The Clean-Out

The office of the wizard of CVS finally called and would like to see us! This is the good news. We hadn't had an abdominal x-ray or ultra sound in about a year and the Wizard wanted those to happen before we went up to see him. So, we did. Here we are waiting for Ellie's "tummy x-ray" last week. She found this super cool app and we were having a lot of fun playing with it... (I think it's tocatailor.com)





On Monday I was feeling good. I was finally feeling like myself again (post flu and bronchitis) and both kids have been healthy and quite happy lately. I had this moment where I stopped and noticed how good things were. And mostly I thought...

It's been at least 3 weeks without stomach complaints or an episode. This is a big deal and I should pay attention. What is different? What is going well? She is sleeping pretty well, albeit in our bed. Flu and cold season is probably heading out, no encounters with virus'. Perhaps her anxiety about 1st grade is passing? Hmm, what else?

Colin snuggles w/S

Then I thought maybe I should blog about things being really good. I don't want this blog to be filled with negativity, perhaps a post such as-- Hey ya'll, things are great!-- was in order. But I didn't, because when things are good, when life feels generally sunshiny, there "isn't time" to blog. When things feel generally a-o-k and Ellie seems to feel good, then I am just busy being a mom, a sister, a daughter, a wife and a friend. In the last week or so, my brother (who has been living with us for a few months while he transitions here for work), his girlfriend who also moved here from far, far away, well for a variety of reasons she moved in with us too. We love her, this was good news for everyone. We also had Ellie's first-ever dance recital and it was a blast and she did great (and she had NO episode before or after--huge success!). And all the other little glorious moments, like Colin's first-ever shower (a big deal for a 3-year-old!). When things are generally sunshiny, I don't feel that pull to blog or journal or track (food, calories, episodes) or any of that. I feel a pull to just enjoy and keep up!

Giggly, happy dancer

 

"Mommy, I a BIG boy now!"

Anyway, on Monday, a few hours after my big ah-hah moment, I got a call from the nurse at Ellie's GI doctor's office. I am not a huge fan of this particular nurse and this phone call solidified my, mmmmm, well my desire that she not be a nurse in that office. She quickly said that the x-ray from last week showed that Ellie was filled to capacity with "stool." Her intestines were as full as they could be and a total clean-out was a must. Without giving me a second to digest this she said, "So if you can get a pen and paper I will give you the details of what the doctor would like you to do."

-buy 2 bottles of Miralax, one is for the clean-out, one is for maintenance afterward.
-buy a 64 ounce container of gatorade
-buy a package of Ex-lax, the chocolate chewable kind
-poor one whole bottle of miralax into the gatorade, let disolve, have her drink 8 ounces/30 minutes until 75% of it is gone.
-after that have her take 2 of the chocolate Ex-lax chewables

And then she said, "Basically we are going to give her the worst diarrhea of her life. Our goal is for her to have diarrhea until it comes out clear. It will probably take one or two days."

And just like that our conversation was over. And the kids were still playing in the park and the warm summery sun was out and I had to give my daughter "the worst diarrhea of her life."

No stomach complaints, no episodes, happy kids, happy me... GAH!!

Resistance came fast and hard. I called my Mom and a friend, "I can't make her drink that much, that quickly! She will puke. I could hardly drink that much that quickly for my colonoscopy last year and I am not a skinny 6-year-old! And she seems fine. She hasn't complained. Is this really necessary?"

The next day I called her general pediatrician. I have developed a deep sense of respect for this doctor and trust her opinion as a physician, and because she is a mother of three young kids. I do trust her GI doctor, but when thrown for a loop I've learned it's ok to look for additional opinions. She looked at the x-ray and agreed that it was pretty bad, worse than last year's and last year's was in the bad range. She said all GI doctors have different ways of doing the clean-out and that it was perfectly fine for me to go much more slowly than the instructions this nurse gave. We came up with a slightly altered, more gentle plan. She affirmed what I've thought for a long time, that Ellie's chronic constipation is probably a big trigger for her CVS and that just like tending to Ellie's sleep issues we should also tend to this chronic constipation.

UGH.

