Slow and Steady

I spoke with the team in Cincinnati and they still don’t have the results of his cilia lab work. We are also still waiting to hear about our referral to the GI team in New Orleans. Locally we have been asked to participate in a newly developing asthma clinic with Memorial Hospital. I said sure and set up our first appointment in two weeks. 

Stanton is slowly beginning to eat.  It is a slow, arduous process….but with tons of encouragement, he is sustaining his weight finally!  Stanton continues to refuse his Elecare, no matter the container.  He is, however, now drinking about 5 ounces of chocolate milk in the morning and at night.  So, I’m hiding a scoop of Elecare and his medicines in the chocolate milk.  At least he’s getting a little! 

In speech therapy our therapist is working diligently at food chaining french fries. 

This has gone surprisingly well.  We started with fast food fries, then introduced varieties of fries, adding a new one each week.   

  

The plan is to progress to steak fries, then a potato and eventually mashed potatoes, etc. 

At home we’ve taken this concept with hot dogs and Stanton is now eating a sliced hot dog and a half of a corn-dog!  This is huge for a child who used to never put anything in his mouth!  We are thrilled with his brave spirit and pray this slow, but steady progress will continue.

Catch Up

I have so much to say and such little time these days!  I do apologize for this way overdue post.  So many of you have asked about our trip to Cincinnati and our recent hospitalizations. Thank you for your kind words, prayers and positive thoughts.  It’s been a tough start to 2012, but we are paddling along, taking things in stride as they come. 

Just to put things in perspective:    Our sweet baby girl is now six months old.  Stanton has been in the hospital four times since becoming a big brother!  We spend the weeks in between hospital stays recovering, rebounding, playing catch up and trying to restart some resemblance to a normal routine, only to find ourselves intertwined in chaos all over again.

Stanton was hospitalized the first of February with a severe asthma attack which lead to an upper respiratory infection.  Two weeks later we traveled to Cincinnati for our week of testing at the Children’s Hospital.  Stanton saw various members of their top rated aero-digestive team including pulmonology, ENT, gastroenterology and the feeding team.  Our first appointment was a video swallow study.  This involved Stanton eating a variety of things mixed with barium while being videoed and x-rayed.  This is super complicated for a child who doesn’t eat much and is super picky about what he will eat.  If it’s the wrong color or texture – it’s not going in his mouth.  Mixing foods with barium changes both the color and the texture…so it was an interesting experience to say the least.  I was able to get him to eat some pudding and some peanut butter.  It was enough to show his swallow and the test verified all was normal – good news!   We spent the rest of the afternoon registering for all the various procedures to come. 

Stanton had a sedated CT scan of his respiratory system the following morning.  That same afternoon we met with the pulmonologist and reviewed the CT scan and his history of serious respiratory illness.  The pulmonologist said his symptoms and hospital stays didn’t match the CT scan.  The scan didn’t show much damage to the lungs or bronchs, only a bit of scar tissue which did prove his continued chronic episodes….but didn’t explain them.  

The next morning we checked into the hospital for the aero-digestive team scope.  The ENT, pulmonologist and gastroenterologist all preformed the scope together, each looking at their area of the body.  Anatomically, everything looks normal and is functioning as it should.  Biopsies were taken and we are still waiting for some of those results. The ENT said Stanton’s throat is functioning well.  He did remove Stanton’s ear tubes as they have been in for two and half years.  The pulmonologist discovered that Stanton’s cilia in his upper airway were stiff and unresponsive during the scope.  He took a biopsy and sent them to the hospital’s in house lab where they remained unresponsive.  So Stanton’s cilia have been sent to a lab overseas for further testing. We still don’t have those results. 

The gastroenterologist also took some biopsies of his esophagus and stomach.  He then inserted an impedance probe which Stanton kept for the next 20 hours.  The impedance probe is a small tube that goes up the nose and is threaded down into the esophagus.  It’s attached to a small computer box that Stanton had to “wear” on his shoulder (like a purse). The probe records changes in flow within the esophagus, the pH of the esophagus and other common reflux symptoms.  It also shows how far the reflux goes.  While Stanton had the probe I had to push a button on the computer box if he coughed, burped, gagged or threw up.  I also had to push a button when he was eating/drinking.  Stanton’s impedance probe showed that he refluxed 68 times and 54 of those times reached his throat.  This just showed us that he still has very active, severe reflux.  Even though he hasn’t vomited since November, he is still dealing with this disease.  So, the gastroenterologist put him back on prevacid. 

After we checked out of the hospital we met with the feeding team.  They pointed out that the list of foods Stanton will try is three times as long as it was this time last year.  We all understand that he is being sustained by his medical formula, Elecare and food is still experimental for him.  However, his weight was good so they encouraged us to try some tough love as Stanton will only drink his formula out of a baby bottle.  Part one of the tough love is the suggestion of putting an NG feeding tube through his nose the next time is hospitalized and on a feeding strike.  He hated the impedance probe down his nose due to the tape on his face….so the feeding team thought that might be a wake-up call for him.  Stanton will drink other things from cups and straws, but not his formula, so the team suggested we begin offering his formula in a cup just to see what would happen.  They also encouraged us to find a local feeding team and GI.  They suggested we look at the various options in New Orleans.  After comparing the pediatric programs in New Orleans, we’ve decided to try the New Orleans Children’s Hospital.  They have a feeding team with a strong reputation.  My pediatrician is in the process of setting up a referral to one of their gastroenterologists.    

