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.

As if the winter wasn't long enough...

This Monday morning we're getting snow! Okay, so it could be worse and anyone even a wee bit farther north will probably tell me so, but still ... yuck!

There were faint little flakes Saturday morning, but today it's actually settling into little white mounds in the colder areas of the ground (not the streets or sidewalks at this point). Luckily we had a nice weekend in spite of the "doesn't quite feel like Spring" weather. From helping Megan w/ a school project that included my first transfer from our camcorder to CD via computer (Friday night), to a Saturday that went from early morning rummage sales to a night at the theater with Megan and her friend, and a Sunday afternoon that included reading an entire (fiction!) book while Nessa napped (so what if if it was Megan's new book that I wanted to make sure was appropriate, it still counts ... and it was a good book).

If I don't freeze while working in this cold house today, I might get around to posting pics soon.

It's A Good Thing It's Spring...

... 'cause if this is spring, I can't take any more winter.

My beautiful river view at work currently consists of snow flying horizontally across the window. This is never good.

The sky is so grey I can't see the bluffs on the far side of the Mississippi. Temperatures are a good 15-20 degrees below average for this time of year. All I can do is sit here and think of Jimmy Buffet songs: "Boat Drinks", "One Particular Harbor", and others.

I remember it snowing in early May in Northfield MN when I was a freshman in college, but other than that this is the latest I can remember it snowing. And yet, thanks to all the moisture we've been getting, my lawn is green and the dandelions have already started to appear.

I don't suppose there's any chance that the snow will kill the dandelions...

Cully

It's about time I introduce you to our new nephew!

Cullen (Cully) James was born April 15th at 5:19am.

7lbs 15 oz 22in long

The above picture of Cully with his dad (Lance) is my favorite so far. I just realized tonight though that I don't yet have a picture of Cully with his mom! I sure hope some exist! Either way, maybe Cully's big sister needs to practice her photography so we can get more pics of Cully with his parents!

And here's that proud big sister!

Celiac Journey: Diagnosis

Well the waiting for test results is over (for now). Last Monday (4/14) we were at Mayo for an apt. with Dr. Grothe, another blood draw, and an apt. with a dietitian that specializes in Celiac education. Then we went home to wait for a week. I guess it was good that it was a VERY busy week (I spend much of the weekend sleeping to recover.)

Friday night Dr. Grothe called to discuss the test results (I had called earlier that day.)

The end result is that we have a diagnosis of "Latent Celiac." In simple terms this refers to someone that has positive blood tests, but a negative biopsy for Celiac (with or without symptoms). This may be because the disease is indeed inactive, but more likely because we were testing earlier enough that it was difficult to find damage in the intestines.

The plan now is to follow a completely gluten-free diet for 6 months and then to do another complete celiac panel, and if the panel is normal, or closer to normal, after eating a gluten-free diet, then that should confirm a celiac diagnosis. Of course we'll also be watching Nessa's symptoms throughout the six months.

The doctor has advised that we also remove lactose from her diet for at least the first month so that we aren't confused about what could be causing some of the symptoms. And most Celiacs are lactose intolerant at least initially (some remain so). So, in addition to no wheat, barely (malt) or rye, we also have to avoid most dairy products or use lactose free versions (and there are more options here now too).

We have learned a lot already, and have many more resources yet to explore. We are especially blessed with a supportive daycare with teachers that care enough to be following these guidelines above and beyond what I even expected from them (and I already knew they were great). And of course we know all of you will understand when we visit (or take forever to order at a restaurant when out together) -- 100% gluten-free means totally 100% -- including cross contamination -- from crumbs to things needing to be cooked on separate surfaces, etc.

Thank you all so much for all of your thoughts, prayers and support.

The Post With Lots of Bad Puns for a Title, But No Good Ones...

I got to cantor at church last Saturday evening. Our senior pastor was away, and our interim associate pastor does not sing, so she asked me a few weeks ago if I would be the cantor. It was fun to sing the parts of the liturgy one usually only hears.

Since I was going to be there anyway, I volunteered to read the lessons as well, which I do regularly for the early Sunday service. I figured that the attendees would be heartily sick of me by the end of the service, but apparently not. I received several nice comments, and I overheard one woman telling the pastor “He has such a lovely voice.” I will never get used to people saying that! (I heard the opposite way too often when I was younger.)

