Do you know that your gut has over 500 million neurons, over 40 neurotransmitters of the same type found in your brain, and that your gut plays a role in far more than just digestion? Have you heard that many in scientific circles now refer to the digestive system as our “second brain?” Your gut helps regulate your hormone levels and mental stability, and it helps you sense environmental threats and opportunities.
Why then is it so hard for many of us to learn how to trust our gut instincts?
For many of us, we allow fear to instill doubt: maybe it is a fear of judgment from people we care about, fear of failure, fear of just being wrong, or maybe it is fear of being a bad parent. As I shared in my earlier post, Listen to Your Instincts, NOT Your Instigators, I have been working hard to overcome these fears and listen to my instincts after a few life lessons where, had I NOT immediately listened to those instincts, it could have cost my children their lives. Even those lessons didn’t stop me from having to re-learn the same lesson recently. I quickly touched on our latest lesson before, and many of you sent emails asking for more details. Because I think my experience may help inspire some of you to move past your fears and trust YOUR instincts, I am choosing to share our latest story.
My youngest daughter, Jay, has been having sleep issues for at least 7 months. Initially she just told me she woke up a lot or had trouble falling to sleep. Later she shared that it scared her when she woke up like that. Then, one day I witnessed what we call an “episode,” and I sensed that it wasn’t right.
My pediatrician immediately sent me to the pulmonary and sleep disorder center, but that doctor felt it was merely anxiety. I considered that opinion carefully and honestly would have preferred it over another medical condition; but it just didn’t fit. Jay rarely worries about anything; and if she does, she verbalizes it or throws a complete hissy fit to get her feelings out. She certainly does not internalize.
So, I cashed in my trust card with my pediatrician and he talked the pulmonary doctor into at least doing a sleep study. From family and some friends I heard things like, “Oh, everyone has sleep issues, I am sure she is fine…why put her through unnecessary tests?” Some even ended that sentence with the word, “again.” I was starting to wonder if my husband and I were making a mistake. I even considered cancelling the test, but my husband reminded me that my gut was usually right and we should proceed.
It took me 3 months to get in for the sleep study. They called me shortly thereafter and shared that she had a “mild, non-obstructive sleep apnea,” and explained that basically they were not sure what was waking her but something certainly was at a time in her sleep cycle that was not normal. We at first felt comforted by the news, until we realized that the diagnosis merely acknowledged that something was not right, but didn’t pinpoint the cause.
We were referred to an ENT, who said her ears, nose, and throat were all perfect and he could not find a cause. We returned to see the specialist who felt again that maybe it was just stress-induced. As we were talking, I noticed a bullet on her results that read “abnormal EEG readings observed, follow up with a sleep deprived EEG may be warranted.” Believe it or not, the specialist was not intending to share that result. I had to point it out. He felt it was likely nothing and not worth testing for, until I reminded him that our daughter had two seizures as a baby that we always thought were medicine related, and that she was cocaine positive which is a risk factor for seizures. I also reminded him that we still did not know what was waking her at night, and this could help us either find the answer or exclude seizures as the cause. He acted as though I was crazy to even jump to seizures as a possibility, but still agreed to run it by the pediatric neurologist.
After weeks of not hearing anything, I called the office and inquired. They said they would get back to me. A week or so later I had to call again. I again wondered if I really should be pushing things since obviously none of her doctors seemed concerned. This time I received a prescription in the mail for a 24-hour ambulatory EEG, with no explanation as to why THAT test instead of the one we previously discussed, and no directions on what to do next. After I called to get that cleared up, the neurologist’s assistant informed me that it would be November before they could see my daughter.
Now, at this point, my mommy warning signals were screaming. My daughter is highly active in competitive gymnastics, tied for all-around gold in the state competition, and was scheduled to compete in Nationals. I didn’t want it to be seizures but was starting to feel that they may be the cause, and I was worried that IF she was having seizures and one happened while she was flying on a bar or upside down on a beam that the consequences could be severe.
I pleaded for an earlier date, but to no avail. My pediatrician pleaded our case, but to no avail. I called again, didn’t seem to be getting anywhere, and unexpectedly burst out in tears on the phone with the neurologist’s assistant: “Why does no one seem to EVER listen to my instincts with my daughter even after I have repeatedly been right? I NEED this test before she competes if for nothing other than our peace of mind. I will call every hospital in a five state radius until I find one that can do this test this month unless you help me. I am so tired of people treating me like I am crazy when I KNOW something is not right.”
As I rudely hung up the phone, I was embarrassed and disappointed in myself for losing the carefully practiced control I usually exude in these situations. But, much to my surprise, my tears accomplished more than I could have fathomed (I still don’t recommend it as a normal method of persuasion). An hour later, the office called and said the doctor would squeeze me in at the end of the next day. Once I spoke to her and she agreed that I had reason for concern, she squeezed me in for the ambulatory EEG the following day. And do you know how I felt? I should have felt relieved, but I didn’t. Instead, I was hit with a wave of embarrassment and guilt for possibly taking a spot from a more needy child. I mean, what if it WAS just anxiety? I shared my reaction with the doctor, and she reassured me that I had just the right level of concern and that I should never apologize for advocating for my daughter. If she didn’t feel the concern was warranted, she wouldn’t have scheduled the test.
~The results are in~
Unfortunately, it turns out my instincts were right…and I wish they hadn’t been. The test has shown that Jay IS having seizures emanating from the back of her brain. We go for an MRI soon to hopefully rule out a tumor or mass. It is possible it is a focal lesion from her biological mother’s cocaine use during pregnancy. However, the doctor is hopeful that it is just Benign Occipital Epilepsy of Childhood, the Panayiotopoulos type.
Now, I have to tell you, I am sad that I was right. I really would have preferred to be wrong. But ever since I saw that note on the initial sleep study report and read about childhood night seizures, I was fairly certain in my gut that this was the news I was going to hear. I tried to let the doctors words calm me when she said sometimes these things randomly happen and she didn’t expect to see anything since usually these abnormal waves never reappear. But, I knew. I cannot explain how I knew, but I knew.
Jay knew that it wasn’t normal and that it wasn’t anxiety too. She told me even before I listened. She tried to tell the doctor when we were in his office that she didn’t feel worried about anything. He then told her that she was a kid and could be anxious and not understand what that means, so she started to doubt herself. She started telling people she couldn’t sleep well and that “she guessed” it was because she worries alot. That is the saddest part to me. By allowing others to make me doubt my instincts, I almost taught my daughter to doubt her gut instincts as well.
I am so thankful that I didn’t allow others’ opinions and my fears to stop me from following my gut. We can now help our daughter overcome her latest challenge, because we know what that challenge is. Had we not pushed, Jay would still be waking up regularly in fear, feeling discouraged, and suffering the consequences at school and during her activities. Instead, her doctors felt we could safely allow her to compete since all seizure activity appears to be during sleep, and she won Gold in the all-around competition at her national meet (and one gold and three silvers in individual events as well)!
I am thankful to have such strong gut instincts. Now, I just need to learn to consistently trust them. I hope that by sharing our story, I will help inspire some of you to find the courage to overcome your doubts and fears so you can trust your gut more too!
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Disclaimer: I am not a Physician. I am a wife, a mom, a certified health coach, and someone who loves learning about natural wellness tools and sharing with others the incredible things I learn through my classes, research, personal experiences, and the experiences of friends and family. These statements have not been evaluated by the Food and Drug Administration. These products are not intended to diagnose, treat, cure, or prevent disease. Rather, they are intended to support your body in its efforts to restore balance and maintain health.