Alarm 4, Tonsils & Adenoids 0

Shawn here:

The day started at 4(:15) AM today. We had to get up early to take Nessa in to have her tonsils and adenoids removed.

Nessa has always been a restless sleeper with light snoring, and some research led Tami to suspect childhood sleep apnea. The only procedure to treat childhood SA is having the tonsils and adenoids removed (with a 95+% success rate), so we made an appointment to have Nessa examined. One quick look and the ENT doctor said "Yup, those are impressive. I can see where they'd cause sleep issues." So we scheduled a tonsillectomy, and today was the day.

Nessa was the first patient of the day, so we had to be there at 5:45. We just left Nessa in her jammies, bundled her in the car, and off we went. When we got there, Nessa got to put on the tiger jammies they showed her during our tour last week, and then she played while everyone talked to Mom and Dad. Nessa was very good and attentive during the pre-op stuff, although she did not like the medicine they gave her to make her drowsy. It also made her loopy, and she was pulling her surgery hat down over her face.

Our associate pastor came in and stayed with us during the pre-op routine, and when we had a moment said a wonderful prayer pitched right at Nessa's level of understanding. I got to accompany Nessa into the OR, just like in Rochester, and stay until she was under. That was not as wrenching this time as a year ago, but I still recommend avoiding seeing your child placed under general anesthesia if possible.

The doctor came out about half an hour later and told us that everything had gone fine. Nessa was in the recovery room for another 30-35 minutes before they paged us, so it was about 8:15 when we got to go back into the private post-op room. That's when the adventure started. Nessa was not happy about how much her throat hurt, and she did not want anything to drink or suck on. She cried her "I'm hurt" cry and pulled in on herself, making it hard to comfort or talk to her. Finally Tami got into the bed and held her, and I sang all of Nessa's old favorites to calm her down as I did when she was little. The combination of the two seemed to work, and Nessa fell asleep. Apparently I was singing a little louder than I realized, because when the nurse came back and saw Nessa asleep she said it must have been the wonderful singing that did it.

Nessa slept fitfully, waking up and crying every so often, refusing all liquids and popsicles, and then falling asleep again. At that point she sounded just like a percolator. (Yes, I'm old.) Every so often the oxygen monitor would go off, so after a time the nurse hooked up a hose and funnel that blew air past Nessa's face (much like my CPAP, but without a mask). That worked when Nessa was asleep, but it kept waking her up and she didn't like it when awake, so it was a bit of a battle for Tami, who was holding Nessa all this time. I was out of the room for part of this, getting some breakfast, making phone calls, and so on. At one point Nessa was awake long enough that we tried putting a movie in, but as soon as it got started she fell asleep again.

The nurse was getting a little worried that Nessa wouldn't drink anything or have a popsicle, and at 10:30 it was time to give Nessa more Tylenol. Nessa wasn't having anything to do with taking Tylenol orally, and after 10 minutes of trying and some increasingly agitated fussing, we gave up and let Nessa go back to sleep. A bit later the nurse came in and gave Nessa a Tylenol suppository, which went fairly easily and did not disturb Nessa. That solved that problem.

I went off again to find something for Tami to munch on and some water. We were both doing periodic Facebook updates, so some folks watched the whole drama as it played out. When I got back, Tami took off to walk around a little. The nurse came in to put a third bag of fluids on the IV. Originally they had planned to give Nessa about 1 1/2 bags, but they were worried that she wasn't getting any liquid and the anesthesiologist ordered the third bag. By this point Nessa sounded more like an electric hair clipper, and the oxygen alarm hadn't gone off in a long time. The nurse talked to the ENT doctor, and they decided that Nessa could go home about 1 PM. Finally, at around 12:30, Nessa woke up and agreed to take sips from her water bottle. That was enough to convince everyone that she could go home, and we got her out the door a little after 1:30.