It was a nice change of pace in a crazy month. As I told a few folks, “April is going by at such a gallop, it was nice to take an evening to cantor.” And it looks like I might get another opportunity in a month or two…

Nessa Birthday Photos

Only a week and a few days late ... pictures of Nessa opening birthday presents.

I realized while uploading these pictures that we neglected to take any photos of Nessa with her "birthday cake" (rice krispie bars ... this was by her request as whenever we asked her what she wanted for her birthday (meaning presents) all she said was "krispie bars"). So, these pictures of her opening presents is all we have from her birthday. The princess crown she is wearing in the pictures was made by one of her daycare teachers.

Happy 3rd Birthday Nessa!

The next pictures were taken the weekend after Nessa's birthday while Nessa was opening presents from Grandma and Grandpa Brooks.




Although we don't have pictures Nessa also received many other great presents from family -- THANK YOU! At our request games were the main theme of Nessa's 3rd birthday and now we're set to have lots of fun with our wonderful 3-year-old girl! In addition to games Nessa got some great new clothes, a wonderful white bench (also useful as a doll crib), books, and a few other toys. It's going to be another fun year, and now that she's smiling more for photos you all just might be able to tell that Nessa is happy sometimes! :-)

Of course we still get some interesting looks when we photograph her, so see for yourself in the recently uploaded Spring photos (birthday and more):
http://www.flickr.com/photos/brooksgroth/

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 2.5 -- biopsy and home to wait

We're home now, and thoroughly exhausted. It was an very early morning, and even with things going smoothly it is exhausting. Everything did go as smoothly as one can expect. Dr. Grothe did the biopsies and came to talk to us. While Celiac cannot be diagnosed visually during an endoscopy, she did say she saw some evidence of Celiac during the procedure. We will find out the results of the biopsies on Thursday (some time after 3 p.m.).

The only rough part this morning was after Nessa came back from the procedure and was waking up from the anesthesia, and became extremely upset when we removed her from the bed. It took her about a half an hour to stop crying and calm down so she could drink some juice and eat a freeze pop. She remained emotional the rest of the day. I think (hope!) she is sleeping peacefully now.

We'll update when we know anything.

For those that read last night's post and know about Mayo, you may have wondered ... yes, I made an error, and we were indeed at St. Mary's and not Methodist today.

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

To My Daughter As She Turns Three

Three? You can’t be three, Nessa Rose! It seems like it was only a few months ago that your mommy and I were wondering if you were ever going to arrive…

It’s been another big year. You are very much your own person now, and while that can be challenging, it can also be so much fun. Your imagination soars; it’s a joy to listen as you narrate your play, to hear what is going on inside your head. You can (and do!) express your own opinions, preferences, and attitudes, and your mommy and I are still learning how best to accommodate those in our thinking and planning.

It’s fun to watch you thinking, sweet girl. When you cock your head slightly and your eyes go off to the side, I know you’re working something out for yourself. You’re smart, and we know that sometimes you’re trying to figure the angles. But sometimes you’re just fitting a new piece of information into your own idea of how the world works. When that happens it’s so much fun to see what you come up with next. When you connect two things for the first time and realize that the connection leads to something else, your delight is contagious. I get excited watching you get excited, and you make me smile so big I think it’s going to reach my ears. Watching you learn new things is the most fun thing about you right now.

You’ve come so far physically too. You can now run, and jump, and draw, and write your name (with a little help from someone steadying the pencil). You can sing a recognizable melody and open doorknobs and drawers. You can help around the house, folding washcloths and putting away dishes. If only we could get you to pick up your toys…

You’re learning all about your emotions: what your different feelings are, when you need to control them and when you can let them go, how to leave behind a sad or angry time and become happy again. That can be stressful, for you and for Mommy and Daddy, but those are things everyone needs to learn, and we try to help you the best we can.

Your mommy and I love you, Nessa Rose…more and more with each passing day. You are my greatest treasure. I hope I’m being a good Daddy, that you’ll look back on these years as a happy time, full of love and support and adventure every day. You’ve certainly been an adventure for me—the biggest adventure I’ve ever had, and I wouldn’t trade it for anything.

Happy 3rd birthday, my sweet girl!

Love,
Daddy