Since we’ve been home Stanton has been in the hospital again…but it was a short stay so the doctors here did not do the NG feeding tube.  We have started fading out bottles and of course Stanton refuses to drink his Elecare now!  Initially I was offering the cup of formula and as soon as it was refused, I’d give it to him in a bottle.  I faded this out as time went on with no progress.  I realized that as long as the bottle was an option, that would be his only option.  His bottles are old and all starting to leak and drip.  This has been a source of frustration for Stanton. So, I told him that if a bottle was drippy, we’d just throw it away because it was old and not good anymore.  We have thrown away all but about three bottles, which I’ve hid so that his only option is now a sippy cup or cup with a straw.  Fast-forward to today…..this has totally backfired on us!  He is completely refusing the formula in a cup.  Stanton got really sick this past weekend and ended up back in the hospital so I gave in and dug out a bottle.  He promptly stated that bottles are for babies and he is not a baby.  Ugh….so now he won’t even drink it in a bottle anymore either!  Elecare has 30 calories per ounce and Stanton was drinking about 32-36 ounces per day.  This means that his intake is down an average of 900 calories per day now and he isn’t really replacing them with anything substantial.  He has re-lost all the weight he just regained!  I’m feeling frustrated and worried. I find myself spending my whole day trying to get him to eat and drink.  It’s completely exhausting and beginning to feel like a no win situation.  I appreciate all of your thoughts and support as we continue down this unanswered path.

Make a Difference

Stanton has been healthy for the last six weeks!  We have made a couple of changes with his medications including adding Claritin , dropping Miralax to every other day and removing Prevacid. The Claritin seems to be working against the runny nose and mucus build up while the Miralax is keeping his system from backing up. Stanton has been on Prevacid since he was 10 weeks old.  The buffer compound that we use to mix it is no longer available, so our pediatrician agreed that now would be a good time to stop and see.  The longer we go between illnesses, the more courageous he becomes with food. I’ve seen a real increase in appetite without Prevacid.  I’ve been astonished as I watch Stanton eat and enjoy macaroni and cheese, carrot soufflé, hotdog, peanut butter, yoo-hoos, cinnamon rolls, pound cake, banana and granola.  In therapy he’s actually licked a variety of foods and textures without much complaint.  We are still holding our breath, waiting on the crash….but so far, we’re really enjoying a healthy Stanton!

The film crew for Abbott nutrition came over on Sunday to meet us and get to know Stanton.  He seemed really comfortable with everybody and spent the afternoon building legos, reading books, crashing blocks and playing space with the crew.   They were all super sweet and really great with him.  Luckily, the day of filming was a nice day and the crew got some great footage of Stanton playing outside being a wild boy.  They spent the afternoon filming us playing, reading, eating mac n’ cheese, being a big brother….it sort of felt like we were on a reality TV show as a camera man just followed us around.  Then it was time for make-up!  The make-up artist airbrushed make-up on and really pampered me.  I don’t usually wear lots of make up, so it was strange….but I must admit – fun.  The crew explained that they wanted us to focus on how Elecare has made a difference in Stanton’s life.  John and I took a trip down memory lane and looked through old pictures remembering that before Elecare, Stanton threw up at least twice an hour.  He spent his days lying around with no energy.  He was super emotional all the time and never felt good.  John and I took turns sleeping in his room as Stanton would wake up several times during the night to throw up.  Once we discovered Elecare, Stanton was already 20 months old.  Within the first few days of introducing this amino acid formula to Stanton, his vomiting decreased SIGNIFICANTLY from an average of 32 times a day down to 3 or 4 times a day. We realize that Elecare changed our lives by giving us a better quality of life.  During our filmed interview, John and I basically focused on this part of our journey.  We realize that Stanton has other issues, and we still don’t have a diagnosis, but we didn’t get into those issues as the point of the filming was about how his nutrition, health and feeding have improved due to this medical formula.

Abbott will use the footage to create a patient testimonial for medical conferences.  They will also put a short 90 second segment together for their website, however, this segment must be approved by the FDA – so who knows when that will be ready for release and what it will look like.  As soon as we have a link – of course I’ll share it with you! 

This is Stanton "on set" as we tested the sound

In the midst of dealing with the film crew, Cincinnati Children’s Hospital called.  They have scheduled Stanton for the week of February 20^th.  In addition to meeting with several specialists, he will also have a swallow study, a CT scan, a feeding evaluation, x-rays, an exploratory surgery/scope and internal biopsies with the otolaryngologist, gastroenterologist, and pulmonologist, a ph probe inserted to measure acid levels and follow up appointments with all the specialists.  It will be an extremely stressful, but hopeful week.  I ask you to all send us positive energy and prayers as we begin to make our travel arrangements and prepare for all the testing.  It is always an emotional time for our family…the anticipation of what’s to come, the hope for answers, the reality of process, our history of no answers, the financial burden.  It’s all part of our fight for Stanton’s continued health.  We do this to ensure that he will grow into who is to become and make a difference in this world. 

Featured

I'm so excited!  I just got off the phone with a representative for Elecare.  This is the medical formula Stanton has been on since he was 20 months old.  They ran across my blog and would like to feature Stanton's story on their website!  So, a film crew, make-up artist and interview person will all come and film our family this Sunday and Monday!  It's so exciting and a bit crazy.  I hope Stanton cooperates and that we can appear calm and natural.  Once the segment is done, I'll be sure to announce it here!

