February 15, 2019 Dr. Lovlie

Over the past few days, Annadelle has been fighting her first infection since her AFM acute phase. It is a sickness I have been terrified of for four months now.

We were able to see our new pediatrician today for the first time, although it wasn’t under the circumstances I had originally planned for. I had scheduled a wellness check for her after her birthday next month, but whatever respiratory illness she has changed out plans.

Annadelle’s new pediatrician is Dr. Lovlie, someone who was recommended to me by my friend Nicole. She also had several good reviews on a Google so I decided to give her a chance. She was drastically different than our former pediatrician, but I liked her no-nonsense approach. I could tell from the way she spoke about Annadelle that she had done some research on AFM, something I was appreciative of after months of having to explain myself over and over to numerous doctors.

Dr. Lovlie informed me that bronchitis could not be determined from an X-ray like I was lead to believe at the urgent care office we took Annadelle to yesterday. She said what was more likely was that she was showing inflammation of her bronchial tubes because she had read such in the radiology report from the urgent care, and that could indicate a slew of respiratory infections besides bronchitis. She took a nasal swab from Annadelle and told us she would send it off to see exactly what bug she had, but it would probably be Monday before she got any results.

She teetered back and forth as to whether or not she would start Annadelle on an antibiotic in the event what she had was bacterial. I told her that because of Annadelle’s medical history, I would be more comfortable if she would go ahead and start her on it and she agreed. So, Annadelle started Azithromycin today and will continue it until Dr. Lovlie tells me otherwise.

Once we got home, Annadelle continued to run high fevers throughout most of the day. I am praying these fevers go away quickly. The last time I could not get her fever under control, we ended up with AFM. I’m sure you can understand why this is so terrifying for me. I’m so ready to live a somewhat normal life instead of being around doctors 24/7.

I think I may have forgot to mention in a few of my recent posts that Annadelle is now completely off the Gabapentin. We requested to wean her off of it while we were at KKI, it realizing she was on the highest dose possible (6ml 3x’s a day). While we were weaning the medicine, we noticed a significant change in Annadelle’s mood. She was much more sensitive and cried at the drop of a hat. She also had several night terrors that appeared to be very vivid based on her reaction. We spoke to the doctors at KKI about this but they assured me it was not a side effect. However, I have spoken to other parents who said their child experienced similar symptoms when going on or weaning off Gabapentin. A few of the parents in the parent group have discussed creating an AFM wiki of sorts, and if they do I hope they include information about Gabapentin seeing as to how many AFM kiddos are on it.

Now that she is off Gabapentin, she is only taking vitamins and supplements. We have also started using helichrysum oil on her daily. We had done some research on it while at KKI and learned it is a popular oil used for increased circulation and possible nerve regeneration. We have also ordered lion’s mane but have not received it yet. Lion’s mane is believed to aide in the regrowth of myelin, which is what was damaged on Annadelle’s spinal cord.

I’ll soon be linking the items or products we use on our “about” page for those that are interested in ordering it for their child or loved one with AFM.

Our plan for the weekend is to rest, hydrate, and heal. Chris is also super sick so I’ve been playing nurse to both dad and baby girl. Thank goodness I’ve had my mom here to pop in and check on them, too, because it is exhausting. Thanks, mamma!

If you would, please say a prayer for quick healing for Annadelle. We are hoping this sickness subsides quickly so she does not develop pneumonia. I would also appreciate some prayers for the sale of our old home. It is currently under contract and we are awaiting the results of the home inspection. We really need our home to sell for many reasons, but mostly so I can buy a car! I haven’t had a car since last April when we were in an accident caused by a distracted driver, and obviously we need one now more than ever.

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2 Comments

  1. Chris & Shannon Wagner

    May GOD continue to provide all your needs: physical, emotional, financial, etc. We LOVE YOU ALL 🤗💞🤗💞🤗💞😇🙏😇🙏😇

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