Penicillin Allergy

 This is what Rhett looked like Tuesday morning. If you haven't read how it all started on Monday, read the post before this one.  There are 2 reasons I'm about to re-hash the events of the week of Rhett's allergic reaction to penicillin.  First of all, maybe if I write it all down here it will quit haunting me.  I go over and over what happened in my head and have so many regrets about how I handled the situation.  Maybe if I confess it all over the internet it will leave me alone.  Secondly, I was uneducated. If even one person learns something that could help them be prepared for if and when their child has an allergic reaction to a drug, it will all be worth the novel I am about to write.  Also, I am not bashing or blaming any doctors or treatment or advice we received during the course of this nasty reaction.  I take all responsibility for the actions that were taken to identify and treat my son's penicillin allergy.  Here's a little background: I didn't know anything about a penicillin allergy or that amoxicillin even had penicillin in it.  I didn't know that you could take 10 days of a drug and be allergic but not react.  I certainly didn't know you could take that same drug for 7 more days before showing any signs of a reaction and then have a reaction.  I know when you go to the doctor they ask you if you are allergic to anything.  I'm not, so I've never thought very much about that question.  I know that Dr. Smith asked how Rhett did the first time on amoxicillin before he prescribed it again.  And I said fine.  I know that I'm not a big "go to the doctor and take medicine" type of person, especially antibiotics.  Some people want to have a doctor call them in a Z-pac when they have the first sniffle of a runny nose.  I think that if you take antibiotics for every little thing, they're not going to work when you really need them for something.  And half the time if you do go to the doctor they can't really identify 100% what you have.  It could be a cold, it could be the flu (but flu tests aren't 100% either), it could be allergies, it could be a virus.  So, why take an antibiotic unless you certainly have something that it will treat?  I'd rather let my body do the work and keep a healthy immune system that will appreciate antibiotics when needed.  Well, that's the way I feel about my own health.  I'd rather tough it out on my own than go to doctor most of the time.  But that's certainly not the way I feel about my children's health.  I don't want to push drugs on them either, but if they're sick I take them to the doctor, believe every word I'm told, and give the prescribed medicine as indicated, verbatim, not a moment sooner than every 6 hours or whatever it is.  I even write the days on their antibiotics with a Sharpie and check off each dose so I know it's been given correctly.  I don't joke around with my kids' health.

 Okay, so Tuesday morning this is what we woke up to.  The benadryl was not touching the rash.  I knew Rhett needed to see a doctor, but I was conflicted about where to take him.  Hope, Arkansas is not the world's finest destination for health care.  I so badly wanted to be home with our pediatrician and get his trusted advice. I called my good friend that is a doctor, not a pediatrician, but one of the smartest people I know.  He also has small children.  I described what had happened, mentioned the amoxicillin, and sent him the above 2 pictures of Rhett's rash.  He told me that his oldest daughter used to get rashes like that when she was little and it was probably viral.  He told me to go ahead and give him the amoxicillin because it would help if it was a virus, and that he would probably go see our pediatrician when we got home on Thursday.  The fact that he didn't think we needed to rush to the doctor calmed me immediately.  I gave Rhett another dose of amoxicillin and his bottle.  Yes, I said another dose.  If you're counting, that's 2 more SINCE the reaction began!!!  And if you're questioning the advice of my friend, don't.  I really think he thought (like me) it couldn't possibly be a penicillin allergy since he was on day 8 of his SECOND round of the drug, AND (like me) he thought that it must not be an allergic reaction if the benadryl hadn't helped.  So, I felt better about any immediate danger, but I still had to decide what to do about going to the doctor.  I still wanted to see Dr. Smith, but I was afraid to drive 5 hours with him in the back seat where I couldn't see him.  He was still acting like he felt fine, but he looked terrible.  I called Brad to see what he thought. He agreed that I should NOT take him to any doctor in Hope.  He thought I should take him to Texarkana or Little Rock.  It's so hard to know what to do when you're needing a doctor when you're out of town.  Who will see you?  When will you get in?  Will they take your insurance?  Can you trust them?  We loved our pediatrician in Little Rock, but we probably hadn't been there in 2 years.  And Little Rock has Arkansas Children's Hospital, which is the best in the state.  I would have gone there, but it was 2 hours away.  If I was going to make a 4 hour road trip, I wanted to just go 5 and be home, with Dr. Smith and Blaire E. Batson's Children's Hospital in Jackson.  So, I decided to call my best friend and ask her about her pediatrician in Texarkana which is only 30 minutes away.  I called the clinic at 8:45 and got an appointment at 9:30.  That was getting there an hour early to register as a new patient, and our appointment time was 10:30.  I threw on some clothes and makeup, and Rhett and I took off.  I left Mary Ella with my mom.  On the way, I called Cole and asked him to meet me in Texarkana for the appointment.  He was there when I got there and helped with Rhett while I did all the paperwork.  The rash was only getting worse.  It was spreading and looked very red and inflamed.  It was hot to the touch.

