The Christophers: November 2013

Wednesday, November 20, 2013

Emma's Diagnosis: Gastroparesis

After almost 3 years, we finally have some diagnoses for Emma. It's not the best, but at least we know what it probably is and what it probably isn't, even if we don't know what to do about it yet. After her tests, they determined it's actually a combination of three things:

1) poor oral motor function (inappropriate size intake, not chewing or masticating food properly and swallowing things whole, along with minor oral aversions)

2) reflux/GERD, and

3) gastroparesis.

They said there are few things that could provide relief for her at her age and they discussed drug therapy and surgeries that they determined would not help her symptoms (fundoplication was one) because the side affects may outweigh the prognosis.

I read up on gastroparesis on the Mayo website and I've included it here.

GASTROPARESIS:

Definition

By Mayo Clinic staff

Gastroparesis is a condition in which the muscles in your stomach don't function normally.

Ordinarily, strong muscular contractions propel food through your digestive tract. But in gastroparesis, the muscles in the wall of your stomach work poorly or not at all. This prevents your stomach from emptying properly. Gastroparesis can interfere with digestion, cause nausea and vomiting, and cause problems with blood sugar levels and nutrition.

There is no cure for gastroparesis. Making changes to your diet may help you cope with gastroparesis signs and symptoms, but that's not always enough. Gastroparesis medications may offer some relief, but some can cause serious side effects.

Symptoms
1. Vomiting
2. Nausea
3. A feeling of fullness after eating just a few bites
4. Abdominal bloating
5. Heartburn or gastroesophageal reflux
6. Changes in blood sugar levels
7. Lack of appetite
8. Weight loss and malnutrition
Causes

It's not always clear what leads to gastroparesis. But in many cases, gastroparesis is believed to be caused by damage to a nerve that controls the stomach muscles (vagus nerve).

The vagus nerve helps manage the complex processes in your digestive tract, including signaling the muscles in your stomach to contract and push food into the small intestine. A damaged vagus nerve can't send signals to your stomach muscles. This may cause food to remain in your stomach longer, rather than move normally into your small intestine to be digested.

The vagus nerve can be damaged by diseases, such as diabetes, or by surgery to the stomach or small intestine.

Risk Factors

Factors that can make it difficult for your stomach to empty properly include:
1. Diabetes
2. Abdominal surgery
3. Infection
4. Certain medications that slow the rate of stomach emptying, such as narcotic pain medications and antidepressants
5. Certain cancer treatments
6. Anorexia
7. Bulimia
8. Scleroderma
9. Parkinson's disease
10. Hypothyroidism
Complications

Gastroparesis can cause several complications, such as:
1. Bacteria overgrowth in the stomach. Food that stays in the stomach can begin to ferment and disrupt the balance of good and bad bacteria. This can allow harmful microorganisms to grow out of control.
2. Undigested food that hardens and remains in your stomach.Undigested food in your stomach can harden into a solid mass called a bezoar. Bezoars can cause nausea and vomiting and may be life-threatening if they prevent food from passing into your small intestine.
3. Blood sugar fluctuations. Although gastroparesis doesn't cause diabetes, inconsistent food absorption can cause erratic changes in blood sugar levels, which make diabetes worse. In turn, poor control of blood sugar levels makes gastroparesis worse.
Tests and Diagnosis

Doctors use several tests to help diagnose gastroparesis and rule out conditions that may cause similar symptoms. Tests may include:
1. Measuring the time it takes for your stomach to empty. A gastric-emptying study measures how long it takes for food to move through your stomach. There are several ways to measure stomach emptying. In the most common test, you eat food that contains a small amount of radioactive material. A scanner that detects the movement of the radioactive material is placed over your abdomen to monitor the rate at which food leaves your stomach.
2. Using a scope to see inside your stomach. An upper endoscopy may help rule out other conditions that can cause delayed gastric emptying. During an endoscopy, your doctor passes a thin tube equipped with a camera down your throat and into your stomach and small intestine. The camera transmits images your doctor uses to evaluate your digestive system for abnormalities.
Treatments and Drugs

Treating gastroparesis begins with identifying and treating the underlying condition. For instance, if diabetes is causing your gastroparesis, your doctor can work with you to help you control your diabetes. Beyond this, other gastroparesis treatments may include:

Changes to your diet
Your doctor may refer you to a dietitian who can work with you to find foods that are easier for you to digest, so that you're more likely to get enough calories and nutrients from the food you eat. A dietitian might suggest that you try to:
1. Eat smaller meals more frequently.
2. Eat low-fiber forms of high-fiber foods, such as well-cooked fruits and vegetables rather than raw fruits and vegetables.
3. Choose mostly low-fat foods, but if you can tolerate them, add small servings of fatty foods to your diet.
4. Avoid fibrous fruits and vegetables, such as oranges and broccoli, that may cause bezoars.
5. If liquids are easier for you to ingest, try soups and pureed foods.
6. Drink water throughout each meal.
7. Try gentle exercise after you eat, such as going for a walk.
Some people with gastroparesis may be unable to tolerate any food or liquids. In these situations, doctors may recommend a feeding tube (jejunostomy tube) be placed in the small intestine.

