Monday, August 22, 2011

EGD 101 / Tyler's scopes

Tyler's celiac serum panel came back abnormal so we were finally referred to a GI (gastroenterologist). The only official way to diagnose celiac is to have a positive intestinal biopsy, hence the need for a GI. After hearing good things about Dr. McOmber we set an appointment. We met with him at the end of Febrary, Tyler had his first EGD and FlexSig procedure the beginning of March.

Skip over this part if you already know about EGDs and FlexSigs. Quick medical lesson for those unfamiliar with the process: EGD is short for Esophagogastroduodenoscopy. [Translation: they put a tube down the esophagus, through the stomach, ending at the beginning part of small intestine. Along the way biopsies are taken. The biopsies are then viewed under a microscope to check for eosinophils. A normal biopsy should have, at very most, 15 eosinophils per high powered field.] FlexSig is short for flexible sigmoidoscopy. It's, as Mister C would put it, a "violation from the other end" to get colon biopsies.

Tyler and I checked into Phoenix Children's Hospital (PCH) and put on his purple gown. We waited and waited. We had a pre-op consult with Dr. McOmber and the anesthesiologist. We walked to the GI procedure room, I gave Mr. TyTy a kiss, then I was asked to go to the waiting room. I was a bit taken back cause in the pre-op consult the anesthesiologist he said I could be there until Tyler fell asleep. Instead the anesthesiologist decided to pry Tyler from my arms, Tyler screamed like only the youngest of 5 children can scream, and he said, "You can leave now, the door's over there."

The unpersonable anesthesiologist would soon become the least of my worries.

I waited in the waiting room about 30 minutes before they were done. Doctor M came out carrying a few sheets of paper with pictures on them. He showed me the pictures.

1st scope, March '11

Me: "Ooooo.... I'm not a doctor but that doesn't look very good." (Not knowing what swollen body part was photographed.)

Dr. M: "Well the good news is I'm 99.99% sure we're not dealing with celiac. The bad news is this picture. This is Tyler's esophagus. See the lines and the furrows in the first picture? Those shouldn't be there."

{Instead awkward pause from me. I hadn't read up on "esophageal furrows" prior to the procedure. I'm feeling kinda stupid, err, uneducated at this point.}

Long story short, there was certain for Eosinophilic Esophagitis but we had to wait for biopsy results for true diagnosis. Tyler woke up screaming before he was wheeled into the recovery room. We waited 45 minutes to ensure he could tolerate fluids. Tyler and I left the hospital, me a bit perplexed but ready for this allergy thing. Mister C and I could totally handle a kid with a few allergies. We just make sure we don't feed him shellfish, egg, or peanuts right?

HA! Boy was I was naive.

Test results came back the following week. Tyler had 57 eosinophils per hpf (supposed to be lower than 15) in his esophagus and some present in his colon. Tyler's body "sees" food as an infection and sends white blood cells to attack his esophagus and colon.

Add allergist to Tyler's list of doctors.

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We were referred to an allergist, Dr. Shimamoto, and Tyler started an elimination diet. We started by eliminating the top allergens in hopes Tyler's appetite would increase. An increased appetite is usually a good sign that reactions are under control. Tyler's appetite decreased. We began an elemental diet. The only thing he was allowed to eat/drink was an uber expensive hypoallergenic formula you can't buy at regular stores. (Expensive = $50 for a 14.1 oz can of powder formula. One can lasts about a day and a half.)

His appetite continued to decrease. I took him for frequent weight checks. He would gain a few ounces, lose some, gain a little more. It was a vicious cycle both physically and mentally. Enough was enough and they finally placed an NG tube.

The NG tube was a temporary fix. 4 weeks later the NG tube was replaced with a g-tube and they scoped him at the same time. This would be an elemental diet baseline reading.

2nd scope, June '11


A nice, smooth esophagus. :) Good job, Tyler! They took 3 biopsies at different locations in his esophagus. His eosinophil counts were 1, 6, and 1. (I blame it on a chip his 3 year old brother gave him. "But Mom, Baby TyTy liked it.")

