Tuesday, December 9, 2008

The rest of the story on Antibiotics..

I mentioned in my post about Allie's ears that antibiotics weren't necessarily a good thing. People were emailing me telling me that they worked fast and things would be so much better in a couple of days...let me give you alittle background and my comments will make alittle more sense.

When Jacob was 18 months old he had a sinus infection and his doctor put him on Omnicef. 7 days after he started the antibiotic we were at Sam's shopping...as I was putting him in his carseat I his shirt came up a bit and I noticed he had what looked like hives on his stomach. I immediately called the doctor and they told me to skip a dose of his medicine and give him Benadryl. I did that and we put Jacob in the bed with us that night. We woke up in the middle of the night to check on him and his entire body was covered from head to toe. He was swollen and it was absolutely the nastiest thing I have ever seen in my entire life. I had to turn the light on to make sure I was seeing right because I just knew that there was no way what I was seeing was actually happening. When the doctors office opened the next morning I was waiting on the doorstep..no call..no appt..nothing. Our doctor walked into the room and immediately knew what it was. She said he has Erythema Multiforme which is a form of Stevens Johnson Syndrome which was followed by her going and getting a textbook to show me pictures and research. She immediately told me that it was going to get worse before it got better and whatever I did to not go home and look on the internet...now honestly you tell me if you walked into the doctors office with your child and they were diagnosed with something you had never heard of would you go home and look it up..especially if they told you not to(that made me want and need to even more)! The last thing I asked her before I left that morning was whether or not he would be okay..I thought if he will be okay I can make it through anything. She told me she didn't know. I almost collapsed right there. David was with me thank goodness and I think I cried the entire way home. They put him on steroids and high pain medication and told us to keep him medicated around the clock. If we saw blisters or peeling to go immediately to the childrens hospital(which thankfully we have around here).

The next two weeks were spent back and forth constantly to the doctors office. David and my mom immediately took off of work. David told his job that he had no idea when he would be back and thankfully they told him to take as much time as he needed. My mom was with us for whatever we needed. My dad and stepmom took Lucas to stay with them so we could concentrate 100% on Jacob. We put a mattress in the floor in the living room and that is where we stayed. We took care of him for those two weeks not knowing if he was going to come out of it or not. It was honestly the worst experience of my life!

After going through that and learning more about SJS I found out that after Jacob had it that he could get it again...he could get it from another antibiotic(even one that he had taken before and not had any problems)..because get this before he broke out from the Omnicef he had been on that exact same medicine before. He could even contract it from a virus. There was no way to know if and when it would happen again and what would happen if he did get it.

I was completely against medicine...I would take him to the doctor but I wouldn't let them give him anything. We only used medicine in the most emergent situations. I wasn't taking any chances. We only did tylenol if needed because Motrin is another medicine that is sometimes associated with SJS.

Fast forward present day five months ago...I took kids to the doctor and Jacob had balitis..which I had never heard of either. Caleb had a sinus infection and Allie had her first ear infection at 4 weeks. Our doctor told me we had to do meds..that we didn't have a choice. Jacob absolutely had to have them, Caleb needed them because his sinuses had been messed up for weeks with no improvement and Allie was absolutely too young to fight off an ear infection by herself. We went forward with what she thought was best. Of course she assured me that it would be okay(what else should she had done..she had no way to know). 7 days later it happened again to Jacob...I called David at work crying. I couldn't go through it again..I couldn't lose him I just couldn't do it. Back on steroids and pain meds and David back at home with me. 4 days later Caleb started...I couldn't handle anymore of it...two kids with something so rare in the same family? Everywhere I had read and researched they said that it wasn't genetic and that it just didn't happen twice in the same family. Our doctor was shocked..she had never seen it either. I immediately took Allie off her meds...I wasn't giving her another dose. We started Caleb on the meds too.