Feeding tubes can be passed through your nose or mouth or directly into your small intestine through your skin. The tube is usually temporary and is only used when gastroparesis is severe or when blood sugar levels can't be controlled by any other method.

Medications
Medications to treat gastroparesis may include:
1. Medications to control nausea and vomiting. Anti-emetic medications include prochlorperazine (Compro), diphenhydramine (Benadryl, Unisom) and lorazepam (Ativan).
2. Medications to stimulate the stomach muscles. These medications include metoclopramide (Reglan) and erythromycin. There is a risk of serious side effects with these medications, so discuss the benefits and risks with your doctor.
Surgery
If treatment doesn't help control your nausea, vomiting or malnutrition, you may consider gastroparesis surgery. During surgery, the lower part of the stomach may be stapled or bypassed to help improve stomach emptying.

Experimental treatments
Researchers are working on new ways of treating gastroparesis, such as:
1. Injecting a nerve toxin to allow the stomach to release food.Botulinum toxin type A (Botox) is a nerve toxin most commonly known for its use in treating skin wrinkles. Researchers have found that Botox injections relax the pyloric muscle in some people, thereby allowing the stomach to release more food into the small intestine. The benefits are temporary, however, and more studies are needed to determine the overall usefulness of this treatment.
2. Implanting an electrical device to control the stomach muscles.Electrical gastric stimulation uses an electric current to cause stomach contractions. Working much like a heart pacemaker, this stomach pacemaker, consisting of a tiny generator and two electrodes, is placed in a pocket that surgeons create on the stomach's outer edge. Stomach pacemakers have been shown to improve stomach emptying and reduce nausea and vomiting in some people with gastroparesis, but more studies are needed.

Monday, November 18, 2013

Statistics: Emma (34 months)

Emma turned 34 months! (This post is all about Emma and is full of pictures of her, so you have been fairly warned!)

~32 Months (09/04/13)

Weight: 24 lbs 9 oz, 6.01%

Height: 33.25", 4.87%

Clothes: 24 months-2T shirts/pants

34 Months (11/16/13)

Weight: 23-25 lbs

Height: 34.5"

Clothes: 24 months-2T shirts/pants

The nutshell version: Overall Emma is a very spirited individual. She is determined and headstrong, some days I don't know who is more stubborn, me or her. On the other hand, she is so sweet and polite and is constantly smiling. She loves horseplay, and is getting tougher. She needs help sharing, especially with her brother. She is so so fun and full of life. Her speech is developing well, so much we are constantly telling her to be more quiet inside now... We're getting ready to drop developmental therapy at the end of the year, but we're still working on vomiting issues with the GI doc.

********proceed for the longer, detailed story*******

Feeding: Emma still throws up and doesn't digest her food normally. She doesn't know appropriate size intake, often swallows her food whole, etc. She will throw up breakfast at 8pm and the food will be just as she ate it, not broken down or chewed. We're going on year 3 of this, folks. Yes, it has gotten better, but it is still happening about every other day to every week. I have to regulate her emotions, not let her laugh or cry too hard, feed her like a baby. The GI doctor ordered a swallow test and some meds. They had ordered it before, but supposedly, there was a nationwide shortage in barium so Emma never got one before, even though she's needed one for the last year or so. I'm still awaiting the results.

I just want to write, for the record, that Emma was the most wonderful, obedient child the day of the test. She did everything the doctor asked that most 2 1/2 year olds would have never done. She got naked and into a gown without being scared or throwing a tantrum...in a room full of scary machines. She drank an entire glass of chalky drink that was horrible with not one complaint or protest. (She even asked for more. They said that was a first.) She swallowed only when told by the doctor. (She didn't eat from 7pm the previous day until 10am when they gave her the drink.) She laid still as a board raising and lowering her arms on command while a huge, loud x-ray machine moved over her entire body. (It helped that she was able to watch Dora the Explorer during this, but I was surprised it didn't scare her.) I had prayed it would go well, but I seriously could not have asked for more. I was the proudest mama there ever was. I tear up thinking about how good and joyful she is despite everything she goes through with this life challenge.