We began introducing foods again. We started with green beans. We added applesauce. We added pears. When I say "we added" I mean we would give him the little bit he wanted to eat. A good day would consist of 2 baby spoon bites, 2x a day. Nowhere close to what a healthy toddler 14 month old would want but for Tyler it was good. We introduced sweet potatoes. Peeling, slicing, and baking sweet potato chips. He'd eat one, we'd get excited.

Then came the next scope.


3rd scope, July '11


Doh! One step forward, two steps back. We'll get the results on Monday.

Tuesday, August 16, 2011

New Post Coming

It has been a whirlwind at our house since Tyler's g-tube was placed.

In a month and a half there was: g-tube put in, washing machine out of commission for a week, OB visit, bought new washer, California trip, 3 of Tyler's 4 older brothers started school, attempt to get back on schedule, 2 GI appointments, follow-up visit w/pediatric surgeon, allergist visit, 15 month well-check w/pediatrician, homework for 3 kids, feeding therapy evaluation, another OB appointment, multiple phone calls to PCH billing department, trying new foods, battling with Apria (they suck!), numerous calls to insurance, Tyler refusing foods, and a husband working 12+ hour days for more than a week straight has not left much time to blog.

New post coming soon (just in time for me to start school on Monday).

What fun. :)

Sunday, June 19, 2011

? (for other EE moms)

The GI wanted to wait until after Tyler's 2nd scope and "personal baseline" before starting food(s) that had reactions on the patch test. The scope is done so we started apples last night. He ate some. By some I mean 2 tablespoons. We tried again this afternoon and he took a small bite then wasn't interested. He refused the apples by turning his head while also pushing the spoon away with his hand. It's crazy how quickly all the memories came rushing back from when he was 9 months old. We are lucky though, at least he isn't screaming the second we put him in the highchair.

My question is.... how aggressive do we get with food trials after being on an elemental diet for 4ish weeks? I am not sure what he is trying to tell us. I don't know if it is from negative food association or if he is starting to react internally and doesn't feel good. He is 3 days post-op of g-tube placement so not having a hearty appetite is expected. I am just wondering when do we let him to guide us and when do we push a little more? (Past experience has shown that if we let him guide us, he probably wouldn't be alive cause he has always hated food.)

Friday, June 17, 2011

G-tube (PEG) is in, we are home

All things considered, yesterday's surgery went pretty well. I'm extremely sleep deprived but thought I'd share some pics from yesterday and today before I go crash for a few hours. What a difference between days 1 and 2.

Day 1


Tyler w/diapered bum hanging out.
Sometimes you can't take the father out of the boy.



A perfect tummy.


A quick pre-op picture with Daddy



And Mommy



After the surgery (he was a bleeder)



Later that evening, hooked up to morphine drip

- - - - - - - - - - - - -

Day 2


He was crabby so I let him play with the camera just so I could change his diaper. (Not so bad considering I hadn't showered or put on make-up, running on 1.5 hrs of sleep.)


Waiting for the pain meds to start working.


His crib (aka The Birdcage)


Him back to being playful.

Sunday, June 12, 2011

Thursday is a Big Day

I am still working on a post with the details of Tyler's GI appointment last Tuesday but my brain isn't cooperating enough for me to get it posted tonight (from mental exhaustion or pregnancy brain, I'm not sure which).

For those whose who didn't get the message I posted on facebook, Tyler is going in for his 2nd scope and is getting a g-tube placed this Thursday. I am confident Dr. McOmber and Dr. Graziano (his pediatric surgeon) will take care of our sweet boy. I am not sure my head has fully absorbed the reality of our boy getting a surgically placed feeding tube in his belly in 4 days. Can it be removed when/if things improve? Certainly. The thing that gets me is him having a permanent exterior scar. Somehow it psychologically takes me to a place I hadn't ever anticipated being when we initially received his diagnosis months ago. Truly ignorance is sometimes bliss. Interesting how quickly the human mind can learn/accept new things when your child has a chronic illness don't you think?

