Lila has been struggling with repeated infections since the beginning of November. She has had 4 sinus infections, strep, 2 staph infections and walking pneumonia. After her second staph infection in 28 days, I decided to make an appointment with an infectious disease (ID) specialist. They were shocked that we did not have a "referring physician". When they asked how I found their office, I told them that I had put infectious disease pediatrics into Google and their name was the first one on the list in our area.
After reviewing Lila's recent health history, the ID stated that something was attacking Lila's immune system. I went back and forth between feeling relieved that I had taken the situation into my own hands by following my gut and feeling sick to my stomach that something might be seriously wrong with our daughter. In the back of my mind I was hoping that the doctor would act as if she had no idea why we were there and send us on our way, telling us to follow up with our pediatrician. She did not.
After a thorough examination, the doctor said that Lila was at the beginning of another sinus infection. I told her that Lila was on day 9 of a 10 day antibiotic for a sinus infection. (During days 3, 4, 5 and 6 she was also on an additional antibiotic combined with a steroid for walking pneumonia.) She told me that the antibiotic wasn't strong enough, and wasn't for a long enough period of time, to knock out a severe sinus infection with the added complication of walking pneumonia. She put Lila on a stronger antibiotic, this time for 14 days instead of 10. (This also happens to be the antibiotic that gave Lila such severe diarrhea that she ended up on an IV in the ER for 7 hours as a result of dehydration and low blood sugar a little over a month ago) She asked if we would be willing to try the antibiotic again, stating that because Lila is allergic to 2 other families of antibiotics, we are running out of options. I hesitantly agreed, not knowing what else to do.
Tomorrow we will have Lila's blood drawn for a long list of tests. Right now we are just ruling things out, and I have to keep that in mind. It just sucks that the tests are for HIV, lupus, and a whole mess of other lovely options. (I lied, Kelly. I said that I wouldn't look at the list but I couldn't stop myself. I had to know.)
We will have a follow-up appointment with the ID in 3 weeks. Until then, we wait. And pray. And try to keep Lila as healthy as possible.
In the meantime, we have put Lila on a gluten-free diet. I have wondered for quite a while if she might have celiac disease. She has had 2 blood tests and both were negative, but sometimes those tests are inconclusive. She definitely has something attacking her immune system, which celiac disease does. Her behavior has also been a bit out of control which can also be another sign of a gluten intolerance. Thanks to a little nudge from my sister Donna, we decided to take gluten out of her diet for at least 6 weeks to see what effect, if any, it has on her health and behavior. (Wouldn't it be awesome if the answer was as simple as a gluten intolerance?)
When I told her teachers and therapists about Lila's new gluten-free diet, I expected some push-back but they have all been 100% supportive. They were giving me reasons why it's a great idea! And thanks to my awesome friend Michelle, I have learned so much about celiac disease in the past few days. I am so grateful for her knowledge and support.
Now you know what we know! I will post an update as soon as we know more. It will be nice to have some answers instead of worrying about all of the unknowns.
Please say a prayer for Miss Lila. She has been not felt well for quite a while and we are anxious for her to feel better soon.