Scariest moment of my life. Easily.
Last fall my four year old had a reaction to a Cephalexin antibiotic. An RX that he had previously, with no incident. A very rare reaction. I gave him the antibiotic before bed, and because of his high fever, he and I slept on the cozy sofa in the game room. He itched incessantly throughout the night, but because he has eczema (pretty bad), this isn't completely out of the ordinary for him. I didn't turn on the lights during the night to take a closer look. I had no reason to believe it was anything other than eczema. In the dark, I put some of his steroid cream on it (which I rarely ever use), as well as Aquaphor. It didn't help. In the morning I was amazed when I looked at his little skin. (To be honest with you, I am only fairly certain it was Cephalexin, it could have been Children's Advil. I can't say with 100% certainty.)
I have wanted to write about this for a while now, but have been unable to put our experience into words. It still brings up such raw emotion in me, brings me to tears, and completely humbles me. Our story could have had such a different ending, and only because of maternal instinct, which can be summed up best as: BY THE GRACE OF GOD, we have a completely healthy five year old today.
Throughout the night, my sweet boy had developed an extremely abnormal, unusual, bizarre, atypical, significant (choose any synonym you want) rash, that was predominantly on his lower body. I read the information packet given to me by the pharmacist that describes the RX, and it stated; "Call your doctor right away if you notice... rash...". So, I did call the doctor right away. I spoke with the receptionist who did not take me seriously at all. She said that the doctor would be able to get back to me by the end of the day. I explained to her that I was not overreacting, and my child had a previous mild reaction to amoxicillan, and this was completely different. She reminded me again that the doctor would contact me before the end of the day.Within two hours it started to spread to his ears, hands, and elbows. I called the doctors office again. They suggested I "stop the medication and look forward to a call from the doctor by the end of the day". It was extremely frustrating. I asked them SEVERAL times if there was ANYONE I could email a picture of his 'rash' to, but of course, there was not.
I texted a picture of my sons skin to my mother in law, who happened to be at a pharmacy picking up a prescription, and she showed it to the pharmacist. The pharmacist told my MIL that it definitely didn't look like a normal allergic reaction to a medicine and we should call the doctor right away. So, I called the doctor. Again. For the third time in 3 hours. And, for the third time I was ignored.
I didn't know what to do. It definitely didn't seem like something we needed to go to the ER for, but I just knew that it wasn't a normal reaction. That day was a really rough day. My little sweetie was very uncomfortable. At the end of the day, when IFINALLY heard from the doctor, he suggested I stop the medication, and they could write me a prescription for something else. I was not very fond of this particular doctor to begin with, and by this point, I really disliked him. The receptionist and the doctor did not need to tell me to stop the medication. I only administered ONE dose to Brody, which was done the night before. I felt like shouting "DUH!" at them.
The next morning his rash looked even worse. There were little bubbly spots on his fingers, hands, and feet. I called the doctor the second they opened. The said they could get me in that afternoon. Ugh. I was really interested to find out what was going on, so I called several different pharmacists, describing what was going on. Every single one of them was much more helpful than the pediatrician I had spoken with the day before. All of this prompted me to do some online research. The one thing that kept coming up was Stevens Johnsons Syndrome, or SJS. Very scary. Very serious. Can be fatal. I told my mom on the phone before Brody's appointment that I thought it might be SJS. She thought I was being dramatic. My intuition told me otherwise. I just had a feeling. I packed a very small hospital bag just in case. All five of us went to the doctor appointment together.
We saw a brand new doctor that day. In fact, we saw the ONLY doctor in this area who was familiar with this condition. How is that for luck? Beyond crazy. Too bad I don't believe in luck. I do believe in God's hand of protection. SJS is so RARE. This doctor, this amazing, brand new doctor, looked over my baby and quietly told me my worst fear. SJS. I tried so hard to hold it together. I had done my research. I knew what this condition did. I knew what it looked like, and I saw how people ended up. This is a condition that basically burns you from the inside out. It is a life threatening skin condition. You can't stop it. There is no cure, only supportive care to help ease the pain of the patient.