Friday, May 27, 2011

Quick Weight Check / Allergist Visit Update

Tyler had an allergist visit yesterday so I figured I'd kill 2 birds with 1 stone and do a quick weight check at the GI's office since it's less than a mile from the allergist office. (The allergist doesn't have an infant scale and the plop-him-on-the-scale-with-clothes-and-a-diaper weight skews any progress.) The scale read 19 lbs 12.4 ounces, a +7.4 oz gain in one week. Wahoo! To say the ng tube is working is an understatement. Usually Tyler would take a month or two to gain that much weight.

Dr. Shimamoto was pleased with the gain and would like to try apples or pears next week. He is hoping to have Tyler on a couple foods before we do another scope. Originally we had an appointment to see McOmber in July but I got a call from McOmber's office this morning saying they could get us in June 7th. I can't wait to see what the scale says in a week and a half.

Friday, May 20, 2011

Tyler's new look

Through the nose, over the ear, then taped to the back.




Placement wasn't a fun thing for me. The nurse has done it for 19 years, only hit the airway once. "Chances of doing that are slim."

She does it perfectly and quickly. Mister C gets it down with no problem. I get halfway and pause because I feel something hard. I freak out and pull it out. The nurse asks if I saw what happened to him. I was so focused on how it "felt" going down I wasn't paying attention to his face. Apparently the nurse and Mister C noticed he started turning a blue-ish color. (I hit his airway.) I had to try it again and now Tyler is beyond pissed. I get it down and he is screaming bloody murder. We are so focused on consoling him we don't notice all the formula in his stomach was emptying on the table behind him.


Mental note: Make sure the end port is closed when inserting.

Here is to hoping he won't pull it out when he's in his crib.



We had to do syringe feedings last night because the pump isn't getting delivered until this afternoon. So far so good.


*Post edit: The tube lasted a little over 48 hours before he yanked it out. His brothers now get to see firsthand how "fun" it is to put a feeding tube in.

Thursday, May 19, 2011

2 week wait is over

We had our two week weight check last Wednesday. Tyler was +4.5 oz in 2 weeks. Yay!

Around the same time as last week's weight check he decided he isn't as hungry as he ought to be. Yesterday we struggled to get him to drink 12 scoops, not even close to his minimum of 25/day. Went in for a weight check this morning and he was -1 oz from last Wednesday.

And still not hungry.

He is having an NG tube placed this afternoon. Look for a follow-up post later today or tomorrow. Fingers crossed he does well and he starts plumping up.... soon!

Thursday, April 28, 2011

{Bad words, bad words} + a 2 week wait

{Bad words bad words bad words} seems to be commonplace in my mind lately.

Here is a glimpse of the latest happenings....

Tyler needs to consume 1,000 calories a day. With his current formula concentration he should drink approximately 40 ounces a day. On a good day he drinks 25. Mister C wakes Tyler up during the night to dream feed another 120+ calories (5 ounces) into him. Sometimes he is successful, other times he is not. We compensated for the lack of calories by adding a little bit of oil to his green beans and soy diet. He hates soy. I spent time squeezing edamame out of the pods so they were ready to eat just in case he changed his mind. He hasn't. I cooked up some tofu stir fry drizzled with gluten free soy sauce. He hates tofu.

Now he hates green beans. Judging solely by his behavior, it appears green beans may actually be a trigger food.

So we go back to square one and he is only consuming vanilla Elecare. (Insurance is being a nightmare. That in and of itself can be a post.)

Life is grand. :)

----------------------------------------

We had a weight check with Doctor Laks yesterday. Tyler has lost weight since we saw her at the beginning of April. The current diet should have eliminated his eosinophilic triggers and his appetite should have increased. He should have put on a little weight but he is Tyler.