We got home a little before 2 PM. Nessa seemed a little more alert, and started to watch The Little Mermaid II, but quickly fell asleep again. I went out to get more Tylenol and run a couple of other errands (including getting more movies), but when I got back Tami told me that Nessa was flatly refusing to take any liquid Tylenol. This worried us, so I took the just-purchased liquid Tylenol back and got some melt-away tablets. Nessa didn't want to take those either, but we got one into her mouth. We only wanted it on her tongue, but it went all the way down her throat. We were not her favorite people at that point.

Nessa kept sleeping, Tami kept watch, and I kept busy doing whatever else. Finally, about 6:30 PM, Nessa told us she was hungry, and she ate an ice cream bar. As I type this she has been awake for over an hour and is watching The Little Mermaid II again. We still have to figure out how to get more Tylenol into her before bed, and how to get her to drink more liquid tomorrow (the IV fluids will keep her hydrated until about noon), but she is responding like the Nessa we know and love. She's talking about what's happening in the movie, telling Tami what's going on--that's our Nessa. :-)

All in all it's been a tiring day. Tami was almost wiped out, but has come alive a little after getting something to eat and seeing Nessa revive. I'm going to crash any time now. I think it will be early to bed for everyone. We know that today will have been more than worth it in the long run, but it's scary to see your child in pain and not be able to help or comfort her. That's a pretty good definition of feeling helpless.

I want to thank everyone for the prayers, positive thoughts, and well-wishes on our behalf throughout the day. We truly felt surrounded by love and care, and Tami even said at one point that she was floating on it. It helps so much to know that others are sharing your burdens, even in a small way, and that you are not alone. Thank you.

More Medical News

Nessa had her 3 year-old checkup today. We were expecting a routine appointment, but instead we got thrown another curveball. After a thorough examination, the doctor was quite certain: Nessa has "dressing dyslexia."


Apparently, DD can take several forms. Aggressive colorization, clothes on backwards, wearing one sock or shoe each from two different pairs, and putting shoes on the wrong feet are all common symptoms. It's not contagious, although researchers have speculated that it could be genetic.

Naturally, we were stunned. We've seen the symptoms, of course, but I guess we were in denial. I just thought Nessa was eclectically disaccessorizing. I had no idea it was so serious. However, the doctor assured us that Nessa should be able to lead a happy life, and even said that if she learns to control it, DD could actually lead to personal fulfillment and prosperity. The only real treatment (naturism) is not practical in this part of the country (at least not year round). There are some experimental treatments involving depigmented sack dresses and the like, but frankly I can't see subjecting my little girl to those extremes. I guess we'll just learn to live with it. It certainly doesn't seem to be bothering Nessa any.

Celiac Journey: Part 3 -- Biopsy results lead to more questions

Do I start with the doctor's quote of the day, "I'm so surprised", or do I cut to the facts ... hmm ... these posts aren't getting any easier to write.

So, about 3:30 today (a very busy and hectic day back at work) I started checking my clock about every 30 seconds, and checking to see that my phone was working every other 30 seconds. At 4, I followed the doctor's instructions and called her office, and after being transferred 3 times an assistant informed me, "all the tests were normal."

I think my response or lack of one clued the assistant in that a consultation with the doctor was in order. The assistant said she would check with the doctor about "what we should do now" and get back to me. It was already about 4:20.

Just before 5 Dr. Grothe called me. (Thank you ... it was wonderful to talk directly with her). In short this is where we're at:

• According to pathology the intestinal biopsies were normal (negative for celiac according to classical definitions)
  
• Dr. Grothe is very surprised by this and is not ruling out Celiac. (I had read about false negatives, biopsies that are hard to read, and other things that make it less clear cut but had hoped we wouldn't be dealing with those situations.) She mentioned something she referred to as subclinical celiac (along with a few other medical words I didn't have a chance to write down).
  