I had to leave the room so I could cry without my boys seeing me. I didn't want to scare them. I allowed myself one minute. We were told we would need to wait while they called the hospital to get a room ready for Brody. After my one minute was up, I phoned our parents, who dropped everything they were doing to meet us at the hospital.
When I said that our doctor was the only one in this area who was familiar, I wasn't joking. She just happened to study at Georgetown, where she 'just happened' to see several SJS patients. This condition is so rare, that few doctors have actually ever seen it. We were blessed to get one who was very familiar with it.
When we arrived at the hospital they took Brody to his room right away, while I stayed to fill out the mounds of tedious paperwork. About that time our parents arrived. Our parents were devastated. I had never seen them so upset, so worried, so broken. I felt like I matured a lot that night, whether it was peace or adrenaline, or both, and I felt like I was the one providing comfort to them. If you have ever been in one of these situations, you understand. You don't have a choice, you just react.
Once situated in our room, Brody was assigned a hospitalist, and unfortunately, our pediatrician who was familiar with SJS, was gone. We were stuck with a doctor who had barely heard of SJS let alone seen it. Each time he came to check on Brody, which was several times a day, he brought numerous different individuals with him; to come see the 'medical mystery'.That was fun. It was tough, I'm not going to lie. The first night was AWFUL. My baby scratched and clawed at his skin all night long.
The next day the doctor said he wanted to start Brody on a steroid, and if there wasn't marked improvement within several hours we would need to transfer to Stanford to be near a burn unit. Scary. I was receiving so much pressure from family members, who had done their own research on SJS, that thought we needed to transfer Brody somewhere else; out of our small town hospital. I felt a little overwhelmed on what to do.
When the doctor checked Brody that afternoon, he said his 'spots' looked better. I disagreed. My husband disagreed. Our family disagreed. We thought they looked worse. We had been with him all along, watching this thing progress. I had taken tons of photos to document what was happening on his skin. He now had 'spot's on his mouth, lips, face, in his nose, and his arms were starting to get covered. It looked terrible. My sweet baby did not look good. We tried to explain this to the doctor. He was only going off of memory. Nothing else. He said we should give it until the next morning. By the morning his spots had started to dry out and turn a very dark red, but it didn't look like new spots were appearing. There was really nothing else they could do for him at this point, we could monitor him at home, so he was discharged. My sweet, little boy sat in a giant wheelchair and was wheeled out of the hospital. It was such a sad sight, but a relief to be going home.
I was given a giant packet of discharge instructions. Those steroids were no joke. He got puffy. He gained weight. He had to pee every 5-10 minutes. His brothers teased him about being on steroids and being a muscle man, his nickname was Melky (for Melky Cabrera). It was no bueno. But the worst of it, not related to the steroids, was that his skin started peel off. It was so disgusting. It was mostly on his feet, hands, and knees. It looked like a pile of cornflakes in his bed. So disgusting.
All of this led to lab work, 2 echo cardiograms, finding out that he previously had Kawasaki Disease, seeing numerous specialists at the Children's Hospital, and being scared to death to EVER give him another RX again. It was a long several months. But it's over :) I don't think about it much at all. Although I will say that I shed a few tears while writing this. And I sobbed while looking at the pictures, vividly recalling our experience.
This happened from just
ONE DOSE of RX. One dose. Can you imagine if he had more? It's something I would rather not think about. That first evening Brody was admitted, Psalm 57:7 kept running through my head. "My heart, O God, is steadfast, my heart is steadfast; I will sing and make music." That verse was very comforting to me. And, I'm not sure if you believe in the power of prayer, but WOW, did we have some amazing people praying for us. On our way to the hospital I put these 7 words on a facebook post; "Pray for my sweet Brody please. Thanks". Nobody asked questions, they just prayed. We felt those prayers. And we appreciated them so incredibly much. We basically had the best possible outcome to our situation that their could be. Wow. How great is our God?
