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Welcome! The first 6 posts on this blog are actually e-mails I sent out to friends and family as updates about my 6-year-old daughter's diagnosis with Cyclic Vomiting Syndrome. They are letters to our biggest supporters and all those people who love our Ellie dearly. If this is your first time here and you want the whole scoop make sure to begin with the post called "First Update: After the Storm." Click Here.


Tuesday, May 7, 2013

A Dentist for Sleep Disorders?

Yes, it's true. We are seeing a dentist whose primary role will be to help Ellie with her sleep issues (although straightening her teeth will be included as well). A strong trigger for kids with CVS is poor sleep and we've known...well, we've known since the day she was born..that Ellie has had sleep issues. After a surgery that removed her adenoid and tonsils after her 2nd birthday her sleep improved so dramatically that Brian and I figured that was all said and done. In fact, we never went for a follow-up sleep study (I would recommend doing a follow-up even if your child seems so much better). Over the last few years it has been more and more obvious that Ellie still has serious issues with sleep. It's interesting what a second child will teach you when your first kid has some issues, like sleep for example. When we put C to bed he is done for the night. It is truly RARE for him to wake up or get out of bed for any reason until 6:30am. When we put Ellie to bed we are ready for her first visit to us somewhere around 11 or midnight. These are long nights and while we do have weeks or even a month that is better than the rest, it is clear that her little body will not let her just sleep. We've been to psychologists, allergy specialists and even had a sleep study done about a year ago to make sure she wasn't having apnea again. So, this time our doctor recommended getting into the wizard of sleep--Dr. Sheldon--to get to the bottom of her sleep issues.

Heal her sleep issues = reduce her CVS issues.

A few weeks ago we saw Dr. Sheldon, a highly recommended pediatrician who specializes in sleep disorders. He works at Children's Hospital. He is basically the creme of the crop as far as pediatric sleep specialists go and once again we are lucky to live here so that we can be one of his patients. Dr. Sheldon said he feels pretty confident that Ellie's breathing is still not 100% when she is sleeping. There are many reasons he had for believing this but to simplify this update I'll skip through most of that (he had reviewed her xrays, past sleep studies, etc). Essentially he believes that when Ellie lays down her breathing is compromised. He said it would be like snorkeling with a straw instead of a snorkel mask--it's possible, but after a while your body knows to come up for a good breath of air. In Ellie's case, her body wakes her up. The best way to improve her airway has to do with the way her jaw sits on that big, beautiful head of hers. Since her tongue is connected to her jaw, when she lays down and her tiny jaw falls back that means her tongue falls back too and blocks her airway. Also, Ellie has an extremely high palate on top of her mouth. The top of your mouth is the bottom of your nasal passage, so her nasal passage is being squished by the top of her mouth. Basically it's a double whammy for Ellie. So, the first thing Dr. Sheldon recommends is opening up her breathing space and the best way to do that is through special orthodontic work. Basically we will retrain Ellie's jaw to sit in the appropriate place, widen the bottom and top space which will lower her palate (hopefully) and all of this will open her airway. Dr. Sheldon works closely with a dentist. Together they are "breaking new ground" and having a whole lot of success.



 I tried to find a few pics that demonstrate Ellie's face-O, crane-O structure issue. It didn't go well, but the pics are too cute not to share anyway!




Dr. B

Last week was our first appointment with Dr. B and to be honest, I was feeling a bit apprehensive when we arrived at our appointment. The dental office is located in a house in a neighborhood in the city. We were told to park in the back and that the main entrance was also through the back.What this actually meant was that we were parking in an alley where there were only 2 parking spots and walking through a gate in a tall wooden fence. There was a wooden bridge that took us from the alley to the porch on the back of the home, which was not a home but a pediatric dental office. You can see how I started to feel a little apprehensive. The sleep wizard's office met all my modern, conformist expectations...located in a high rise downtown, no windows, plenty of glass doors, stuffy, white walls, doctors with white coats, hand sanitizer at every turn. This dental office broke all the rules of modern conformity. On the back door of the house, which is actually the entrance, there is a big colorful sign, "Kid's Dentistry" or something like that. Laying right on the deck in the wide open doorway was "Blue," a large golden retriever who welcomed us gently before he went back to his sunbathing. Don't get me wrong, there was the normal front desk area and once we got into the regular office area it looked like a normal dentist office but you can see where my skepticism came from. I am also still in this mother bear mentality after our poor experiences with our first pediatric GI. I want the best for Ellie, no need to waste time or our money at this point. So, this Dr. B was going to have to impress me...

He did.

Fun, colorful mouth/teeth pictures




Two images came to mind after we left that day (2 hours later!). One was of Patch Adams. Of course this guy is not crazy, but he has about that much sunshiny energy and was clearly incredibly passionate about his work and probably top of his class. The other image was of my Uncle Terry. If Uncle Terry had chosen to be a dentist, this would have been him. He even wore "KEEN" sandals with socks on. Before we left he had Ellie sit down with another patient who was a 4th grader to hear what it is like to have retainers. The three of them (Ellie, this other girl and Dr. Boyd) had a little pow-wow about wearing retainers, sleeping better and straight teeth. Patch Adams of dentistry.

Dr. B also spent a lot of time showing me xrays and explaining all things cranial structure. He had a lot to tell me and not very much of it was retained that afternoon but he won me over and we will pick up Ellie's retainers in a few weeks.

So, my 6-year-old is going to wear two retainers for basically 24 hours a day and without losing them...pretty sure that will be another post! For now, sleep well and brush often!

Interesting website regarding "Oral Myofunctional Therapy":  Click Here!
BUT, I like this one better, "Orthotropics":  Click Here!









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