This is what Rhett looked like at the doctor's office.  Pitiful.  He looked so bad that the nurse paraded him around the office showing it to everyone.  The doctor came in before I had even finished filling out paperwork.  I gave him my spill, and he said it was an allergic reaction to penicillin.  He chuckled when I told him about the 2 extra doses of amoxicillin.  I felt like an idiot, but I was so relieved to know what the heck was going on!  He handed me a prescription for Hydroxyzine (generic for atarax which reduces activity in the central nervous system, also acts as an antihistamine that reduces the natural chemical histamine in the body and is used to treat allergic skin conditions).  He talked so fast that I had to have him repeat the directions, and then I even had the pharmacist repeat them.  I'm looking at the bottle now and it says, "give 1/4 teaspoon by mouth every 4-6 hours and 1/2 teaspoon every night at bedtime as needed for itching."  I didn't think he was itching, but if he could have 1/2 teaspoon I wondered why I would give him 1/4...can't you see what he looks like NOW?  I didn't say that out loud, only in my head.  But he said the 1/2 teaspoon at night would help him sleep.  He said I could bathe him using an oatmeal bath and to only use nonscented soaps and lotion.  I think I had him repeat that part also.  He also quickly mentioned watching for swollen joints, puss in the eyes, and sores in the mouth.  I made a face at Cole because that kind of freaked me out. Then he was gone, and we were out of there before our appointment time of 10:30.  I felt better, kind of.  I threw out a comment/question to Cole as we got into the car.  I said, "Do you always believe what a doctor tells you?"  He said no.  I guess we were both skeptical.  I also thought it was weird that he handed me the prescription instead of calling it in.  I guess that goes with the territory of going to an out of town doctor and using a different pharmacy.  I tried to be thankful he was able to be seen quickly, we knew what it was, and that he didn't act like it was a big deal.  Cole and I drove to the nearest Walgreens to drop off the prescription, and it was going to be an hour and a half before it was ready.  Geez!  I should have taken it somewhere else, but we dropped it off and went to lunch at Amigo Juan's while we waited.  He was fussy at lunch until he went to sleep, and then he slept all the way home.

This is what Rhett looked like when we got back to my mom's.