Our little Hoodwinked girl.

At the pediatrician's office. We frequent this place.

We let Emma pick out the pumpkins this year.
They were small, but mighty, kinda like Emma.

Following that, the next 4-5 days she did every.single.thing.I.asked. Let me repeat, every.thing. It was like Heavenly Father was blessing me and her for her goodness. Not that Emma is bad, she is just one of the most lively, spirited kids I know. She likes to run free. She likes to kick against the pricks and go against the grain. That's her nature. Plus, she is a toddler. She likes to feel, touch, see, run and she does it with excitement and emotion, unbridled and unrestrained.

With sun against her back, eyes closed, and feeling the wind in her hair.
I love that she is throwing her arms behind her to fully capture the moment,
and holding a pink, Publix balloon.

So, for her to go 4-5 days without a timeout, or me asking her to do things not more than once or twice, was a startling anomaly. And a good one. Let me note, after the 4-5 days was another story...

At the E.R. after getting her hand caught in the car door.

No broken bones! Phew!

Big "ouchie"...she is now deathly afraid of cars and loud machines.

Puddle jumping.

"Bucket"--referring to her Halloween bucket of candy--is a phrase we hear often now.
Oh dear.

Using the picnic table in our living room as a slide.
Our frequent rainy day activity.

Collecting acorns. Emma has a legitimate collection in a mason jar.

Sleeping: Emma had been waking up in the middle of the night crying the previous couple of months. I rocked her a little and then she would go back to sleep. Some nights, she said she was afraid of something. She says, "Yike(s)!" when she sees or hears something spooky. She has a fear of shadows sometimes (she points them out often), and lately, the dark, in general. We put a nightlight in her room. That seemed to help and she hasn't woken up again. Update: We took the light out. She still yells out sometimes, but goes right back to sleep.

Nap time hair.

Parenting Emma: It has really been a joy to be around her. I am so excited to see what new things she comes up with daily. She laughs so much and loves horsing around. She makes us laugh, too.

Using Daddy as a human slide.

Sometimes, the toddler days make me lose hair (like when she will not sit still/quiet in church or when she doesn't listen to me and tries to drown herself in the ocean). This girl has some sass in her. BUT...

She found an old baby headband and put it in her hair herself. Look at that face! 2 going on 14...

... most days, it's sheer bliss with her. I really mean that.

Emma is really creative and has a wonderful imagination. For example, she sees objects and shapes in everyday things. I wished I had pictures of all of them, but I'll try to remember and explain some of them--1) I was vacuuming and the cord twisted into a loop. She pointed to it and said it looked like a hot air balloon. Not just a balloon, a hot air balloon. Ha. 2) She looked at a rotisserie chicken carcass and said it looked like a sailboat. It did because of the string that they used to tie up the legs and it was upside down. 3) She arranged her tortilla chips in to the shape of pig.

Pig creation she made all by herself!

4) She put three pieces of jumbo chalk into a bundle and said it looked like a triangle. 5) She balanced a deck of cards on some toys and called it a spaceship. 6) When I left her trains at home, instead of being upset, she named one of her toy cars "Finn" (from Thomas the Train) because she didn't have her trains with her so she pretended the car was a train. 7) Joel was ironing and balanced his slacks, tie, and a hanger on the top of the back of a chair. She said it looked like a helicopter. 8) Emma saw the number "80" handwritten on an oil drum. She said the "0" was an acorn. It really did look like an elongated acorn. 9) She stacked our pumpkins and called it a snowman. 10) She saw a ripped candy wrapped and said it looked like a rocket ship. 11) She looked at the two light rays coming out of a plug-in nightlight and said it looked like bunny ears. --I wished I could remember them all, but those are the ones off the top of my head.

Another craft hour masterpiece.
I cut out the shapes and she glued them herself.

She still sings...and dances, which is super cute. She came home from church singing a song Joel and I have never taught her, "Ring Around the Rosie". I was floored because she only missed a couple of words and I'm pretty sure that Nursery is the only place she hears that song. She dances/sings to all the theme songs of her favorite shows: Dora the Explorer, Thomas the Train, Pocoyo, Super Why, Mighty Machines, Daniel Tiger's Neighborhood, and Curious George.

Socially, Emma loves play dates with other children.

Emma loves to play with older kids, too.

She loves going to friends' houses and playing with new toys and children.

I feel like since I have been pregnant with David, I have not gotten Emma out to do as many things as before, but I'm slowing getting back into the swing of things. We have made a few new friends, and were able to visit with old friends, these last couple of months.

Cousins.