The GI wants to wait 2 weeks before we place an NG tube. His thinks giving Tyler a full month of "clean" foods will be beneficial, Laks thinks it'd be beneficial for Tyler to gain weight ASAP. She is not as happy with his lack of appetite as we have become. (Have I mentioned I love her?)

So we wait 2 weeks. Fingers crossed he gains weight or there will be two unhappy women (and a father) making some phone calls.

Wednesday, April 13, 2011

Patch Test Results

Tyler was happy today.




Happy because these things

were coming off.


The nurse came in to take the patches off. We were disappointed because initially he had more of a rash/reaction to the darn tape than the foods.



She removed the patches then outlined where the foods were and numbered them.


The nurse said Tyler was/is her best patient because usually kids cry and wiggle during this.



We have to watch these circle for 5 days, noting daily changes.


Then we waited to see Dr. Shimamoto.


Forget books, the cell phone has buttons I can push.



By the time Dr. Shimamoto got to us some of the negative patches turned positive.

The Results...

Safe foods
Egg (doctor isn't 100% certain about this one)
Soy
Green Beans

Could be safe but had irregular reactions
Milk
Peanut
Oat
Corn
Potato

Positive Foods (don't eat)
Wheat
Ham
Pears
Sweet Potatoes
Applesauce
Peaches
Bananas

Uber Positive Foods
Rice (Apparently he can't be as Mexican as we thought. What Mexican eats beans without rice?)
Chicken
Beef


Tyler's diet for the next 6 weeks will consist of Elecare (super expensive formula), green beans, and soy.

Don't be jealous!

Tuesday, April 12, 2011

Scratch Test

We went to the allergist on Monday to get the patch test patches applied. I am an idiot and somehow didn't realize they were going to do the scratch test at Monday's visit and not during the following appointment. Minor detail I suppose.

This is the scratch test.



Stripped down to a diaper, first clue bad things are in the immediate future.




"If I stare them down they won't hurt me." Didn't work but was worth a shot.




They mark his arm.



Then the other arm.




Tiger baby is marked up and ready to go.





video
They use a plastic stick with small prongs at the tip (dipped in food) and twist it against the skin. (Apologizes for the sideways video. After waiting 10 minutes for it to upload you are lucky you are still getting a post.)




18 different food samples + 2 controls


Wait 15 minutes.

Come back to read the results (=see how big the bumps are) and........

Nothing! Absolutely. Nothing. He reacted to the positive control (which he should have) but a big fat negative on everything else.

1 set of RAST results came back. He got a green light to eat quinoa, sweet potatoes, and pinto beans. Daddy is excited Tyler can "be a Mexican." (
I am not being racist, I am using my husband's words. If you ask DH what nationality he is, he will tell you he's Mexican.)

We asked the doctor if it is common to have negative scratch results. Unfortunately it can be common. Urgh! The good part is that we don't have to worry about anaphylaxis.

Then they started the Patch Test.




Patch Test = Food stuck on small metal disks and taped to your back for 48 hours.



"Help me, Mom! I've got tape stuck to my back."


Luckily the 48 hours is almost over because the smell isn't so pleasant. Nothing like ham, beef, chicken, wheat, soy, egg, pears, bananas, and 10 other foods taped to your back. Yum yum! :)

By the end......



He was done.

Saturday, March 26, 2011

The History Part 1

Pregnancy with Tyler, not so fun. During the entire pregnancy I could not drink milk, eat any nuts, peanut butter, eggs, cheese, tomatoes, and any form of meat. Being that it was 100% different than my other pregnancies (all of which resulted in 4 boys), we fooled ourselves into thinking it was a girl.

Not so much.

We fooled ourselves into thinking we were entirely prepared for whatever Baby TyTy threw at us because we were "experienced" parents.

Not so much.

He was born via c-section (#5), doctors were surprised to find him feet first. He started crying while part of his head was still inside my stomach so the doctors hurried to squish his head out as fast as they could. Initially he had some fluid in his lungs but was fine within 24 hours. (Too bad my new abdominal hernia was a different story.)

