Thursday I took youngest to the pulmonologist. He was diagnosed in March with sleep apnea and this past Thursday, we went to the first appointment with the newest specialist.
Expecting judgement again, I steeled myself for this appointment. For years my youngest has been struggling with insomnia. He cycles through about 26 hour day. Sometimes he goes for a full 27 hours awake, sleeps for 5 and up again for 12. He’s ALWAYS done this, since he was a baby. Pediatricians have always said “it’s a phase” or “He’ll outgrow it” or “put him to bed and make him stay there” I’ve done everything they recommended, fought with him, lectured him, disciplined him, comforted him till I’M in tears to no avail. I’ve fired doctors who said it was my fault…. So I was expecting the worst.
Surprisingly, she was very knowledgable and compassionate, listening to the concerns and FINALLY agreed that something was wrong. She made different recommendations that no one had made before, including making the sleep ritual MASSIVELY different. She also said that it would help him if we got a light box to help his brain produce more Melatonin at the right time to help him sleep. She diagnosed him, tentatively with Non24 sleep disorder. Aparently, he will need the light box for his lifetime. The Melatonin we have to order specially from a website because they do quality control and has the best formulation for his issue.
She told us about how the sleep regulation will also help his type 1 diabetes get under better control and save him, down the road, from blindness, leg amputation and heart disease which are possibilities if we can’t get it under control. This is something even his diabetes specialist had never told us!
He has to go in for another sleep at the hospital to titrate him for a cpap but before then, he has to wear a monitor for 2 weeks to see exactly what his sleep is like, when he wakes and sleeps etc.
All this means for us is more doctors I have to take him to because his father refuses to go to ANY doctor appointments. In 12 years, he’s been to 2. When I told him about the things we needed to buy (of which only the Cpap is covered by insurance) He blew his stack. Yelling about how everything is too expensive, how we can’t afford this, how he can never get any money saved because people in the house are always coming up with something ELSE to waste money on… It wasn’t pretty and all it did was make my youngest cry because “it’s my fault I’m sick” How the hell do you counter THAT?
I waited til my husband went to bed and talked to my son about how it WASN’T his fault that he’s sick, that he doesn’t deserve to be yelled at like that and he called his father an asshole. I agreed with him. He asked me when I was going to divorce his father… I’m wondering that myself. Blaming a CHILD because they have health issues…. That’s pretty damned low. I think it’s time to start looking into getting out of this situation. Maybe then I’ll be able to figure out how to come up with the money to pay for needed medical care for my baby….