Still my sweet happy boy.  I gave him his bottle and gave him a nice oatmeal bath.  We played for a while, and he started to act sleepy so I layed down with him in bed.  He wasn't looking any better.  I got up when ME woke up from her nap, and he slept until about 4:30.  Still didn't look better, only worse.  The rash looked more angry and red.  Mama needed me to go pick up Nanny and Pa's medicine at the drug store by 5:00.  When I came back he was playing in the pack n play with toys.  Mama was watching him.  I got him out to look at him, and his poor little feet and hands were swollen.  The spots appeared swollen too, so much that the centers were white...I thought from the skin being stretched.  I'm looking at the clock wondering what to do now.  It wasn't quite time for another dose of the medicine.  I wanted Jenn and Cole to get there, so she could see what he looked like now.  They came in about the time Rhett started to get fussy.  I had Mama call one of her friends that is a doctor.  Cole called one of his friends that is a doctor.  He handed the phone to Jenn and both Mama and Jenn were on the phone describing the situation and what Rhett looked like now.  One of the doctors said that the dosage of medicine he was prescribed wasn't enough to do anything.  No, nothing I had given him was doing anything!  The words "stevens johnsons" were thrown out.  We were all in the kitchen now, and I started to make Rhett a bottle.  Cole was holding him, and I didn't like the way he was looking.  His feet and hands were so swollen that they were starting to turn purple.  He started yawning and his head was drooping like he was going to go to sleep.  I got him and stood him up on the counter.  Mama and Jenn were still on the phone.  I was scared he was having trouble breathing, not gasping, not wheezing, but I was afraid he was going to pass out or stop breathing.  He looked so pale.  We had no choice but to take him to the ER in Hope.  Calling 911 would have taken longer because the hospital is right around the corner from my mom's house.  I tried to be calm, but it was so scary.  Mama and I got in the car.  She was in the driver's seat, and I got in the passenger seat with Rhett.  I screamed for Jenn to get in the car because I couldn't remember a thing from my infant CPR class.  She threw Mary Ella in her carseat and Cole tried to fit in the back, but there wasn't room, so he said go and I'll bring my truck.  I remember ME all the way to the hospital yelling that she wasn't buckled.  Jenn was still on the phone and she kept saying, "it's okay baby" to Mary Ella.  I was holding Rhett, facing me.  Talking to him and doing everything short of shaking him.  I know I said a prayer on the way out of the house, but the only thing I could think on the way was, "I don't want to take him there!"  By the time we got to the hospital, very shortly, he seemed better.  But oh, did he look horrible.  The following 3 pictures were taken on my mom's cell phone.  I never took any when he was at his worst. 

Mama took this picture to send to her doctor friend in the kitchen right before we went to the ER.  See the one that looks like a target?

Right before we took him to ER.

Checking in at the ER

We got in very quickly. The doctor on call saw us from behind the counter and said, "We're going to get him a steroid shot, and that will help immediately."  Rhett's pulse ox was fine when the nurse checked it.  His breathing sounded good, no wheezing.  I went through my spill again as the doctor examined him.  He was concerned with the spots that had the white in the middle.  They looked like the bulls eye of a target.  This is why he and the doctor my mom sent the picture to were concerned about Stevens-Johnson syndrome (a rare, serious disorder in which your skin and mucous membranes react severely to a medication or infection. Often, Stevens-Johnson syndrome begins with flu-like symptoms, followed by a painful red or purplish rash that spreads and blisters, eventually causing the top layer of your skin to die and shed. Stevens-Johnson syndrome presents a medical emergency that usually requires hospitalization).  