Then the screaming started.

BEHAVIOR: He would scream. And scream. Then scream some more. He would scream at random hours. It was never at a consistent time or every single day so we couldn't pinpoint the cause of the madness. Our eldest had colic so we thought WORST case scenario he would outgrow it within a few months. Tyler again would prove us wrong.

APPETITE: Tyler was/is not a big eater. He was a decent nurser but would only eat enough to subside his hunger pains but never enough to drain me/stuff his belly. We attempted dream feeds (where they nurse while still asleep) but he refused those too. It was very unusual for us to have a baby who did not like to eat.

GROWTH (weight in percentiles): Born 8 lbs 1 oz (just over the 50th percentile)
- 1 month: 80th
- 2 months: 75th
- 4 months: 60th (Maternal instinct kicks in, doctor says it's because I am breastfeeding and Tyler needing to start solids. I wasn't so sure and opted to wait.)
- 6 months: 40th (Seriously? Doctor says, "You waited too long to start solids and now we have to play catch-up. Don't worry, he's fine." I know something is off.... Mister C and I aren't small people and, up until this point, had yet to create a small child. Tyler started solids. He was NOT interested. He would either nurse or eat solids but not both.)
- 9 months: 20th (Doctor: "He dropped again. Does CF run in your family? Maybe it's because he has an ear infection. It's possible his thyroid could be off. Let's run some tests. Do not worry though, he is too happy to be sick. Stop nursing and switch to formula and he will gain weight.")
- 10 months: 18thish (Maternal instinct: Something is seriously wrong! "We have to pin him down with 2 arms and shove food in his mouth. HE WON'T EAT!" / Doctor: "Blood work came back normal. It's a control thing. Do not force feed, only 3 meals + 1 snack. Trust me, he will be hungry and will eat again. See you again in 2 weeks.")
- 10 1/2 months: 8th (We don't force feed and he loses 3/4 of a pound in 2 weeks. Pediatrician thinks I have gone off the deep end, feels there is no reason to worry. Doctor: "Maybe he is not going to be a big kid/eater. You should never compare your children; even though all [four] of your other children are big for their age, he is just a small baby. If anything changes come back in ASAP." Strong words for a kid who is just 'small' don't you think? :)
- 1 day later: Tyler drank more than 5 oz at one time, first time ever. I do the happy dance. I lay him down to sleep and within 30 minutes I hear gagging coming from his room. I go in and find him half asleep and projectile vomiting. I call the doctor.
- 1 day later:- He has now dropped to the 3rd percentile. (Thinking perhaps our other pediatrician is not picking up on the urgency of the matter we see a different doctor. New Doctor: "He is completely healthy. Look at him.... I am holding him and he is not acting sick. He is fine, stop worrying." After some much needed convincing and pushing from my friends I become a strong advocate for my child and make an appointment with a pediatric gastroenterologist without pediatrician's knowledge. {I felt like an ignorant parent when I made the appointment; Receptionist: "And the reason for Tyler's appointment?" / Me: "Failure to thrive and not having an appetite. He's not hungry so I know something is wrong."} Appointment set.)
- The following week: Pediatrician calls me. (Old Ped: "We finally got the last set of lab results back and it appears he has something going on internally. His celiac serum level came back abnormal. You need to see a GI doctor. Don't worry too much about the results though because they can be a false positive [abnormal]." / I had no words. At last I am not crazy.)
- 10 3/4 months: 3rd percentile. Tyler sees Dr. Mark McOmber. (He mentions {without trying to speak negatively about the pediatrician} with Tyler's symptoms and behavior we should have come to him months ago. I love Dr. McOmber.)

-----------------------

History Part 2 to follow.

Thursday, March 24, 2011

Coming Soon

I'm working on a post regarding the latest happenings with Tyler and the world of EE.

Stay tuned!