I don’t know if I should be comforted or frustrated by the knowledge that my instincts were right about the ENT. As Murphy’s Law would have it, Nik’s ear looked great and his tonsils seemed fine when the doctor got a good look. Well, hell, I’m not a doctor but I’m pretty sure that even I know that a week on heavy-hitting antibiotics might have some slight ameliorating effects.
The bottom line is that the doctor doesn’t think the tonsils are the problem and doesn’t want to remove them; he said he thinks it won’t give us the results we are hoping for and may make Nik’s oral motor issues worse. Now, here’s where the good doctor and I part company because I’m pretty sure he’s looking at this strictly from his little ENT-corner-of-the-world view while I am looking at the big picture.
To whit: Nik has a significant history of both cardiac and pulmonary disease or insult. He was a history of Failure to Thrive (FTT) and is still in the third percentile for both height and weight for his age with a body mass index of less than fifty percent. This child who used to sleep ten to thirteen hours per night without incident has not slept well in three years; the average amount of sleep Nik now gets is eight hours total —broken into three, sometimes four, segments. His longest stretch of sleep these days is about three hours.
My once placid and even-tempered child is now a whirling dervish with a recent diagnosis of ADHD. I’m not sure I buy that, really. Not as long as there may be any underlying pathology which may be treatable. And the long-term cost of doing nothing but medicating it and hoping it resolves itself is too great. The threat to Nik’s overall health and development is not insignificant; the toll on our family as a unit is beginning to show.
I’ve already got calls in to our fabulous pediatrician; I know I can count on her to go to bat for us if we need to be referred outside our state for a second opinion. Yes, one drawback to living in a small state is that all the pediatric otolaryngologists practice in the same facility. Apparently, they also all share one opinion among themselves depending on who’s on the schedule. But I digress.
Nik’s insurance demands that we exhaust all possibilities before they will deign to authorize an out-of-area office visit. That means our next step is requesting a sleep study. Call me jaded but I like to think of it as a sleepless study; let’s face it, there’s no way anyone can sleep “normally” when they’re in a hospital and wired to all sorts of machines —especially gadget boy Nik. But it’s one of the hoops we have to jump through before we can make any real progress.
Stay tuned…
Oh, honey. I’m sorry. Those @#$&*($@ are so narrow minded and predictable. I had a niggling feeling either a sleep(less) study or a CT scan would be next. But if it’s a hurdle to cross to get him to the specialist he needs, well… *sigh* My thoughts and prayers and with you guys every day. I just wish I lived closer.
When you see it every day you just know. H only has the laryngomalacia, but even past the time he’s supposedly “outgrown” it it’s a huge issue w/ feeding for us. We had to switch GI’s to get him on the highest dose of his reflux med possible and that’s helped a great deal. Sleep study sounds like no fun at all, but hopefully it’s a step in the right direction. Just babbling, but know I’m pulling for you guys and hoping the ped can find some better options.
Sigh.
Hope the hoop jumping is less painful than you anticipate, that it is over sooner rather than later and that in the end you get the answers/results/course of treatment you desire.
Come on, good pediatrician! Hit a home run for Nik!
This state…ugh. I know.
So hoping you don’t have to jump too many hoops to get Nik a doctor who will look at the whole child, the history, what the parents know, etc.
And the toll the sleep deprivation takes on you all. You are in much need of a weekend away – to sleep! I hope you get the chance to do that in the near future.
Thanks for sharing your unique situation about your child’s true health condition.
And when you are ready for that out-of-state referral, I’ll be sitting here with Foster’s awesome ENT’s name and number at the ready. Knowing how he said we had nothing to lose with getting Foster’s T&A done and that he was RIGHT, he might just be your guy. Fingers, toes, eyes crossed.
xo
i have to tell you – you never cease to amaze me. i am in awe of your knowledge, strength and confidence as nik’s advocate. you are a wonder – and an INCREDIBLE mom.
xo
You know you’re onto something….keep going. Keep going. XO
Wow, I really hope you figure this out.I give you so much credit. I know from my own experience with my son that the sleep deprivation alone can have such a huge impact on the ability to focus and behave. My son is a mess of sensory dysregulation and inattentiveness when he is not sleeping. Good luck, and I hope you all get some sleep soon!
It sounds like you were on to something with the tonsils. I’m really sorry that you have to wait for an out-of-state referral, but hope it comes soon and someone can get to the bottom of this. We are waiting to get into a sleep study at KKI — I do know what a toll all of this sleeplessness must be taking. Wishing you relief soon.
Oy. Hugs. And good luck.
Insurance can be such a pain.
You guys go through so much.
Maybe they will refer you to a DR office at a tropical resort. That would be nice.
What to say. :-/ I don’t have to tell you to go with your instincts. I hate that insurance companies make us jump through so many hoops. Why do we have to take one doctor’s word as the Word of God? I hate that. Always thinking of you. <3
i’m so sorry you have to go through that, all of you, especially nik. wait–especially you. okay, all of you. it’s exhausting and disheartening that you can’t find the specialist you need right now so you can get the information you need right now so nik can get the help he needs right now.
the sleep issue is so huge.
sending hugs. xxxxx