Cincinnati Children's Hospital also called today and said the earliest they can schedule Stanton is the end of February.  I said that was fine, so we should have definite travel plans soon. 

The new year is up and running....I do look forward to answers coming this year!

What Can You Handle?

“I know God won't give me anything I can't handle. I just wish he didn't trust me so much.”    ~ Mother Teresa

Stanton continues to have a respiratory crash every three weeks.  It's difficult to handle these illnesses so close together and yet so predictable.  We have one week of horror, then two weeks of good.  This time around it's put us in the hospital.  Stanton has pneumonia that he just can't shake.  It seems to be lingering in his lower left lung.  It's sad to admit, but being at the hospital has been a bit of a break.  Here, I'm only mom.  My only job is to comfort my child.  I can focus all my energy and efforts on him and his needs.  This, I can handle.  The nurses and hospital staff take care of everything else....the medication, the breathing treatments, even the food and clean sheets!  I am thankful to be in a place that is comfortable so I can focus on my job...being mom.

The pediatrician on call has witnessed what I deal with on a daily basis:  the fight to get Stanton to take anything by mouth.  One sip of apple juice at a time; the eye dropper of water; the throwing up of forced medications, the refusal of food.  He's really had nothing to eat or drink since Saturday afternoon and is, therefore, IV dependent while here.  Today, however, he's finally reached the bottom of an apple juice box.  It took all day - but he did it! I hope this is the start of a better night and day tomorrow.  We can't go home until he begins drinking and taking his formula (Elecare).

After watching our oral battle, the pediatrician has raised some tough issues for us to consider and pursue.  We first will see a pulminologist at Tulane.  That leads to a series of "What If" scenarios that I'm not ready to share.  The pediatrician wants to talk to our primary pediatrician about making a call to our team in Cincinatti.  The doctor feels it should be a phone conversation, not just a faxing of records.  This again leads to some difficult choices and scenarios that we must face.

Am I ready for this next, difficult journey?  Can I handle what lies ahead?  Why does God trust us enough to push my family down this stoney path? 

 "It is the LORD who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.” Deuteronomy 31:8

Partners in Crime

It’s official.

I know I shouldn’t feel surprised or disappointed….but I am a bit. I’m only human and the momma after all. My educated brain knows that 60% of kids with severe reflux have it, or that’s what all the research I find on-line suggests. I mean, we’re already treating Stanton for it with a daily breathing treatment called Pulmicort. Looking back over the last three years, we’ve treated most of the classic symptoms and flare-ups, however, each doctor, ENT, Immunologist, Allergist, Gastroenterologist, etc. we’ve seen has tip-toed around calling Stanton’s chronic lung/breathing issues what they really are….until today. ASTHMA - today Stanton received a diagnosis of asthma. Asthma and Reflux are truly partners in crime.

Since July 30th we’ve been to the pediatrician three times. On July 30th we went after Stanton crashed. This is what I’ve jokingly describe as his “time of the month.” Every three to three and a half weeks, the bottom just falls out from under Stanton. The mystery dots appear, the refusal of oral intake begins the clear runny nose kicks in, the vomiting eventually explodes and his oxygen levels plummet. On August 10th we went for an ear infection and increased reflux. Today we went for the right on time three week crash.

surviving on Mommy and Daddy's bed

The pediatrician obviously knows our situation and history and understands that getting a prescribed antibiotic down him is impossible. So, poor Stanton received a big shot of rocephin. We have all the inhaled and dissolvable steroids at home…so that’s where we are now, continuing to alternate the breathing treatments between Pulmicort and Xopenex. I’m hoping that Stanton will begin drinking something again by tomorrow so I can hide the dissolvable steroids in his Elecare formula. That’s the only way to get them down without a huge throw-up episode. (He hasn’t had any Elecare since Saturday around lunch).

Once we are over this episode, the pediatrician wants us to increase his daily Pulmicort breathing treatment from once to twice a day and see if that makes a difference. He also suggested we start watching to see if Stanton’s episodes become more frequent now that he is in school. If they do, the pediatrician wants us to seriously consider taking Stanton out of school. He said it’s his either his social development or his health and right now we may not be able to have both. UGH!!!! I thought we had finally arrived at something normal!!!! And Stanton really LOVES his pre-school. We’ve had zero transition issues. So I’m keeping my fingers crossed that it won’t come to this.



A couple of days before Stanton crashed



Connect the Dots

As I dressed Stanton for school this morning, I noticed the dots. They’re back! All over his torso, sides and slowly spreading to his back. I looked at the calendar and guess what? It’s been three and a half weeks since the last dots occurrence. It really is every three weeks or so. He was super irritable and weepy this morning. However, he wanted to go to school. With no other symptoms, I took him.

Stanton was excited when he walked into the school. He ran right in his classroom and hung up his backpack! When I picked him up he looked tired, but was still all smiles. He even gave every child a hug before leaving. His teacher said he had a good day. When I got him in the car I looked and noticed out of the 10 ounces of formula I sent, he only drank 2. No wonder he seemed tired and lethargic…..I thought. So, he drank another 2 ounces in the car on the way to speech therapy. At therapy he began complaining that his ear and head hurt. Sure enough, his left ear is draining.

