Long battle with staph

10:10 PM Edit This 4 Comments »
I think when Lo was about 13 months she got her first staph infection on her bum. I thought it was just a diaper rash but a pimple developed and grew and grew and then she got little pimples on her tummy and she got a fever. I took her to the doctor, they did a culture and we found out it was staph. The doctor gave us antibiotics and a cream to use for a few weeks and we were on our way. No more than a week after the antibiotics were done she got another bump. This happened like clockwork for the next few months. After 4 episodes, I started to worry about giving Lorelai so many antibiotics and the treatment was clearly not working. I repeatedly had discussions with the doctor about different treatment options, preventative treatments and he had no suggestions or options. It's not just antibiotics that worry me. Every time she got the infection it had to be lanced and the infection squeezed out. This is not a pleasant experience for an adult I would imagine, but 10 times worse for a one year old. I hated to hold her down as she has a mass on her bum cut open and squeezed. It broke my heart every single time. Not to mention that staph is a very serious infection that has killed a number of toddlers. It scares me to death that she has been getting this infection once a month.

That's when I started looking for another doctor. I talked to a family friend who is a doctor and he explained that if it were him he would try a number of different things. It was then that I lost all faith in doctors and finding a definitive answer in any medical treatment. I decided I needed to advocate for my own childs health. I had to fight and I had to learn all about how to get the correct medical treatment. I decided first of all to drop the pediatrician and to take her to my general practitioner that I really respect and adore. She immediately referred us to an infectious disease specialist and ordered blood tests to see if she had some sort of autoimmune deficiency.

The blood tests were awful. The first try the nurses couldn't get a vein and poor Lorelai was poked and prodded for 10 minutes before they asked us to come back when another nurse would be there. I brought her back when the bruises healed and although still traumatic, they were able to get the blood, which came back fine.

We went to the infectious disease doctor and again, he didn't have too much insight. He explained that because it's on her bum and that area is warm and moist, it's a breeding ground for bacteria. A lot of the population is a carrier of staph but live completely normal, healthy lives with no complications. Lo has it on her skin but for whatever reason is not able to fight the bacteria. So as soon as she is potty trained the problem should go away. In the mean time we were given Bactroban cream to put in her nose for 7 days (that's where the staph bacteria grows) and for 30 days on her bum.

A few weeks after leaving the specialists office, she got another bout of infection. I called the infectious disease office and they wrote her for another antibiotic and were told that the cream probably did not have time to work.

Well this passed weekend I noticed a little bump on Lo's lower abdomen. That was Saturday. I thought it could be another staph break out, but because it was on her tummy I thought maybe it was just an irritation. Well, 5 am on Sunday morning she woke up crying. I went in and immediately felt she had a fever. I got her out of bed and gave her some tylenol. I changed her diaper and noticed that the little bump was now 10 times bigger and very red. I waited for the tylenol to kick in and put her back to bed until it was a better time to call the doctor. Just in the 4 hours from 5 until 9, that bump had gotten so large it was scary. I called the on call infectious disease doctor and he advised me to take her to the e.r. Since her fever was 103 and it was rapidly growing she needed to have it lanced immediately. I showered while Ty packed activities and snacks because he was convinced it would take hours to get out of there.

Didn't take long at all! They must have had concern as well because there were a few people in front of us, but they took us back first. The doctor agreed we needed to lance it. He asked if I wanted her to have a sedative, but because she had eaten something that morning she could vomit and get pneumonia. I decided against that and went with a local anesthetic. He then asked if I wanted to be in there helping or if I wanted to go in at the end and be the superhero.

This to me... is always a tough one. With having a child this young, you never know if they see you when these procedures are happening to them and blaming you or whether they are just happy you are there to be with them through it. I still, obviously, have no idea... but I just always think about these doctors and nurses that don't know her, that don't know how special she is, crowding around her and taking knives to her without me there. How scary that would be for her. Not only is she getting cut open, but her mommy isn't even there. This is how I ultimately decide every time. I could never leave her.

So long story short, they did get a culture and they did make a pretty large incision. It was much harder than the ones on her bum. Usually they take the head off it and then squeeze. This was anesthetic and a knife and a very large needle and scissors... don't even ask.

She of course freaked out, the only thing that stopped her from being a 10 freak out stage was me telling her we were going to get an ice cream cone. Every time she has to have something done that is her treat and she loves it. So I tried to talk to her and keep her as calm as I could. It was horrid and awful.

So where I am now is just bewildered. What do I do? We are at 6 infections, no one can tell me how to stop it, no one can tell me how to fix this... I don't know what to do. I know I don't want her to go through this anymore but I have no idea how to get to that point. Even on the internet I can't find an answer or a direction. We have another appointment with the infectious disease specialist next Monday. Clearly it's not because she isn't potty trained since this one was on her abdomen.

Anyway- I'll update after that appointment!


Shanna Bundy said...

My friends little girl had the same problem. I'm not sure how they finally kicked it but I will ask her and let you know. Be careful because my friend actually got it from her daughter. She got a huge open sore on her boob (sorry to get graphic). No seriously it kept growing and growing, eventually she had to go in to surgery and they literally had to dig out a big chunk of her boob. It was an open sore for weeks that her husband had to clean and pack with gauze every day for her. Now that side is much smaller than the other. It was terrible. Sorry, I guess that isn't very encouraging is it. I just wanted to tell you it is possible for you or your husband to get it. Her whole family had to scrub with that hibicleanse stuff for like a week. It was quite the nightmare for her. I will talk to her and let you know any advice she might have.

JamesHesch said...

ohhh... poor Lo! I feel so bad for her and you! I'm sorry Mist! That is horrible. I'm so sorry! I hope everything works out and they get it taken care of and fixed. Poor Lo, tell her I love her! She prob doesn't remember me but yeah give her a hug and kiss for me. I'm sorry Misty! I bet that can't be fun watching your kid go through that. I'm so sorry! Well, I hope everything works out and she gets all better! :) Love you!! & her of course! :)

Cazier Craziness said...

Crazy what Shanna said. It will be interesting to find out what happened. I hope they will tell you some helpful info at her next appointment. Poor thing.

ern said...

All I can say is I'm so sorry and good luck to you both. She seems to be such a sweet lil' one. Good thing she's got such a great mom to go through all of this with her. Best wishes.