So, once again I had to talk to Ellie's teacher about her missing some school this week (again and again and again--all the hard aspects of missing school should be a post of its own), and this is how E spent her afternoon:

"ELLIE...TAKE ANOTHER DRINK!"
"Hey El, can you do 2 big drinks for me?"
"I know you're full, but how about 1 HUGE drink and then we'll take a break?!"
"I am so proud of you! Can you take another 3 big drinks?"
"HEY ELEANOR...ARE YOU DRINKING??"

We got through 32 ounces of lemonade/water and half of a bottle of miralax and one Ex-lax chewy thing. So far she only pooped once, so I fear it could be a long night...or maybe it won't kick in until tomorrow...or maybe she will be so stuffed up it will trigger an episode tonight... or...or....

Once again today I am reminded of what a trooper Ellie is. When she needs to be tough, she is really tough and amazingly positive. I am also reminded that I am in charge (ah-hem, sorry Brian) WE, we are in charge and if something feels uncomfortable (like trying to get my kid to drink 8 ounces every 30 minutes) I can speak up and use my resources to find a better plan. I am reminded of how hard CVS is on the school aspect of a kid's life and why it is hard to explain that even though she hasn't actually vomited for a few months, she has still missed a bunch of school. I am reminded of how great my friends and family are (supportive, listening, considering, affirming, asking if we need anything) and I am also reminded of how hard it has been to cultivate relationships this year--so much of my time is spent worrying about Ellie, calling about appointments, going to appointments, catching up on lost sleep. None of it has been really horrible, but it's hard to maintain friendships during this sort of "busy." And in the same vein, I am reminded that I am a graduate student who hasn't opened her books in about a month.

One day at a time, one day at a time.

Dance Recital Rehearsal

Ellie takes a dance class and tonight was her official dance rehearsal...full costumes, big theater, loud music, spot lights. This is her first recital. Afterward she said, "I thought I was going to puke the whole time! Seriously Mom! I really thought I was going to throw-up!" Brian: "Why did you feel like you were going to puke?" Ellie: "Because it was so exciting! I really thought I was going to throw-up, really!" Me: "But you didn't, you did it and you didn't puke!" And then we literally gave high fives all around. A good CVS day.

Mommy Guilt Update

At dinner table, just Ellie and I.

Me: Ellie, do you remember last week when we were at the beach and you wouldn't eat your peanut butter and jelly sandwich because your tummy hurt?
Ellie: Yes.
Me: Remember how I was crabby at you because I wanted you to eat?
Ellie: Yes.
Me: Well, I'm sorry baby. I thought you were just worried about your CVS tummy but really you had the flu. I'm sorry I got crabby with you about eating that day, I didn't realize you were really, really sick.

(Long pause, Ellie brain processing)

Ellie: Mommy, if I was still mad at you for that I wouldn't even be your daughter! Don't worry Mom!

Me: (long pause, Mommy brain processing)...BIG HUG..."Thanks honey. I love you past outer space!"

Mommy Guilt

Moms know the truth (I'm sure Dad's do too, but I am more familiar with the Mommy side of things):
We do the best we can everyday and everyday we go to sleep so thankful for all the great moments of that day but we also feel guilty for the moments when we snapped at them. Typcially our snapping is because of exhaustion, or trying to balance 12 things at one time, or trying to give everyone good attention at the same time, or whatever.

"What? We are just playing."

But whatever the reason, we snap. And it doesn't feel good. And we make a pact to try harder the next day, we say a prayer for patience and good energy and we move on.

I have had a terrible guilty knot in my stomach for a few days now. Two weeks ago Ellie had what I thought was a HORRIFIC episode. Twice in the middle of the night I thought I should just drive her to the ER because she was clearly in so much pain (stomach pain) and just crying, moaning. It was awful, neither of us slept and I felt terrible for her. The strange thing was that she also had a very high fever the whole night (103.5 degrees). Ellie's episodes often go hand-in-hand with her body fighting some sort of bug (usually a cold), so I just figured she was fighting another cold and having a terrible CVS episode at the same time. This was on a Friday night. The epsidode was so bad it was taking her days and days to recover--also unusual, it usually just takes an afternoon or a day to recover. The following Wednesday B and I talked and both of us agreed we should take her to the regular doctor because she would NOT eat anything, was so lathargic that she almost fell asleep at dinner (on her plate), etc, etc. I was worried this was a sign that there was more going on with her than CVS. Maybe her anxiety around eating was so bad it was bringing her energy down, maybe she really does have mito disease and, well, that's scary... etc, etc. It never occured to me that she just had a terrible flu.