He was looking stuff up on his phone, and flipped through some pictures for me to see.  Um, yeah, scary.  Don't google it unless you want to have nightmares.  This is about the time Mama asked if he had any children.  And he did.  She asked him if he would have his kids treated here or take them to Children's Hospital in Little Rock.  (Don't worry Mama, I was already thinking of asking for an ambulance or helicopter or something to transport us there.  NO WAY was he being admitted for a serious skin disorder at this hospital).  He said he was calling in a pediatrician to look at him, and that if they had any doubts about what it was that they could do a video conference with the doctors at Children's Hospital. I can't remember exactly when he got the steroid shots, one in each leg, but he screamed his head off until he fell asleep and then we waited for the pediatrician.  It was the first time he acted upset by anything that was happening, and I hated it because I knew the shots hurt badly.  But crying meant he was breathing, and that was just fine with me.  The pediatrician that came in was great.  He was very seasoned (old), so you knew he had been around the block a time or two.  He was great with Rhett, and I was praising the Lord when he diagnosed him with anything but Stevens-Johnsons.  He said that he had erythema multiforme minor.  It is a type of hypersensitivity reaction that occurs in response to medications, infections, or illness.  In his case, penicillin.  It is closely related to Steven-Johnsons, and the "minor" part meant that it wasn't affecting any mucus membranes.  He checked Rhett's eyes, ears, nose, mouth, and booty hole.  We didn't appear to be out of the woods yet, because we were told to watch carefully for any of the spots to blister and open.  We were told it might get worse before it got better.  He left, and the first doctor wrote us a prescription for something similar to what we got from the doctor in Texarkana (both were like benadryl), but with a higher dose.  He also wrote a prescription for zofran for his tummy because he had thrown up as I tried to give him the correct dose of the first medicine while we were at the hospital.  I never used the zofran because I didn't think he needed it, (poor thing puked because he was upset and crying when I tried to give it to him) and I didn't want to add another variable to our equation.  The doctor mentioned that he might need an oral steroid at some point in the visit, but we did not leave with a prescription for that.  I wasn't really comfortable leaving the hospital, because he had just thrown up and the steroid shots hadn't made him look much better.  It seemed like we were in a bad dream, but home we went.  Cole picked up the prescriptions, and I sat and held my baby looking for any improvement.  Mama and Cole and Jenn all kept saying he was getting better, but I was completely on edge.  I called Brad, and he said we either needed to get him home or take him to Arkansas Children's in LR.  Again, I wanted to be home so badly with Dr. Smith and Batson's Children Hospital in Jackson.  If he needed to be admitted it would be so much easier to be close to home.  I hadn't looked up anything on the internet, but Mama started researching erythema multiphorme, and if it turned into the "major" version we were in for what could be a lengthy hospital stay. I started him on the new benadryl, and set my phone alarm to give it to him in 6 more hours.  He was looking better at bedtime, but I was still so scared.  I asked Cole and Jenn to spend the night in case something happened.  I knew we would go to Little Rock if he got worse that night, but I decided if he was better in the morning that we were getting up and going home.  Mama agreed to ride back with us, so she could keep an eye on him in the backseat.  I got everything packed, so we could leave early.  Cole layed in bed with Rhett while I took my first shower of the day, approximately 10:30 p.m.  What a day!  And night!  I kept shining my cell phone on him to see if he was worse.  I don't think I slept until after I gave him his next dose of medicine.  I could tell he looked so much better. 