• The doctor will review the biopsy herself as well as consulting with another doctor (I didn't catch the name but she used the words 'International Celiac expert')
  
• Will run another celiac blood panel (not because she doesn't trust the initial one run by Allergy Associates, but just to be sure)
  
• Will run the genetic testing for Celiac as well (Mayo does do this test in their lab)
  
• Nessa's other test results did show that she's slightly anemic and that can be associated with Celiac. And her other test results did not show evidence of anything else wrong (these included various vitamin/mineral screens as well as a 'stool study')
  
• The doctor said at this point she would still very, very strongly recommend a Gluten Free diet based on what we know, but feels it's important to continue with some additional testing and analysis to both make sure we aren't missing something else that could be related to her symptoms, and also to confirm (or still possibly rule out) Celiac so that we know exactly what we are dealing with (there are other forms of gluten intolerance as well but Celiac has additional implications associated with it).
  

So ... we will be talking with Dr. Grothe in more detail on Monday. With any luck my exhaustion will lift just enough to post some of Nessa's birthday pics before then.

And I can't forget to add that even the doctor said how beautiful and adorable Nessa is, and how great she did at her appointments!

Celiac Journey: Part 2 -- initial apt. to biopsy prep

I'm tired and the night will be a short one, so this update will be short as well.

Our apt. at Mayo with Dr. Grothe went VERY well. I was impressed with the clinic (my first time there) and feel confident with the doctor. I have only good things to say about our interactions with everyone there today.

I also have good things to say about Nessa. She did very well. She reports that the best part of the appointment was when the doctor checked her belly. After thinking about it she added, "and the blood test." I asked her to tell me what they did during the blood test and she reminded me about how she got a band aid (she likes that), a little froggy, and lots of stickers. :-) Seriously, she did awesome during the blood draw and afterwards the Nurses went on and on about how they wish all of the kids were that easy as Nessa barely moved and just held a intense and curious look on her face.

We discussed the options going forward with the doctor and while she said that Nessa's test results were impressive (not in a good way), that she would still recommend doing an intestinal biopsy both to confirm the Celiac diagnosis and also to check for a couple of other things. They will likely also be taking additional blood while she's sedated to check a few things, including vitamin and mineral deficiencies. We agreed that finding out all of this would be best, and we scheduled the biopsy.

So, we need to be back at Mayo, or rather Methodist hospital, by 6:45 a.m. tomorrow, and this means the alarm needs to go off at 3:45. If it wasn't for thoroughly appreciating my few hours at home today I would have wondered why we didn't stay in town. :-) (By the way I enjoyed those hours because I was collapsed comfortable in my own bed napping as I was totally wiped out from the day.)

We expect to get the biopsy results late in the day Thursday. We're scheduled to return to Mayo for a follow up with Dr. Grothe and an apt. with a Celiac dietitian on Monday afternoon.

Thanks for your continued thoughts and prayers.

Celiac Journey: Part 1

I thought I better write part one before we get to part two. We will hopefully get to part two on Tuesday.

About 6 weeks ago we took Nessa in to Allergy Associates here in La Crosse (www.allergy-solutions.com). One of the reasons we took her there is because I suspected she had some food allergies giving her "digestive issues" as I politely call them. I had suspected this earlier but during potty training it became even more obvious, and of course now she can talk about it. So the doctor we saw there did run food allergy tests but he also ran a celiac panel due to the GI symptoms she was having. On March 14th we received a letter in the mail with her test results. It stated that all of the tests for food allergies were negative, but her celiac panel was positive.

(Anyone reading that needs a basic definition: http://en.wikipedia.org/wiki/Coeliac_disease)

I walked around in shock for hours as I was just familiar enough with Celiac that I knew this was going to be a big deal, and would not go away with age or any type of allergy treatment (as I had hoped when I went to Allergy Associates). I also knew that we couldn't merely treat the symptoms with drugs even if we wanted to. No, there is only one way to treat Celiac -- COMPLETE Gluten avoidance. This means no wheat, barely (malt), or rye products; and no products made from wheat, barley (malt), rye or a derivative of those three products, and no oats for the most part either ... and we won't even talk about cross contamination of many, many products (bulk bins at health stores, production lines that produce wheat products along with the nonwheat products, and so on).