This is the first time I have posted any pics. I am only doing this with the hope that this might help someone else.
It started off like this...
Spread to nose, ears, and mouth (some sores were inside mouth) :(
This is what they looked like before they flattened and started to dry out.
Last fall my four year old had a reaction to a Cephalexin antibiotic. An RX that he had previously, with no incident. A very rare reaction. I gave him the antibiotic before bed, and because of his high fever, he and I slept on the cozy sofa in the game room. He itched incessantly throughout the night, but because he has eczema (pretty bad), this isn't completely out of the ordinary for him. I didn't turn on the lights during the night to take a closer look. I had no reason to believe it was anything other than eczema. In the dark, I put some of his steroid cream on it (which I rarely ever use), as well as Aquaphor. It didn't help. In the morning I was amazed when I looked at his little skin. (To be honest with you, I am only fairly certain it was Cephalexin, it could have been Children's Advil. I can't say with 100% certainty.)
I have wanted to write about this for a while now, but have been unable to put our experience into words. It still brings up such raw emotion in me, brings me to tears, and completely humbles me. Our story could have had such a different ending, and only because of maternal instinct, which can be summed up best as: BY THE GRACE OF GOD, we have a completely healthy five year old today.
Throughout the night, my sweet boy had developed an extremely abnormal, unusual, bizarre, atypical, significant (choose any synonym you want) rash, that was predominantly on his lower body. I read the information packet given to me by the pharmacist that describes the RX, and it stated; "Call your doctor right away if you notice... rash...". So, I did call the doctor right away. I spoke with the receptionist who did not take me seriously at all. She said that the doctor would be able to get back to me by the end of the day. I explained to her that I was not overreacting, and my child had a previous mild reaction to amoxicillan, and this was completely different. She reminded me again that the doctor would contact me before the end of the day.Within two hours it started to spread to his ears, hands, and elbows. I called the doctors office again. They suggested I "stop the medication and look forward to a call from the doctor by the end of the day". It was extremely frustrating. I asked them SEVERAL times if there was ANYONE I could email a picture of his 'rash' to, but of course, there was not.
I texted a picture of my sons skin to my mother in law, who happened to be at a pharmacy picking up a prescription, and she showed it to the pharmacist. The pharmacist told my MIL that it definitely didn't look like a normal allergic reaction to a medicine and we should call the doctor right away. So, I called the doctor. Again. For the third time in 3 hours. And, for the third time I was ignored.
I didn't know what to do. It definitely didn't seem like something we needed to go to the ER for, but I just knew that it wasn't a normal reaction. That day was a really rough day. My little sweetie was very uncomfortable. At the end of the day, when I
The next morning his rash looked even worse. There were little bubbly spots on his fingers, hands, and feet. I called the doctor the second they opened. The said they could get me in that afternoon. Ugh. I was really interested to find out what was going on, so I called several different pharmacists, describing what was going on. Every single one of them was much more helpful than the pediatrician I had spoken with the day before. All of this prompted me to do some online research. The one thing that kept coming up was Stevens Johnsons Syndrome, or SJS. Very scary. Very serious. Can be fatal. I told my mom on the phone before Brody's appointment that I thought it might be SJS. She thought I was being dramatic. My intuition told me otherwise. I just had a feeling. I packed a very small hospital bag just in case. All five of us went to the doctor appointment together.
We saw a brand new doctor that day. In fact, we saw the ONLY doctor in this area who was familiar with this condition. How is that for luck? Beyond crazy. Too bad I don't believe in luck. I do believe in God's hand of protection. SJS is so RARE. This doctor, this amazing, brand new doctor, looked over my baby and quietly told me my worst fear. SJS. I tried so hard to hold it together. I had done my research. I knew what this condition did. I knew what it looked like, and I saw how people ended up. This is a condition that basically burns you from the inside out. It is a life threatening skin condition. You can't stop it. There is no cure, only supportive care to help ease the pain of the patient.