As soon as we got home he sat down at our kitchen island and started profusely vomiting…..everywhere. Once I calmed him down, got his wet clothes off, sponge bathed him and settled him down on the couch in just a diaper, he fell asleep. Thankfully his draining ear was facing up, so I dug around in his cabinet and found some left over antibiotic single dose ear drops and gave him dose. I haven’t decided if I’ll take him to the pediatrician or not. I guess I’ll see how the rest of the afternoon goes and if need be, take him in the morning.

It’s only his second day of school. Looks like he’ll miss day three. Bummer!

I wish someone, somewhere, would connect the “dots.” I feel strongly they represent something more going on inside his little body…hmmmm….

The Reality of a "Vacation"

In December, 2009, we planned and booked a vacation to Disney World in Orlando, Florida for June, 2011. Stanton turns three on June 12, 2011 and, back in 2009, we thought this would be the perfect time to go. For starters, children get in FREE until the age of three and this is Stanton’s official last week of being a two year old. We also must have really believed what the doctors kept telling us - that most kids outgrow the developmental delays, need for aggressive therapy, specialists, reflux disease and needed nebulizer treatments.

So – here we are in Orlando – with the special medical formula, Elecare; with the erythromycin for Delayed Gastric Emptying; with the nebulizer disguised as a dragon and two inhaled steroids that go in it; with the prevacid compound for gastroesophageal reflux disease; with the steroid cream for the unexplained recurrent hives; with our undiagnosed, sick little man. What we were thinking – right?

After arriving Sunday, we woke up Monday ready to hit Hollywood Studios. Afterall, Stanton loves all the Pixar films and this is the park where most of those characters hang out. Stanton awoke with other plans. His tummy hurt and all he wanted to do was lie around, watch tv and cry. Everything was a fight….changing his diaper and getting dressed was clearly an episode straight from those fake wrestling shows. Somehow, by 9:30, we were in the car and on our way with our unpleasable child in the backseat. Stanton cried as we put him in the stroller, cried as we entered the park and had our bags searched, cried as we checked his medications and formula into the first aid center, cried as we looked for the dang Toy Story Mania ride. The crying and awful behavior escalated as we stood in line for Toy Story. He hit himself, others around him, kept falling to the floor, screaming, etc. We created quite the in-line entertainment for the hundred or so families…although I’m sure it wasn’t what they wanted to witness. Disney is supposed to be the happiest place on earth – right?

After surviving Toy Story Mania, we headed back to first aid to calm Stanton down. I washed his face, got him to drink a bottle, changed his diaper and just sat. The nurse suggested we try the Honey I Shrunk the Kid playground so loaded up our screaming child and headed that way. I really didn’t know what to do but keep walking. Everyone we passed turned to watch Stanton’s spectacle - a parade of screaming, kicking and gagging. Once inside, Stanton actually pulled it together and played for a good 20 minutes in the playground. I sat on a rock and focused on holding back the dam filling my eyes and soul.

Across the way from the Honey I Shrunk the Kid playground was a stunt car race show which was to start in 5 minutes. Stanton LOVES cars and crashing and fire on TV so we thought we should try it. The wait in line was slightly better than Toy Story only in the fact that he kept his hitting to himself. We lasted one stunt, then had to get up and leave. We were all done for the day at 1:30.

As we entered the first aid building, the sweet nurse that had been helping us all day saw it on our faces. “Leaving all ready?” she asked. My eyes brimmed with tears as I nodded. She put us in a quiet room and we let Stanton pull himself together, drink some more formula and just be. The nurse then told me we needed a disability access pass for our other park days. She was surprised we had not already done so. So, we walked next door and completed that process before leaving the park.

On Tuesday we didn’t go anywhere or do anything. Stanton continued to cry and complain about his stomach. He had several blow outs Monday and Tuesday and woke up Wednesday with his trademark bright red whelps on his checks. He goes through this very cycle about every three weeks – which I suppose has fallen on our vacation week. However, once the whelps appear, Stanton is happy again. So, with a happier version of himself, we headed to the Magic Kingdom Wednesday night. Because of our disability pass, we were able to conquer an average of four rides per hour. Thank you Disney for being so amazing and accommodating to families like ours!

I think the pictures tell the rest of our Wednesday….

MRI

  Last Monday I took Stanton to see his developmental pediatrician, Dr. Anderson. She is so nice and always really connects with Stanton. She said that she just ran across some recent research about the digestive system. Here’s what I remember from her description of the research: The digestive system is the only system in our bodies that can work apart from the body. The only way the digestive system communicates with the rest of our body is through the vagus nerve. The vagus nerve begins in the brain and stimulates both the lungs and the stomach. The research suggested that patients who were being treated for gastric issues, should instead be treated for a neurological disorder. That quite possibly there is a misfiring from the brain to the digestive system via the vagus nerve. Hmmmmm…..interesting stuff isn’t it? Okay – I’m totally a nerd, but also the mom to a child who takes a variety of medications for the various issues in his digestive system. He takes something for his upper esophagus, something for his stomach and something for moving things on out. Wouldn’t it be great if all he needed was a medication for his brain? I don’t even know if a medication like this exists yet, but the idea of it all really has me intrigued.


So – Dr. Anderson is in the process of setting up a sedated MRI for Stanton. She said that she is really interested to see what it reveals and feels it could show something. She reminded me that he has more going on than just the feeding and digestive issues….low muscle tone, mild sensory issues, and some facial features that suggest a disorder. All of this could be revealed through the MRI.

I’ll keep you posted as things progress!

