neck and underarms. Which is a sign for infection. During this time we were seeing Oncologist, Hemop, GI doctors, Immunology, dermatology and infectious disease. Still no answers. They were afraid that he had lymphoma; so he was scheduled for surgery to remove his lymph node under his arm. After surgery they said he should be fine.
Well he wasn't. Under his arm was swollen up like a baseball from the surgery. We rushed to the emergency room and they said that it was fluid built up and basically exploded while we were there and drained out. So they sent us on our way. Well this happened about three more times in about a month before it finally healed. When the results came back they were negative for cancer. Thank God again for that, but it seems like we would never get our answers and nothing was helping and my baby was withering away before our eyes.
While being at the Hemop doctor they took an x-ray that showed that he had kidney failure. So now we were off to see the Urologist. Those results came back and his entire right kidney was blocked and there was blood in his urine and he had three kidney stones. What three year old has kidney stones? especially since I do not give him soda. But apparently he is prone to getting them and has nothing to do with anything he has ate. So another surgery was scheduled.
By this time it was January and brink had a miserable Christmas and didn't even want to get up to open presents. He stood up for about five minutes and laid right back down. I had to help him open his presents and he didn't care anything about them. Which is definitely not normal for a three year old boy. He was at the age to really start getting excited about it. But wasn't.
After a five hour kidney surgery he was in the room and they came in and said everything went fine and he needed to rest and we all stayed in the tiny room that night with him. The next day one of the blood samples came back positive for an infection in his blood stream but still no exact diagnosis. So they put him on three, ten day treatments of antibiotics and after a month he made a miraculous change.
With still no real answer or explanation we will continue to live in fear and have caution on everything he does and where he goes and what he's around. Since then he has started to get sick two more times, but knowing what to expect he was able to be treated when symptoms started. The only thing that they can tell us is that because he has eczema and he also sucks his thumb; that he probably scratched something into his skin that caused this illness.
I want people to be aware that eczema is not a harmless condition, it can lead into many, many other serious problems and infections. It is a really scary thing to see your little boy go through so much over something that is so easily overlooked. When having eczema the skin can not fight off the bacteria that healthy skin can.
Brink now takes bleach baths once a week, and washes his hands tons of times a day and he now knows that he scrapes the soap under his nails. We also cream him up and wrap ace bandages around his arms and legs when he sleeps at night because that is the main time that he really scratches. He is now also prone to getting other serious infections because his body did go through all of these problems.
He also has a very strict diet being allergic to fish, corn, milk, soy, eggs, nuts, most animals, dust, mold, and more outdoor allergens. He also now is also diagnosed with asthma.
Even through all of this he is the most happy little boy. We now have his health under control and he is healthy and looks better than ever. We still have to be very cautious on him and watch him closely and restrict him from certain things.
brink today
I have tried so many products for eczema and know a lot of tricks so if you are also struggling with this then please feel free to ask and get my tips on what I found that works and doesn't burn.
Also I would like to share how wonderful Children's Hospital in Birmingham Al. is. They have the most caring and personable staff around. I remember one time when I was at a earlier appointment and had another one scheduled later that day, my phone did not have service in the hospital and they actually called the office that I was at to talk to me about my later appointment. All doctors communicate very well. I never went to a new doctor and was asked anything that was going on. They already knew everything. It was amazing and they always called me, brink and my husband by name. I couldn't ask for a better experience in such a tough time.
My favorite lotion is Neosporin eczema lotion, found by the band aids. The only lotion that brink hasn't complained about burning. They also have body wash and itch cream.
No comments:
Post a Comment