Thankfully neither Caleb nor Jacob ever got blisters or started peeling. If that happens they send you to a burn unit and have to treat you as a burn patient. There is no treatment for SJS...steroids are highly debated when it comes to this disease. Some doctors say it works but many don't. Thankfully our doctor gave it to us! They say this is not genetic but I swear you can not convince me of that....there is just no way around it. SJS almost always breaks out anywhere from the 7th to the 10th day of taking meds and it doesn't have to be antibiotics also doesn't have to be something you have never taken before...remember Jacob had taken Omnicef previously to getting SJS the first time. We are incredibly lucky to have such a wonderful doctor..many and most doctors have no idea what it is when they see it. I won't see another doctor to this day...I'm sure they think I'm a hateful witch when I call in and they tell me she's full..honestly I have her home and cell number :) Lord I love her!!

I am a huge advocate for not medicating children from the word go. Many people walk into doctors offices and want something to fix the problem immediately. I understand wanting them to feel better but I have also learned first hand that most ear infections and sinus infections can be fought off by your own body if given the chance. I love those earache drops you can buy at the store and we use a lot of saline if needed along with Tylenol. Of course every parent has to make their own decision and I would never judge another for doing what they think is right for their own children.

So now you know...I hate antibiotics!!!! I can't stand them..each and everytime I put a dose in Allie's mouth right now I am terrified. I am constantly searching for spots on her body and wondering what is going to happen. Ugh...they are my worst enemy!

16 comments:

Windy said...

I don't blame you! I wouldn't want to give them antibiotics either. I hope you don't have any more problems and that everyone gets better soon!

Julie said...

Wow! I am SO sorry! I've never hear of SJS. How terrifying!

I've just been weary of antibiotics, b/c taking too many is bad and doctors prescribe them too easily.

I'm glad you posted the story to educate parents about that.

Amanda-The Family News! said...

WOW! That is scary. I would be very weary of giving them anything too if I had been through something like that - especially not knowing if it would happen again.

Alicia said...

Oh my gosh, girl..I don't blame you one bit!! I totally understand your hesitancy to antibiotics. I'm like you in the sense that I don't believe running to the medicine cabinet everytime my child feels a little pain. I'm even opposed to some of the immunizations! Why would I want a virus shot into my kids body? Who knows what the effect it will have down the line? Anyway..you get the picture. I think we all do what we feel is best for our family, and that's all that matters!

I've never heard of SJS either, and I wouldn't take "man's" word that it's not genetic. Doctors have wisdom, but they are not always right.

HUGS STEPH!!

Lori said...

that is so scary... I wouldn't blame you for being leary either

He And Me + 3 said...

Yikes, i hate meds too. I am one to hold off til the very last second. Only when necessary as well. The body is made to heal itself, and their are homeopathic methods to help that along. We love the health food store. Praying for your baby girl.

amanda said...

wow. thanks for sharing that story. praying everything stays fine!!

All these B's and Me! said...

Something for you on my blog - thanks for being such a great blogger friend.

momstheword said...

Oh my goodness! I had never heard of such a thing! You poor thing. My kids never had any trouble so I can't imagine the terror you went through. Hugs!

Liz said...

holy cow! what a story! I can understand why you don't like antibiotics. hope everyone feels better soon!
liz

Ice House said...

I am so thankful that your children are doing well after such a scary experience. I would run from antibiotics, too, given your past.

Everyday Mom Designs said...

Wow, omg.. That must have been terrifying.. I don't think I could have handled that.. Geez, how scary. I understand why you are so against medicine now. I would be too!

This will be an exciting Christmas for you! How fun!

Oh yeah, Leala refused to take any juice or water today and didn't eat much of her cereal and pears.. ugh..

McCrakensx4 said...

Oh my goodness, how aweful for you to go through something like that more than once. I hope all goes well with Allie. When Brendan was 4 mo-18 mo, he had constant ear infections and we finally got him to a family chiropractor and with kid sized adjustments, his ear infections stopped without meds! I am like you, try not to give them to them if they don't need them.

Everyday Mom Designs said...

Yay for that! :)

Eyeglasses & Endzones said...

I can sympathize for sure. Hope she is feeling better soon.

jkear said...

You might try and EarCheck (www.earcheck.com) to assist in diagnosing and monitoring an ear infection. It is a great little tool; I used it last night and it works. If confirmed an ear infection so I gave her some Tylenol to sleep and then went to the doc this morning who confirmed it. I am going to monitor whether it gets better (which it usually does) before getting antibotics. No more unnecessary trips and co-pays. It is great peace of mind!