Mastocytosis (Urticaria Pigmentosa)
Probably around January we noticed 3 brown spots on Lincoln. We thought he was getting moles or something. They popped up around the same time.
At his 6-month well check (3/19/12), I asked the pediatrician to look at them. She said that moles don't pop up like that so we should have a dermatologist take a look at them. We scheduled an appointment with Joy Chastain's office (3/23/12), which Joe and I have been to for our skin. There are three ladies that work there and the one we were there to see, went to get another lady to look at them too. They were spouting off a lot of medical terms with their predictions. Ultimately, they recommended a biopsy so we could see what they were. Joe held Lincoln tight, which he didn't like. They injected numbing medicines and then they cut a piece of the one on his back. It was over quickly. I didn't like my babies' smooth skin being cut and scarred. We were told to keep it moist with Vaseline and a bandage and we'd have results from the lab in 7-10 days.
The following Friday (3/30/12), I had a voicemail from Joy Chastain's office to give them a call. The lady on the phone said that Lincoln has mastocytosis and it is an over production of mast cells in his skin. His body will produce chemicals, such as histamine in response to foods, medicines, the environment, and temperature. She said that we need to see a specialist at Emory in Atlanta and the soonest appointment is in June. She said we could probably get into Grady sooner. I do not know if Emory is better and that is why there is a wait and I do not know what the difference is between them.
I called Joe and told him the news. He asked me to text the name of the disease so he could research it during a break. I called my mom and told her and she also said she wanted to research it too. I told Lincoln's teacher when I picked him up from school. We didn't get to talk long about it and I didn't know what to tell her.
On the way home from school, Lincoln fell asleep like he always does. When he woke up, he had hives. I thought it was insect bites. I thought a mosquito got under his blanket and tore up his legs and arms. Then I took off his diaper and it looked like this:
It looked and felt like insect bites, warm and raised. They went away quickly. Then the next day, after he got out of his car seat from a nap, same thing! A patch on his butt cheek, and his arms and legs were flushed again.
I noticed that it was a response to heat from riding in the car and sitting in his car seat. He doesn't seem phased by them at this point. I think they are itchy, but he doesn't know to itch them and he doesn't act like he is uncomfortable. He's gotten a couple on his face and they only last a few minutes before disappearing. From what I've read, it may be nearly impossible to know what exactly causes the out breaks because so many things could be responsible. At this point, I know heat affects the chemicals in his skin.
The news is surreal still. Lincoln was born healthy so you partly believe you are in the clear. He didn't show signs of autism so again you think you are good to go. Then at 6.5-months, BAM! One day you have a healthy baby and the next day he has a rare skin disease. One day you have a baby that you believe can do anything and then the next you find out that he may have a lot of limitations. I tried my best to be as careful as I could throughout pregnancy to avoid certain foods, smoke, and activities. I exercised and stayed positive. As parents, we've made choices that have been hard for us, but best for Lincoln. Then we find out about this, which was out of our control. It's not even hereditary! 200,000 or fewer people have it in the US, mostly babies and children. It is diagnosed in the first year. So our next step is to see a specialist and see what mastocytosis means for our family. We believe God can heal Lincoln, but I also trust that God has a plan for Lincoln and He doesn't give us more than we can handle. Right now, Lincoln is still the same happy boy he was before the diagnosis. =)
Update blog post http://rebekah-ifyoureabirdimabird.blogspot.com/2015/03/mastocytosis-update.html
Rebekah
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| The brown lesion is above his nipple |
The following Friday (3/30/12), I had a voicemail from Joy Chastain's office to give them a call. The lady on the phone said that Lincoln has mastocytosis and it is an over production of mast cells in his skin. His body will produce chemicals, such as histamine in response to foods, medicines, the environment, and temperature. She said that we need to see a specialist at Emory in Atlanta and the soonest appointment is in June. She said we could probably get into Grady sooner. I do not know if Emory is better and that is why there is a wait and I do not know what the difference is between them.
I called Joe and told him the news. He asked me to text the name of the disease so he could research it during a break. I called my mom and told her and she also said she wanted to research it too. I told Lincoln's teacher when I picked him up from school. We didn't get to talk long about it and I didn't know what to tell her.
On the way home from school, Lincoln fell asleep like he always does. When he woke up, he had hives. I thought it was insect bites. I thought a mosquito got under his blanket and tore up his legs and arms. Then I took off his diaper and it looked like this:
It looked and felt like insect bites, warm and raised. They went away quickly. Then the next day, after he got out of his car seat from a nap, same thing! A patch on his butt cheek, and his arms and legs were flushed again.
The news is surreal still. Lincoln was born healthy so you partly believe you are in the clear. He didn't show signs of autism so again you think you are good to go. Then at 6.5-months, BAM! One day you have a healthy baby and the next day he has a rare skin disease. One day you have a baby that you believe can do anything and then the next you find out that he may have a lot of limitations. I tried my best to be as careful as I could throughout pregnancy to avoid certain foods, smoke, and activities. I exercised and stayed positive. As parents, we've made choices that have been hard for us, but best for Lincoln. Then we find out about this, which was out of our control. It's not even hereditary! 200,000 or fewer people have it in the US, mostly babies and children. It is diagnosed in the first year. So our next step is to see a specialist and see what mastocytosis means for our family. We believe God can heal Lincoln, but I also trust that God has a plan for Lincoln and He doesn't give us more than we can handle. Right now, Lincoln is still the same happy boy he was before the diagnosis. =)
Update blog post http://rebekah-ifyoureabirdimabird.blogspot.com/2015/03/mastocytosis-update.html
Rebekah
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