I kept reading the paragraph over and over:

From Doctor's letter:
"Antibody assays for gluten intolerance (also called celiac sprue) are significantly positive. Anti-gliadin IgG is positive, but the most significant and reliable test, anti t-TG IgA is greatly elevated. There is no question that this means she has celiac sprue. Although the gold standard for celiac sprue is an intestinal biopsy, it is an invasive procedure which could and should be avoided."

For anybody interested in numbers, Nessa's TTG-A level was 159.74 and anything over 30 is considered positive.

And we would need to decide if we were going to pursue an intestinal biopsy or not. It is indeed the gold standard for diagnosis. The allergist doesn't think it's needed, but yet he referred us to a pediatric GI doctor that surely will think it's needed (?). When I talk to other parents raising kids with Celiac I get strong responses on both sides, and am left more confused than ever. After a few weeks of research, much thought, discussion between Shawn and I, and prayer, we have decided that we almost certainly will pursue a biopsy. The only reason we wouldn't is if the specialist feels the other evidence is strong enough without a biopsy, but that is not expected to happen.

The specialist? Oh yes. It was clear from just a couple of phone calls and a couple of phone messages from one of my own doctors that nobody in La Crosse would see a soon-to-be-3 year old for a Celiac diagnosis, so we were referred to Mayo in Rochester. And, after faxing Nessa's test results to them, we were in fact invited to have an apt. with them (yes, this is how it works). So, we have an apt. with Dr. Rayna Grothe on Tuesday April 8th at 7:45 a.m. Please send us your thoughts and prayers for this apt. to go well on all levels. And pray for my anxiety not to get out of control too! :-)

What we expect to happen on Tuesday is to have a lengthy apt. discussing Nessa's symptoms, etc., Celiac, and what to do next. And then we will schedule when to come back for "additional tests" within the next week or two, and those tests will likely include an intestinal biopsy. To biopsy a 3 year old requires general anesthesia, and that is the main risk of the procedure.

I'll try to update the blog when I can on Tuesday to let you all know how it went and where we're going from here.

In the meantime I continue to spend my spare breaths researching Celiac and how to raise a celiac child. There are thankfully some excellent resources now as compared to merely a decade ago. I have so many offers of support and assistance online that I cannot keep up with them in my meager online time (I've also been putting in overtime hours at work), and yet there are very few local resources and almost nobody I talk to here has even heard of it. There is still a great deal of education to be done so that everyone knows about this under-diagnosed disease!

I've gone through shock and a little grief already and likely will again as it is simply part of the emotional process. One thing my past experiences have taught me is not to fight that emotional process! At the same time Shawn and I both realize it is something we can easily deal with, and in fact we are so grateful that the diagnosis was a not a disease that was more immediately life-threatening or included treatments with potential (or certain) side effects. This really is very doable, and will be so worth it to have a happy healthy daughter. We're also thankful that it was caught SO much earlier than most pediatric celiac is diagnosed as frankly Nessa wasn't that sick compared to many of the stories I have already read. And it is a proven fact that the earlier Celiac is diagnosed and treated with the gluten-free diet, the less likely the individual is to develop additional autoimmune disosrders, associated disorders, or even cancers.

Just a few of my favorite sites lately (will eventually add to sidebar of blog)

http://www.celiacdisease.net/ -- University of Chicago

http://www.celiaccenter.org/ --University of Maryland

http://www.twincitiesrock.org/ -- Twin Cities ROCK (Raising Our Celiac Kids)

http://www.glutenfreecupboard.com/index.html -- Rochester Gluten Free Store

http://www.celiac.com/

http://www.sillyyaks.com/content/index.php