I had to leave the room so I could cry without my boys seeing me. I didn't want to scare them. I allowed myself one minute. We were told we would need to wait while they called the hospital to get a room ready for Brody. After my one minute was up, I phoned our parents, who dropped everything they were doing to meet us at the hospital.
When I said that our doctor was the only one in this area who was familiar, I wasn't joking. She just happened to study at Georgetown, where she 'just happened' to see several SJS patients. This condition is so rare, that few doctors have actually ever seen it. We were blessed to get one who was very familiar with it.
When we arrived at the hospital they took Brody to his room right away, while I stayed to fill out the mounds of tedious paperwork. About that time our parents arrived. Our parents were devastated. I had never seen them so upset, so worried, so broken. I felt like I matured a lot that night, whether it was peace or adrenaline, or both, and I felt like I was the one providing comfort to them. If you have ever been in one of these situations, you understand. You don't have a choice, you just react.
Once situated in our room, Brody was assigned a hospitalist, and unfortunately, our pediatrician who was familiar with SJS, was gone. We were stuck with a doctor who had barely heard of SJS let alone seen it. Each time he came to check on Brody, which was several times a day, he brought numerous different individuals with him; to come see the 'medical mystery'.
The next day the doctor said he wanted to start Brody on a steroid, and if there wasn't marked improvement within several hours we would need to transfer to Stanford to be near a burn unit. Scary. I was receiving so much pressure from family members, who had done their own research on SJS, that thought we needed to transfer Brody somewhere else; out of our small town hospital. I felt a little overwhelmed on what to do.
When the doctor checked Brody that afternoon, he said his 'spots' looked better. I disagreed. My husband disagreed. Our family disagreed. We thought they looked worse. We had been with him all along, watching this thing progress. I had taken tons of photos to document what was happening on his skin. He now had 'spot's on his mouth, lips, face, in his nose, and his arms were starting to get covered. It looked terrible. My sweet baby did not look good. We tried to explain this to the doctor. He was only going off of memory. Nothing else. He said we should give it until the next morning. By the morning his spots had started to dry out and turn a very dark red, but it didn't look like new spots were appearing. There was really nothing else they could do for him at this point, we could monitor him at home, so he was discharged. My sweet, little boy sat in a giant wheelchair and was wheeled out of the hospital. It was such a sad sight, but a relief to be going home.
I was given a giant packet of discharge instructions. Those steroids were no joke. He got puffy. He gained weight. He had to pee every 5-10 minutes. His brothers teased him about being on steroids and being a muscle man, his nickname was Melky (for Melky Cabrera). It was no bueno. But the worst of it, not related to the steroids, was that his skin started peel off. It was so disgusting. It was mostly on his feet, hands, and knees. It looked like a pile of cornflakes in his bed. So disgusting.
All of this led to lab work, 2 echo cardiograms, finding out that he previously had Kawasaki Disease, seeing numerous specialists at the Children's Hospital, and being scared to death to EVER give him another RX again. It was a long several months. But it's over :) I don't think about it much at all. Although I will say that I shed a few tears while writing this. And I sobbed while looking at the pictures, vividly recalling our experience.
This happened from just
This is the first time I have posted any pics. I am only doing this with the hope that this might help someone else.
It basically burns you from inside out... you can see how bright red his foot is, it looks burnt.
See all that lovely peeling? So sad.
NOT cornflakes - it's dry skin that peeled off while he was sleeping!
My sweet, sweet baby. The 'spots' started drying up.
This still just blows my mind.
His knee
"bubbling up"
This is what he looked like when the doctor (who sent us to the hospital) examined him.
Notice how the skin is just bubbling up - it's burning from the inside. It's burning the skin and then it peeled off. Sooooo crazy.
Wow, this still brings me to tears! It's almost been one year...
ReplyDeleteGod is very amazing! Your strength for your son is abundant and I'm sure helped through this horrific ordeal. I have never heard of that. I am so happy for your family that all is well now. Glory be to God!
ReplyDelete