When she first sees kids, she has a hard time containing herself with all of the exciting running through her. She has a hard time sharing, especially with her brother, and will sometimes hit or throw things on the floor, or have a tantrum when leaving somewhere. (We're working on that.) But overall, she is quick to forgive and forget, laugh, have fun, and play.

Emma spends an insane amount of time "busying" herself. I would have never imagined in my wildest dreams this would be the case a year ago. Now that David is around, Emma plays by herself a lot. I mean, we still do playgroups/outings/therapy and get out every day on stroller walks, but she has to do something during the 4 hours or so a day that I am either feeding, bathing or diapering David when Joel is not around.

Monkey see, Monkey do. Or should I say, baby Lion?

Surprisingly, knock on wood, she doesn't get herself into too much trouble. Most of the time, she gets hold of a marker or highlighter and colors all over herself, the house, or the couch cover, nothing big, that's what washable markers are for! I've also found her in the kitchen on top of the counters with no chair in sight. (How does she do that?!) Or, she ransacks the whole house and pulls anything out of drawers that she can find, usually clothes or junk drawer items or odds and ends, stuff I haven't seen for weeks or have been looking for. This also does not bother me, really, because I just put it back. Sometimes, I find her with things in her mouth (she likes to roll around in her mouth these specific animal beads we got from Hobby Lobby...bothersome choking hazard). But usually, she is just laying on the floor playing with her trains or some Dora toys that go with her super awesome Dora Talking House we got her. She is a very self-directed and calm child at home. Oxymoron is that she doesn't like to sit still.ever. BUT she can play with the same toy for hours, and months in a row, and never tire of it. I heard this is pretty uncommon for many toddlers. (She still plays with toys she's had since birth. Hey, "if it ain't broke...)

(On a side note, we went garage saling and we hit it big. I love garage sales. They make me happy and each time I go, I ask myself why I ever pay for anything new at full price from a store. Almost all her toys are from garage sales. I love it.)

So, back to the not sitting still, and overall behavior...Man, she is so on the go.

She is loud in quiet situations. She has a hard time listening. I mean, this is nothing new, but right now, getting her to listen to us is pretty difficult when she wants to do something else.

I know this is normal toddler behavior, but I need some major discipline reform. Timeouts are not too effective anymore and I need to be better about just asking once, then disciplining, and making sure I follow through and am consistent. Moms out there: What do I do? What do you do?

On the other hand, she is also such a polite kid. She always says "thank you" and "you're welcome". (Often, but usually needs coaching, she says, "please".) This makes me feel all warm inside. The last thing I want is an ungrateful child. She is genuinely and whole-heartedly thankful when she gets something.anything. I should take lessons from her about gratitude.

"Thank you, Mama, for my new chalkboard. I love it more than Thomas."

She is also so loving. The whole way to and from the beach the other day, she kept saying "Mama. Mama?" "Yes, Emma?" I would reply. "I love you, Mama." "Mama, I love you." Over and over. And this is why it is hard to be strict with her--because when I am trying to be upset with her, she melts me in an instant. Doh.

On cuddling--Emma allows me to cuddle her sometimes when she is watching a show. She is still and will even tolerate me holding her hand. And sometimes, if I am lucky and all the stars align, she will lean her head against me and perhaps even stroke my arm hairs. Meanwhile, I take advantage and wrap my arms and legs around her like a mother octopus. Maybe this is why I let her watch TV so much; I crave her affection. She is just always on the go. The other time is during the day, usually before or after naptime. She runs into my room and I find her under my sheets giddy, kicking her legs all crazy Pride and Prejudice style (modern version with Keira Knightley), and I just hop right in there next to her. That usually lasts for about 3.2 minutes.

On the other hand, she cuddles David all the time. I am jealous.
(Yes, she took off her pants and is stretching out her shirt with her knee.)

Words/phrases she is saying:

1) okaay (not as drawn out as before, now with an upward tone--when we ask her a question, like if she wants something, or if she is coming out of timeout and we ask if she is going to be a good girl and listen to mama)

2) Yike! (followed by a physical shake/shudder...This is her newest and most common one. She used it when startled, afraid, when she sees shadows or "ghosts", when she hears a loud noise, when there is a wild kid around--it's a general use kind of phrase for her and applies to many of life's situations really.)
3) Hold me (she's switched from "hold you" - sad, as it marks her baby-ness slipping away)

4) mighty machines...dum dum...mighty machines...(singing to herself)
5) Daybed (David)

6) thank you, mama, you're welcome (Yes, all in a row like that. She doesn't wait for the reply of "you're welcome". She just says it for you, or vice versa. It makes me laugh.)