We went to the doctor and her doctor thought it could be rotovirus (really bad stomach flu known for high fevers and terrible stomach pain). She took a swab and it came back negative. I was bummed. I had hoped it was rotovirus. But the doctor said it might still have been rotovirus not CVS and the swab was just taken too late. I felt like she was trying to make me feel better, trying to convince me that this was not what our CVS lifestyle might look like. I felt deflated for all of us, for the pain Ellie had to endure, for the exhaustion and anxiety it was causing all of us.

Until the next Friday night.

Colin woke up with 103 fever, began puking, and well, fill in the blanks. Today is Wednesday and he is still not better. Acting just like Ellie was a week ago. Functional but exhausted, not wanting to eat anything, and still some diarrhea.

Mommy Guilt.

Ellie has this thing where she is really afraid to eat after episodes. She also is extremely sensitive to anything anyone says about what food is "healthy" or not healthy (which is confusing for her since so many of the adults in her life all have various opinions about what is healthy or not and why, for example for most people bananas and bread are good and healthy--but for Ellie this causes her constipation to be worse which in turn causes stomach pain--confusing, too much for a 6-year-old to understand). She soaks it all in wanting to stay healthy, wanting to stay away from an episode.

BUT.

But her weight hasn't changed for at least 9 months now. Her regular pediatrician said last week that it is ok right now, but that at her age and with her height increase she really should be gaining a little, she has not gained for a while. So, I've been trying to convince her that after an episode it really is ok to eat. That at school she must eat. That at home she has to finish dinner. Etc, etc.

BUT.

But overeating at a meal is a trigger for lots of people with CVS and it has been for Ellie in the past. Too much of a good thing leaves her in bed with a stomach ache. Also, too much chocolate is a trigger (just like for migraines). Some day too much wine will be too.  :-)

So, last week, just two days after her terrible flu that I thought was just CVS, I snapped at her about eating. She refused to eat. I got crabby. Then the next day she still wouldn't eat, didn't want juice, complained of her stomach hurting. I told her she needed to eat. Her body was hurting because she wasn't eating anything (almost literally). More tears from her, more frustration from me. And then it became clear it had been a terrible flu. And now Colin won't eat anything, almost literally.

GUILT!

I know, I know I was doing my best, but damn do I feel terrible for being cranky with her about eating. It breaks my heart. Knowing that she was truly still in pain. That she too thought it was CVS (because she was following my lead) and she was trying to tough it out--go to school, go to dance class--all the while with this terrible flu bug and feeling awful. Ugh! It kills me. She is so amazing, and so positive, and so, so tough. Why can't I just grow a little more patience?!

Mommy guilt sucks. Luckily she is only 6. Luckily she is more resilient than I am. Luckily I have been able to hug and kiss her a thousand times since then. Luckily I have a husband who lets me sneak back in our bedroom with Ellie to have a "girl power hour" where we snuggle and read a chapter book and talk about school. Luckily I'm getting over it.

Some days I am really positive, other days I want to tell CVS to suck it. Today is one of those days.

Ignorance

Soon after Ellie was diagnosed with CVS I read (or heard) a statement about how people with CVS really need a team of physicians to care for them. The statement included a list: nursing, general physician, GI specialist, psychologist, etc, etc. I will always remember rolling my eyes and saying outloud to the computer, "Ha! That seems a little extreme."

Ellie now sees a general pediatrician, a GI pediatrician, an allergist, an Ears/Eyes/Nose/Throat specialist, a regular dentist for cleaning, a special sleep dentist, a pediatric sleep specialist and new this week...a child psychologist.

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!