This is what Rhett looked like Wednesday morning.  You can still see where the rash was, but it was a different, almost brown color.  We decided to head to Jackson.  I called Children's Medical Group and made an appointment for 2:00 that afternoon.  I gave Rhett another dose of his medicine right before we left.  ME and Mama watched movies in the back while Rhett slept a little and played a little.  He was dressed in pajamas, so was ME, but we opened up the feet so Mama could see what his skin looked like.  I kept asking what he looked like.  He started to fuss about the time we got to Ruston, which is almost to Monroe, LA, which is halfway.  It was time to stop for a bottle anyway.  Mama said he was looking red, like he felt hot.  I kept on driving to Monroe, and Rhett kept on fussing.  She said his feet looked like they were breaking out again.  By the time we got to Sonic in West Monroe, he was breaking out in the rash again.  It was red and hot and his feet and hands looked swollen again.  Nothing like the night before, but I had to make another dang decision about what to do on the road...this time literally.  It wasn't time for his medicine yet.  I gave Rhett a bottle and called my nurse and told her what was happening, and she said if he were there they would probably give him another steroid shot.  She said they could call him in a steroid to a Walgreens there, and I could give it to him and still try to make my appointment time.  I didn't know what street I was on or where a Walgreens was.  She found 2 Walgreens in West Monroe, and as I was walking toward the road to try to see a street sign, I noticed there was a Walgreens right beside us.  Hallelujah!  She said she would call it in to that one.  I sat down outside with Mama and ME and considered ordering some lunch.  Mama thought his hands and feet were turning purple again...I didn't think it was like the night before, but I was getting really worked up.  I immediately took Rhett in his diaper over to Walgreens, to see if the prescription was there.  I interrogated the poor guy at the counter.  It wasn't ready (of course), because it hadn't even been called in yet.  They were looking up stuff in the computer, and I thought about calling the doctor's office.  But I kept looking at Rhett, and I knew he needed more steroids fast.  And I really didn't want to get to the point of being worried about his breathing again.  But what the heck kind of hospitals do they have in Monroe, Louisiana?  So I called Brad to see what he thought, and he basically said he couldn't judge the situation without being there.  I knew he was right, but I was tired of making these decisions by myself.  He wondered if maybe the Monroe hospital was bigger and affiliated with LSU.  So, I interrogated the Walgreens guy again.  I never left the consultation window.  I asked for directions to the nearest hospital.  Then I asked which hospital was better, Monroe or West Monroe.  Then I asked for directions to the nearest, and then the best.  I kept looking at Rhett and wondering what to do.  The guy asked another pharmacist to come help me.  I know he thought I was a crazy lady, but he could also see what Rhett looked like so he tried to be helpful.  I just wanted to scream, "give me some steroids!"  The next lady was very patient, and I tried to calm down long enough to listen to her.  She wrote down directions to the West Monroe hospital, and off we went.  I drove this time, and Mama held Rhett for his second ride in the passenger seat with no seatbelt.  I turned on my flashing lights, got back on the interstate, and tried not to scare Mary Ella and drive like a crazy person.  It wasn't far.  Rhett's breathing was fine on the way to the hospital.  I told Mama to stay in the car with ME, and watch a movie.  So in I go to check Rhett into the ER by myself.  I had to wait a little while this time, and I could tell the rash was getting worse. He had brand new ones on his face and back, places it hadn't spread too yet.  Some of them looked like the little red bumps from the beginning.  I finally saw the nurse, and his pulse ox was fine again, no wheezing.  I don't really know what was going on with his breathing the night before, but I'm glad I never saw that again.  I explained everything to the nurse, and then to a nurse practitioner, and then to another doctor.  The doctor barely spent any time with us, but he said he was calling in a pediatrician.  If you're counting that's 5 doctors in 3 states in 2 days.  It seemed like it took forever to see the pediatrician.  This time it was a lady, and she was great too.  She agreed that it was erythema multiphorme minor.  She took her time with us, and I appreciated that.  She said that he needed another steroid shot and to be on oral steroids twice a day for 5 days.  We also needed to keep giving him the prescription benadryl every 6 hours.  She seemed more concerned about him than any other doctor which made me worry.  She thought that it might get worse before it got better, but she said we should be fine to travel another 2 hours and see our doctor in the morning.  I think she thought it would be a good idea to be close to a children's hospital.  I asked her lots of questions, and then went over everything 2 more times with the nurse practitioner.  They did bloodwork on him and nothing was elevated that they didn't expect to be with his reaction.  I was pleased with the care we received except that we waited forever to get the steroid shot.  New bumps just kept on popping up.  We were still waiting for the shot when Brad arrived.  He had decided to come and meet us there, and help us get back to Jackson.  ME and Mama spent half the day at Chick-fil-A because it got hot in the car.  We finally got a steroid shot around 3:00.  We could have made it safely to our doctor's appointment in Madison, seen Dr. Smith, gotten a steroid shot, and been home in the time we spent at the West Monroe ER!  Again, I guess that's what you get when you're not a regular patient...maybe the doctors we were seeing were treating him conservatively all along?  Anyway, I didn't know what was going to happen when he started breaking out again, so I made the safest decision I knew to make, and that was take him to the nearest hospital.  We probably walked out of there at 4:00, rounded up ME and Mama from their play day at Chick-fil-A and headed HOME!  I was exhausted!  On the way home I made an appointment with Dr. Smith for Thursday morning, and Brad picked up the steroids. Poor baby boy would be drugged for the next 5 days...2 steroids and benadryl every 6 hours around the clock.  He slept with me for almost 2 weeks total.  That night Brad stayed up with him to watch him and give him meds while I rested. Rhett continued to sleep well, but did alot of kicking and shaking his head in his sleep.  I don't know if he was itching or hyped up on steroids.  The only thing he ever scratched were his ears.   