Ginger

Stanton LOVED flying and made friends with all the flight attendants! He was most intrigued with the “what to do in an emergency” pamphlet. The flight attendants really got a kick out of watching him study it for the entire flight. They gave us a copy to keep when we landed in Cincinnati.

Our first appointment was with the Allergist on Wednesday. We spent the first hour talking about Stanton and his symptoms. (He eats, then gets sick 3 – 4 hours later.) They were very thorough and supportive. A child life specialist came in and showed Stanton what the skin testing would look like and had him give a few pricks to a doll. She brought in lots of fun toys to keep him occupied. The testing went amazingly well. Stanton cooperated and didn’t cry until the last three pricks.

All of the testing returned negative for allergies! Keep in mind that a milk protein intolerance is not something that shows up in allergy testing….and this is something the team feels that Stanton has. But – the allergist said we can feel safe offering Stanton a variety of foods.

We had to be at the hospital early Thursday morning for Stanton’s delayed gastric emptying scan. He couldn’t eat or drink anything before the test so we just let him sleep late and took him to the hospital in his pjs. Stanton drank about 2 ounces of his formula mixed with a nuclear ion. Then he had to stay still on his back for an hour. Cincinnati Children’s is super child centered! To keep Stanton still on the table, they put a towel over his stomach and a sandbag on each side of him. He could have gotten up if he wanted, but the towel served as a reminder to stay still.

A child life specialist came right in with movies, light up toys, flashlights and glow in the dark toys. Each time Stanton became restless, she pulled something new out. He actually stayed on his back for the entire hour without complaining! The machine took pictures of his stomach every 30 seconds. Stanton passed the scan by emptying exactly 60% of his stomach’s contents....the minimum but just enough! The GI said that this proves the erythromycin is working.

After the scan we headed upstairs and met with the feeding team. Each member of the team comes in one at a time – then everyone meets together and comes up with a plan of action. The gastroenterologist comes in last with the recommendations and basically wraps up everyone’s opinions. We saw a speech therapist, an occupational therapist, a behavior therapist, a dietician, a geneticist, a nurse, and the gastroenterologist. The therapists seemed pleased with Stanton’s current therapy schedule and the things we are working on. They said he’s really made quite a lot of progress since we were there in November. The therapists watched him take bites, refuse foods and drink from a variety of containers (cup, sippy cup, straw, bottle). The only concern raised was the issue of Stanton protecting his airway when drinking/eating. Every time he finishes his bottle he starts really coughing and sounds congested for about 5 minutes. He also does this if he eats a good portion of solid food. They were disappointed that the swallow study we had done locally only showed his swallow (which is what I thought it was supposed to show). They explained that when they do swallow studies they also wait about 10 minutes after the child drinks/eats to watch the airway’s response.

The dietician was satisfied to see that Stanton’s weight has remained steady since November. I asked if we should decrease the amount of formula Stanton is drinking to encourage him to eat more solid foods and she said NO quite emphatically. She recommended that we continue giving 32 oz. of Elecare a day (his medical formula) as that’s full of vitamins and nutrition. He isn’t eating a variety of fruits or vegetables yet so the formula is what his body is thriving on. She encouraged us to keep our routine of offering small snacks at the table – but to add more variety to what we offer. For example, since one of Stanton’s accepted foods is peanut butter, try offering peanut butter on a banana or an apple slice.

The geneticist came in next. She said that all of the abnormalities that returned on Stanton’s last genetic testing are just indicators that he is on the formula Elecare. She looked at Stanton and played with him and commented that he does have hypotonia (low muscle tone) which is the culprit behind his eye issues, tongue issues, gross motor delays and stomach emptying issues. She said she didn’t feel there was a genetic issue and that we should stop pursuing anymore genetic testing. That was great to hear!

Finally Dr. Pentiuk, the gastroenterologist, came in. He said we were doing everything right and that this feeding monster is a slow and steady process. He felt like we are making some real progress. He recommended we increase Stanton’s erythromycin dose, which treats delayed gastric emptying, and see if solids stay down better over the next 3 months. If not, there is a surgery that we can come back for where he would expand the bottom of Stanton’s stomach and botex the stomach muscles. He also recommended that if we come back for the surgery, he’d like to redo the swallow study and also do a FEES, a fiber optic airway exam. Both of these tests would look at his airway while eating.

So, for now, we are back home and waiting. We will continue pushing in therapy, offering foods and just waiting for the day Stanton decides to eat and keep it down!

Patterns

Four days after completing our last round of steriods and antiobiotics.....we're back on! Thank goodness both come grape flavored and I can semi-hide them in his formula. I just hope we all get some sleep and Stanton's nasty chest cough is cleared up before Tuesday. We fly to Cincinnati on Tuesday for a few days of testing at the Children's Hospital. Stanton has only been sick about 4 times since we were last in Cincinnati (November):


1. Thanksgiving - ate 3/4 of a scrambled egg then became congested and went downhill quickly that day. This episode required breathing treatments and steroid shots.
2. January 6 – ate for the behavior psychologist. Vomiting began about 4 hours later
3. January 21 – ate at Piccadilly. Had about 2 spoonfuls of corn, half my portion of carrot soufflé and 4 bites of jello. Became very congested that night and vomiting began the following day. This turned into aspiration pneumonia.
4. February 8 – ate well at speech therapy. Vomiting began three hours later. Wheezing began the following day. Back on steroids.
Does anyone else see a pattern here? Each serious illness begins with EATING. Stanton has the desire to try and taste and eat…then he severely pays for this choice. I’m looking forward to sharing this information with the team in Cincinnati. Maybe a light bulb will turn on in one of their minds…

We will meet with an allergist who works on the aero-digestive disorders team and Stanton will undergo full allergy testing. We'll meet with a geneticist who also works on the team and she will review all the testing we've done thus far. I'm hoping she gives us some good insight about our most recent metabolic results. Stanton is then scheduled to undergo a nuclear medicine test for delayed gastric emptying. We'll wrap everything up by meeting with the gastroenterologist and feeding team again.

