Summer Struggles-Part 2

Unfortunately, since my last post Faith’s struggles continued. The extreme agitation, inconsolable crying, and rough nights left us very helpless, frustrated, and exhausted. I had been talking with neurology every few days trying to figure out what was going on with Faith as they were convinced that muscle tone was the cause of Faith’s discomfort. We definitely felt like that was part of the problem but we were not sure if there were other factors contributing to her distressed behavior.

Last Friday, Faith was having some breathing issues in which she was gasping for air at times. We ended up at her pediatrician’s office and then the ER. After the long routine that we are all too familiar with in the ER, Faith was admitted. The doctors were not comfortable with what they were seeing and put oxygen on her quickly. Faith was put on a respiratory floor so there was a pulmonologist who was primarily in charge of Faith’s care and treatment plan. Thankfully, he listened to our concerns and did his research on SOX2. He was eager to piece things together and made sure that Faith was seen by many specialties during her hospital stay.

For the most part, I feel the breathing issues that Faith was having were isolated from the other issues Faith has been struggling with for approximately 6 weeks. The doctors are pretty much in agreement that Faith’s Robinul dose was drying her up too much and was blocking her nose to the extent that her breathing was compromised. Robinul helps to reduce secretions and has been a huge help in preventing Faith aspirating her saliva and getting pneumonia. However, it seems that her dose needed to be adjusted to prevent things from getting so blocked in her nose. An ENT doctor also observed Faith and felt that Faith’s breathing patterns even further complicated the situation. Alone, her breathing patterns normally aren’t too concerning but when she is struggling otherwise they can complicate things. We have seen this before when Faith has any type of respiratory illness. Even though she was not experiencing anything viral, her body was very stressed from being so agitated. Her low muscle tone in her neck and trunk don’t help things either.

As all the specialists came in to see Faith, for the most part everyone deferred all of Faith’s issues back to neurology. We were a bit disappointed after talking with GI as they pretty much said that there are really no other options to treat Faith’s reflux. It seems that this is always going to be a struggle for her and that is just a bit hard to accept.

We saw many neurologists and it seems right now that the goal is to focus on the neurological system and do as much as we can to get it in control as much as possible. The doctors are hoping that we will see improvements with other systems if we can do that, even potentially the GI system. We started Faith on Gabapentin (Neurontin) during her hospital stay. She has only been on the medication for 3 days but I feel like it is very promising. I have been researching this medication for quite awhile now and have always wondered if it could help Faith. It is essentially prescribed for nerve pain but is often used in children with neurological issues. It can help with irritability and sleep.  Faith is doing so much better since she has been on it! She is smiling and her overall mood is awesome! We have not had any major crying episodes and sleep has improved ALOT! She seems so much happier and calmer. An added bonus is that the stress level in our house has reduced dramatically! I am hoping that happy Faith is here to stay and that we can continue to keep her comfortable!

Before Faith was discharged, we did find out that Faith also has a urinary tract infection. I am sure that this just added to her already irritable state and explains how bad last week was for her. The doctor said based on the bacterial growth that it did not appear that she had the infection very long so that in itself still points to the neurological issues being a significant cause of Faith’s distress.

Fortunately, Faith was discharged from the hospital on Sunday and was doing so well that she was able to attend her first day of school on Monday.

Faith’s First Day of School

Starting school is a big transition for all of us! We are sad to say good-bye to all of the wonderful therapists from the First Steps Early Intervention program that have worked with Faith during the past three years. At the same time, we are excited about new opportunities and experiences for Faith at school. So far, so good! I have been getting great reports from Faith’s teacher and therapists which makes me a happy mama!

Faith is such a little trooper! Despite all her struggles and challenges, she is so resilient and strong and makes me so proud!

I am really hoping that we are starting to make some progress addressing the neurological issues. A happy and healthy Faith is our goal and priority! We truly appreciate all the thoughts and prayers!

Keeping the faith,