This is what Rhett looked like Thursday afternoon.  We went to see Dr. Smith that morning, and he agreed that it was erythema multiphorme minor, a severe allergic reaction to penicillin.  He agreed with the steroids and benadryl regimen we had already begun.  He really tried to make me feel better because I was almost to my breaking point when we finally got to see him.  This whole thing was personal to him too.  He said that his grandson had the exact same reaction to penicillin, only he looked worse.  He said it happened the first time he took it, and the drugs were stopped immediately.  But he still ended up looking as bad as Rhett did.  He said the dosage didn't matter if he was going to react to it.  He said that anyone can react anytime, anyway to different things.  He also said that his grandson was fine, and that Rhett would totally recover.  He was not worried about it blistering, did not think it would turn into anything else. He might break out again, but the steroids should do the trick. Oh, sweet relief!  And maybe a little hope that it wasn't all my fault!  But you better believe I was still watching him like a hawk!

Thursday afternoon, I was concerned that Rhett's tongue was swelling, so I took him back to see Dr. Smith.  So thankful he's right around the corner!  He said he was fine!  I still believed it was a little swollen (see in the picture), but his breathing sounded fine so we went home.

This is how Rhett looked Friday morning.  Better, but the rash was still changing.  He would flare up before time for his next dose of steroids.  Oh, the steroids!  The good news is they made him hyper enough to decide to roll over on his own.  The bad news is that it made him hyper and hungry and restless.  If he hadn't had the benadryl to counteract I don't think he would have ever slept.  He was like a little hulk baby!

Friday, Rhett did well, so Brad decided to drive Mama back to her house.  Would you believe that as soon as they left, he broke out again (above)?  Yep, right before steroid time.  Anyway, Brad took ME with him, so Rhett and I had a cozy and cuddly night together.  I was beginning to think this kid was going to be spoiled rotten by the time this was all over.  I babied him some more over the weekend, and I finally got out on Sunday to attend the shower I was supposed to be hosting at my house...thank you Mrs. Billie for taking that burden!  I was feeling like everything was going to be okay, but I was nervous about Monday.  Brad had to go out of town for the night, and Rhett was going to be taking his last steroid dose that morning.  I was so worried that it might start all over again!  But it didn't.  He was all clear, but we had our roughest night Monday night, a full week after it had started.  Poor baby couldn't sleep.  He would cry out, go back to sleep, and then kick about and wake himself up.  He also kept scratching and grabbing his ears.  I was afraid he was in pain from the ear infection (how this all started) or maybe it was his reaction to coming off of the steroids.  I finally gave him a bottle, and we both got some sleep from 5-7 am.  So, Tuesday we went back to see Dr. Smith AGAIN!  His ears were clear, and he said it was probably him coming off the steroids.  Those things are rough on a little guy!  We stayed in for most of the next week, because I knew we needed to keep him out of the sun and away from anything contagious.  Needless to say we will NEVER be taking anything else with -cillin in it and will be very conscientious when introducing any new thing into his little system.  So...if you're still reading, just a little recap of a few things you can learn from our experience.  If you think your kid is having an allergic reaction:

1. Don't be out of town, especially not out in the country.
2. Don't ever leave the benadryl at home.
3. Don't assume it's not a drug, even if the drug is not new.
4. Don't give additional doses of said drug.
5. Don't mess around with pharmacists.
6. Don't pretend to be satisfied with a doctor's visit if you're not.  Especially when it comes to your children.  You are their only advocate, and you're paying for that doctor's time whether it's your primary care physician or not.  If you don't feel comfortable with advice or a diagnosis or treatment, don't leave with your child until you do.  My family is notorious for throwing fits at hospitals and doctor's offices when things don't suite them (maybe because they live near Hope, AR and the medical care really is questionable), but I think I try to over-compensate for that.  I tried to remain calm, and listen, and not go into crazy mama mode throughout this whole experience, but I should have spoken up and voiced my concerns or questions on more than one occasion.  What if I had asked the first doctor for a shot in the office?  What if I had given him a larger dose of benadryl?  What if I had asked about the oral steroids in the first ER visit? 


So many what ifs have been floating around in my head!  Maybe I can put it all to rest now, and maybe you learned something. 


The End