I'm looking forward to the trip, although it will be tough on Stanton. I just hope it brings us one step closer (okay, maybe like five steps closer) to an answer!

Happy Valentine's Day!



There are so many things to update!  I'm sorry it's been a couple of weeks since my last post. We've been swimming in paperwork trying to follow up with the genetic recommendations.  Stanton's latest genetic lab work showed abnormalities in his plasma, carnatine, enzyme, organic acids and fatty acid levels.  The report suggested we see someone who specializes in metabolic disorders.  The referral to the bio-metabolic genetic clinic at Tulane University was finally sent over yesterday.  After calling and calling and getting no where, John faxed all 41 pages of the genetic report to our pediatrician.  That seemed to get the office's attention!  Tulane is to call us for the appointment.....so we're just waiting.
 
Stanton finished his round of antibiotics this past Sunday after aspirated a couple of weeks ago.  And now is sick again!  However, this latest episode didn't end up in his lungs....thank goodness.  He just looks like he has really bad sinus/allergy gunk.  His eyes are bloodshot, puffy and watery; his nose is constantly running clear and he's sneezing and coughing his head off.  He's pretty miserable.  I took him to the doctor this morning just to be sure all was okay - and she said to just give him Zyrtec. 

We leave next week for Cincinnati Children's Hospital for a week full of tests.  I hope Stanton is in better health before we board the plane!  I'm also hopeful for some real treatment options.  We've been giving Stanton the medication for delayed gastric emptying and I just can't say I've seen a real difference.  Thank you all so much for your encouragement and prayers as we continue down this winding road!
~Ginger

Open Doors

"When one door closes, another opens; but we often look so long and so regretfully upon the closed door that we do not see the one which has opened for us." 

~ Alexander Graham Bell

For two and a half years now, we've tried to gather doctors, specialists and therapists around us.  A team of experts all focused on Stanton's well-being...a team dedicated to finding answers...people ready and willing to fight for his health. Doors have closed along the way.  Roadblocks leading to detours.  Telling our story to any doctor willing to listen.  Telling our story to doctors not interested.  Learning who to push and who not to waste time with.  Many miles traveled in a quest for answers and solutions.  As 2010 comes to a close I realize that although we still are without many answers, a door has opened for us. 

John and I have made the difficult decision to stop trying to develop a "local" team of specialists.  It's exhausting and simply not working.  I spend all of my "free time" letting laundry pile up as I call every allergist in a 120 mile radius only to learn that they are not familiar with GI related issues nor the elimination diet.  I spend hour upon hour making appointments, faxing records, following up with insurance, traveling to appointments, telling our story - only to hear that they don't know....or have considered.....

A team is already in place and waiting to work with us!  So, we are Cincinnati bound!  Stanton and I will travel back to the Cincinnati Children's hospital in Febraury.  We will meet with doctors and have some testing done. Although traveling is difficult - it is the best choice for Stanton for this time.  Plus - I feel excited about this choice; like a weight has been lifted off my shoulders! We are now an integral part of a true team!  It's taken me two years to stop looking at the closed door....the dream of a local team.  But now that my eyes are set on the open door - all I see is hope.

Juggling

What a busy week….and it’s only Wednesday! We gave Stanton his last breathing treatment Monday night. He still has a nasty sounding cough, but now has short spurts of playfulness and being silly. He is also up to drinking an average of 15 oz of formula a day (still not close to the 32 oz he should drink, but an improvement). Now, if we could just get him back to sleeping through the night – that would be great! I’ve been sleeping with him sitting up in the la-z-boy since Saturday. When he lays down flat, the coughing and vomiting really get exacerbated, so the chair has been the best way to keep him comfortable.


Today we had an ENT appointment in New Orleans. Our appointment wasn’t until 1:30 so we spent the morning at the Louisiana Children’s Museum with my dear friend and her children. It was great to just be out, playing, visiting, and feeling normal for the first time in a while. Thanks Nikki for meeting me and spending your day with us.

The ENT said Stanton’s throat and ears look good. He seemed as frustrated as I am that another year is about to close and we still have no real diagnosis for this chronically sick little one who still can’t seem to eat. I do feel we have a better plan of action – but in reality – we are still just ruling things out and searching. The ENT ordered a sweat chloride test so we have to go back tomorrow to have this done. They only do the test at 1:00 so we just missed it for today. This test rules out cystic fibrosis. I really don’t think this is what we’re dealing with, but the ENT was surprised to realize that CF had not been ruled out already. Stanton has had tons of upper respiratory infections, croup, and pneumonias, so the ENT felt we should take a look. Wish us luck with that tomorrow!

I also received a message from Dr. Martinez’s nurse. Dr. Martinez is our genetic doctor. We had some genetic lab work done back in early September. The last call I received said everything looked normal, but they were still waiting on one test to come back. So….9 weeks later the results are in. The nurse’s message said the organic amino acid results show an elevated level of enzymes and acid so the doctor would like for us to have more lab work done to look closer at this particular issue and other possible metabolic disorders. That’s all I know. Once I receive the order in the mail, I guess we’ll have to go in for more lab work.

