Epidermolysis Bullosa and this HEAT

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Oh my goodness, this weather is horrendous. Today, we have very high ozone levels in Charlotte. It is pretty severe. Last summer, we experienced our worst time, with my daughter’s health, which lead us to her diagnosis on 7/15/11. The palm of her hand had developed third degree blisters, within minutes, and we didn’t know why. She was screaming and crying, and in my mind, in horrible pain. By the time, we got her to the emergency room, we were immediately admitted, because (1) she appeared to have been purposely burned, and (2) this was our second admission for weird problems that were not normal or natural. Their first thought was to rule out child abuse, which is the worst thing ever to go through, even if mentioned as a protocol.

IS IT CANCER?

Because this was not our first time at this pass, I was ready to ask more questions, without sobbing uncontrollably. My worst fear was that my 6 month old had some form of weird cancer, and they were having a very hard time diagnosing her. I had begun mentally preparing myself for the absolute worst. This time, when the same inpatient pediatrician had come in, my baby was playing happily and was very content. Her behavior was normal. She was playing with the big ‘bubbles’ that had formed in the palm of her hand. I said to the doctor, we have been here so many times, we are seeing her pediatrician 2 and 3 times a week and that alone should let you know that my daughter is not being abused. My husband and I are bringing her to you, we are not hiding in the shadows. Therefore this time, I need for you to think like a doctor; I need for you to become nosy and inquisitive; become the researcher you were, when you decided to become a doctor. What can cause blisters that look like a third degree burn without pain? She is clearly not in any pain, at least now she is not. If it was a true burn, she would be hollowing now. I need for you to think. What can cause this, simultaneously, without an obvious reason?

She said she understood, and will make some calls. She was going to finally speak with a dermatologist, because whatever problems my daughter experienced related back to her skin. She came back, after speaking with a dermatologist and said that Gabriella may have EB, but the dermatologist needed to look at her himself. He came in later that night, and sure enough that’s what he felt was her diagnosis.

OH MY GOODNESS, IT’S THE HEAT

About two weeks later, on her other hand, her fingers had begun to swell, and then they just burst open, at the creases. The front and back creases on her little fingers were open. You could look down, and see her meat. We were being hit with a tsunami. It was so frightening. We did not know why she was suddenly getting so bad. This had never happened before. I didn’t find out until December 2011 that it was the heat that had wreaked havoc on our summer and my daughter’s skin.

After joining the support group, mid-August, my daughter had begun getting better. The fingers opening at the creases never happened again, nor the huge blisters. Her new finger and toe nails grew in properly, and had not fallen off again. Usually, they would grow back, and fall off. We had stopped seeing red spots on her fingers and toes, which was our signal that there was some irritation. The skin on her toes stopped shedding. July and August were the worst months, and then it was just over. It was like a bad dream, not our reality.

We went on to do three biopsies that came back inconclusive. The EB specialist in Chapel Hill, finally said to us that we may have seen the worst of it. He advised us that there is a type of EB that has a life span of only one year, and Gabriella my have just went through it, although the chances of that is as rare as the disease itself, but possible. He felt confident that we were probably not going to have any more problems, but still to check and protect her skin. If there were any more abnormalities to come and see him immediately. He also said that next summer will let us know if she has seen her worst. That’s when the dots connected that high heat (summertime) causes huge problems for EB children. It’s when they suffer the most. Wintertime is when the skin heals mostly, even in the worst cases; if there is a problem, they are not as severe as it would normally be in the summertime.

OUR PROTOCOL

We finally have a fantastic pediatrician, in Charlotte, that I am confident can handle any issues that may arise. Now, if she does not remind me, I go about life with my baby, without a thought of EB. However, she had to remind me last week, it’s getting hot. So, let’s make sure she has sunscreen, and bug spray that is deet free. However, do NOT take her out in the highest temperature, and if so, only if necessary. Make sure she has thin socks that will protect her from frictional rubs, in her water shoes or crocs. No, we do not wear any pair of shoes; we need breathable cloth shoes. or crocs,which are perfectly ideal. However, I found some cute water shoes that some EB children favors, at Target. I really like these, because she can run in them. She has also outgrown her bucket hat from last year, and I found a replacement at Wal-mart last week. With my small efforts to protect my baby, we are doing just fine. We are approaching our one year anniversary to this diagnosis, and it is hotter than it was last year, and I am thankful to say, so far so good.

There are other things that I still do as well. She only wears 100% cotton. I have found that other materials irritate her skin. She is moisturized from head to toe, after every bath. Every morning, regardless of the weather, I still check her hand and feet for any blistering or shedding or redness. I guess old habits are hard to break, huh? Nothing is certain, but God, so I pray, check, and keep moving. We are no longer held hostage to this disease.

3 thoughts on “Epidermolysis Bullosa and this HEAT

    P3R said:
    July 3, 2012 at 7:51 pm

    Do you have any idea how fantastic you are? Whatever its severity, EB is a really scary diagnosis, and you are learning, functioning, and taking care of business, all without panic. You are handling Lady G’s skin issues, instead of allowing them to handle you. Gettitt, Gurrrrl; I am proud to know you!

    Like

    Evette Sadohounme responded:
    July 3, 2012 at 10:41 pm

    Thank you!!! We have been able to survive this because of people like you!! God makes no mistakes!!

    Like

    Sue Altinkeser said:
    July 8, 2012 at 4:25 am

    You are fabulous and im proud to say you are my friend!!

    Like

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