After our first meeting with the sleep medicine doctor we had a sleep study done. Today, 6 weeks after the study, we finally got our results and the doctor’s diagnosis.
In summary, all of her results were a little off, but not shockingly so. Please forgive me, as I’m speaking from memory as I didn’t get to keep a copy of the results yet. A number related to how often her airway was blocked during sleep should have been under 2, it was 2.6. Her oxygen stats dropped to 76%, which is far too low, but only once. Her limbs were more active than normal, but not too too far out of normal.
The doctor’s diagnosis: Baby Love is waking up screaming in pain or with pain cries only because she is manipulating me and has learned that gets a response (even though I respond if she’s wide awake without screaming). So I just need to leave her to scream because that will “teach” her to self soothe (even though when she doesn’t wake in pain she can self soothe).
So glad I drove a half hour each way to hear that.
The appointment started out with her asking me if Baby Love was falling asleep on her own yet. I said no, but that she could self soothe at night. The doctor was unhappy. Then we went over the results.
She suggested Baby Love was just screaming because she was demanding and wanted a response. I said that 1) she is not a screamer and rarely tantrums, something we regularly get comments on and 2) I know the difference between a pain scream and an annoyed or upset scream, and that she was waking from sleep screaming, not starting once she was awake.
She suggested that Baby Love might just be over sensitive to pain so there wasn’t really anything wrong. I said that she was an extremely tough kid who did not cry at nothing, and told her that just in the last hour on the way in Baby Love had face planted on the carpet and calmly gotten back up and kept walking and while we were with the medical assistant Baby Love had crawled under a hard plastic chair and then stood up, banging her head, then calmly worked herself over until she was clear and could stand, so I didn’t think she was pain crying at minimal pain.
She then said that maybe she was not sensitive enough to pain, which can evidently cause sleep issues as well. I’m looking into the type of work one would do with a kid who has SPD to help them sleep, especially heavy work, since this is the only thing that made any sense to come of the appointment.
When we were talking about why Baby Love might be waking up in pain or discomfort she said that she did not believe Baby Love was really in pain because I reported that she was happy during the day. “Why would it hurt worse at night?” I just kind of stared at her, but what I wish I could go back and say is, “Are you kidding?” Every illness, pain, and discomfort is worse at night. Circadian rhythms. Not being distracted by activity. Prolonged periods of lying prone. All make night the worse time for these discomforts. I’ve experienced it, our regular pediatrician has talked about it, how on earth could a sleep medicine doctor dismiss it? Further, Baby Love has always been happy during the day, even when we know she is in horrible pain. When she had a raging double ear infection that her mom didn’t recognize because Baby Love was unfortunate enough to be first born and would scream in agony every time she was moved slightly horizontally at night, the next day at the doctor’s office the friendly receptionist said, “You can’t be in pain, look how happy you are!” as Baby Love smiled and cooed at her. Everyone was charmed by her happy disposition. Then the doctor looked in her ears and was amazed at how horribly inflamed they were. So yes, my child can be in horrific pain at night and still be happy during the day. I think that’s pretty darn amazing of her, not a reason to dismiss her pain.
Overall, it was clear that the doctor’s view was that Baby Love’s sleep problems are my fault. I spoil her. I respond too quickly. I refuse to “teach” her to self soothe by leaving her to cry alone. Ignoring that I have done everything “right” since day one and tried everything under the sun to get her to sleep short of cosleeping or CIO, she doesn’t have a breathing problem so it must be my fault.
I’m frustrated. I’m discouraged. I’m defeated. I don’t know how long I can keep telling people that something is wrong when the proof is all so intangible and the assumption is always that I’m a naive first time mom who is just being overprotective.
Maybe there really is nothing wrong. Maybe she’s just not a heavy sleeper. Maybe I should leave it alone.
I want so badly to do right by Baby Love, but I’m not sure what that is any more.