My pediatrician made a referral to a local allergist, but I still haven’t heard about when the allergy testing will take place. My hope was that we could get started on this before Christmas….but we are just sitting tight and waiting.


Juggling many balls in the air,

Ginger

More Medication Please!

This week we started Stanton on erythromycin three times a day. It came in a liquid suspension and it’s grape flavored. So far, I’ve been able to hide it in his “milk” and he hasn’t seemed to notice. I already hide his Prevacid/BufferBabies combination in his milk and it too has a sweet, strawberry flavor. I guess the grape and strawberry flavors complement one another! Erythromycin is an antibiotic that can speed up stomach emptying. The team we met with in Cincinnati feels that Stanton has Delayed Gastric Emptying. While we wait to schedule the official test for this disorder, the team wanted us to go ahead and add erythromycin. The doctor assured us that there aren’t any major side effects and that if we don’t see a change in a month, we can evaluate other treatment options.



Delayed Gastric Emptying is also called gastroparesis. It’s a condition that affects the ability of the stomach to empty its contents even though there is no blockage. I’ve just begun to research this new diagnosis for Stanton and have stumbled upon some really fascinating information. The cause of gastroparesis is sometimes linked to the vagus nerve. This nerve is the only connection between the brain and the digestive system! The vagus nerve has the job of coordinating the movement of food through the digestive system. With gastroparesis, the food is retained in the stomach. Gastroparesis is considered a neuromuscular disorder and is the root of nearly half of all gastroesophageal reflux disease (GERD) diagnoses!!!!! I find this point really interesting as Stanton has now been diagnosed with both gastroparesis and gastroesophageal reflux disease…..hmmmmm……

For those of you interested in reading more about families dealing with gastroparesis, click here for some more perspective.


The more I read and learn about how complicated our digestive systems are, and how closely the digestive system partners with the neurological system, the more I feel we should move the MRI up on our list of tests to complete. Stanton’s developmental pediatrician recommended it over a year ago, but for financial reasons, we didn’t proceed. At our last developmental pediatrician visit, the doctor mentioned it again. I asked if we could wait and have the MRI done in conjunction with another sedated procedure. Stanton hasn’t needed a sedated procedure since April, which I realize as I type this fact, is major progress! So, I’m just thinking I should call and get it scheduled. 

Cincy Details

Listen to my words, Lord,

consider my lament.

Hear my cry for help,

my King and my God,

for to you I pray.

In the morning, Lord, you hear my voice;

in the morning I lay my requests before you

and wait expectantly.

~Psalms 5:1-3

I have been fervently asking God to open doors for us in Cincinnati. The closer our trip is, the more nervous I feel. We are traveling such a long way to see this doctor. I just don’t want our trip or our efforts to feel in vain. Well, yesterday my prayers were acknowledged! Nurse Julie called from Cincinnati Children’s Hospital and asked if we could change our appointment from 1:00 to 8:45. She said that Dr. Pentiuk had reviewed Stanton’s medical records and thought he would benefit from also seeing the feeding team. This means that Stanton will now be observed and assessed by an entire team of experts who deal with feeding disorders: an Occupational Therapist, a Speech Therapist, a Psychologist, a Dietician, a Physician, an ENT, a Genetics doctor and the Gastroenterologist, Dr. Pentiuk. Nurse Julie said we should plan on spending 3 – 4 hours at the hospital.

Now, I can look forward to our trip! I’m really even excited about it! Today, the nurse practitioner from the feeding team called and spent 45 minutes on the phone with me asking detailed questions and going over everything for our visit. She let me know that the assessment room has a DVD player and that we will have some down time between meeting with team members. We are to bring some things that Stanton will eat or try to eat as well as his Elecare and any bottle and sippy cup he will drink from. She let me know that after each team member has had an opportunity to interact with Stanton and talk to us, they will all meet and come up with recommendations on what to do next. These could include tests, therapy interventions, etc. The nurse practitioner let me know that each person we meet with will be billed separately to insurance and we will need to be prepared to pay multiple co-pays. I just grinned and thanked God over and over for providing for us…..our insurance has pre-approved Cincinnati Children’s Hospital as an “in network” provider!!!!!!

Guess where John’s college roommate lives? In a suburb of Cincinnati! He actually works only a mile or so from the Children’s Hospital! So, we will get to hang out with him and his sweet family over the weekend. I just feel completely overwhelmed and humbled that God has perfectly arranged each and every detail of this process so that things just fall into place for us to go, focus on seeking the best care for Stanton and have a little fun too!

 

That's Amore....

Things are certainly becoming more and more inticing to Stanton.  He is happy, silly and adventurous these days.  I can tell he feels better and is so much fun to play with lately. 

Stanton is becoming really curious around food - noticing that others are eating - asking to taste. At therapy we spend a lot of time playing with pretend food. He really enjoys pretend cupcakes and hamburgers! A step stool now lives in our kitchen at home and Stanton seems to enjoy helping me cook, stir, wash dishes, load the dishwasher and pull out the spices.

We played with some friends at Monkey Joe's yesterday.  When Stanton's little friend said she was ready for lunch, he actually stopped what he was doing and said "lunch."  So, we proceeded to the concessions and I let him pick anything.  I know - throw caution to the wind, right?  Well, I'm noticing that Stanton will sometimes take a bite of something, chew it up, then spit it out, rather than swallow.  It seems to me that he is really good at reading his body.  So - he picked a slice of cheese pizza.  I pulled the cheese off and let him chew on the crust with sauce.  He actually ate 6 or 7 real bites.  I think our friends were trying to make conversation, but I really couldn't concentrate as I was so intently watching my little man enjoy a slice of pizza for the first time.

He hasn't thrown-up...but the chronic diarrhea has certainly kicked in.  Every diaper has been a blow-out. Dairy sure does a number on his little system.  Again today we were at a function with pizza available.  I said, "Look Stanton, they have pizza just like at Monkey Joes".  Stanton looked at me with a serious face and said "No pizza today Mommy."  I guess he knows his stomach can't handle it two days in a row.

It's amazing to me that Stanton is growing and thriving on Elecare alone.  My sweet, precious boy.

What is an Eosinophilic Disorder?

What in the world is an eosinophilic gastro-intestinal disorder ? (this does take practice….but here’s how to pronounce it: “e-o-sin-o-feel-lic”)


I thought I’d take a moment to define the diagnosis Stanton has been given and is being treated for. Most of this information came from a wonderful site for Eosinophilic disorders. Thank you http://www.apfed.org/ for being in existence for parents like me! Of course, you’ll see that I’ve added in some information particular to our story….

Eosinophilic esophagitis (EE) is an allergic inflammatory disease characterized by elevated eosinophils in the esophagus. This is where it’s tricky for Stanton. He had an endoscopy in April to specifically look for eosinophils and none were found. Stanton began treatment for EE three weeks prior to the endoscopy so some of our specialists feel that this proves the treatment is working, while others on our team think it shows he may not have EE. So, for now, we are treating Stanton as if he has EE while still undergoing tests to rule out other things that could be going on. Stanton matches each and every symptom of EE and has responded well to the treatment!

Eosinophilic esophagitis is characterized by a large number of eosinophils and inflammation in the esophagus (the tube connecting the mouth to the stomach). Stanton had severe inflammation and damage before starting treatment for EE. Before, we treated him with a whole variety of reflux medications. He never showed progress while on acid blocking medications. There may be an inherited (genetic) tendency. (We have an appointment with a geneticist in July.) EE can be driven by food allergy or intolerance: most patients who eliminate food proteins from their diet (by drinking only an amino-acid based formula) improve. (Stanton switched to an amino-acid based formula, Elecare at the end of March.)

Common symptoms include (Stanton matches ALL of these):
o Reflux that does not respond to usual therapy (medicines which stop acid production in the stomach)
o Dysphagia (difficulty swallowing)
o Food impactions (food gets stuck in the esophagus)
o Nausea and Vomiting
o Failure to thrive (poor growth, malnutrition, or weight loss) and poor appetite
o Abdominal or chest pain
o Feeding refusal/intolerance or poor appetite
o Difficulty sleeping

At present, the only way to definitively diagnose EE is through endoscopy with biopsies. The endoscopy is often performed after treatment with reflux medications (acid suppressors) have failed to relieve the symptoms. During an upper endoscopy, the gastroenterologist looks at the esophagus, stomach, and duodenum (first part of the small bowel) through an endoscope (small tube inserted through the mouth) and takes multiple biopsies (small tissue samples) which a pathologist reviews under the microscope.

The gastroenterologist may be able to see a problem through the endoscope, but eosinophilic esophagitis may be present even if the esophagus looks normal to the doctor. That is why the biopsy samples are important to making the diagnosis of EE. A high number of eosinophils throughout the length of the (> 15 per high power field) suggest the diagnosis of EE. GERD also causes eosinophils in the esophagus, but typically far fewer and only in the part of the esophagus closest to the stomach. The pathologist will also look for tissue injury, inflammation, and thickening of the esophageal layers. With EE, the increased eosinophils are limited to the esophagus and not found in other areas of the intestinal tract. Once the diagnosis of EE is confirmed, food allergy testing is typically recommended to guide treatment. THIS IS EXACTLY WHERE WE ARE IN THIS PROCESS. Stanton is currently undergoing all the food allergy testing through a specialist at Ochsner’s.

Watch this video to see other families and children living with this diagnosis.  It sooooo describes our life and the stories sound so much like Stanton.

Our ENT Rocks

We just returned from our post-scope follow up visit with our new ENT at Ochsner’s in New Orleans. In April, Stanton had a bronchoscopy in combination with our last esophageal and upper GI scope. Why did we end up needing a bronchoscopy? In January, Stanton had tons of constant congestion and 2 episodes of pneumonia. So, in February, after battling our ex-ENT to please just look at Stanton’ s throat, our pediatrician ordered a soft tissue x-ray of his face and neck. We were thinking his adenoids might be inflamed and/or large and may need to come out, however, the x-ray showed no issues with his adenoids or tonsils. Instead, we were alarmed to find that Stanton displayed a severe narrowing of his airway. Once our pediatrician saw how small Stanton’s airway was, we were sent directly to an ENT/airway specialist at Ochsner’s and the ENT, in turn, scheduled this bronchoscopy. This procedure allows the ENT to look at the airway system. Through the bronchoscope, they evaluated Stanton’s respiratory system, including his voice box, wind pipe, and airways for any abnormality or infection.

We learned they day of the scopes that his airway had returned to normal size and no abnormalities or infections were found. This was great news! But – I had to wonder, what does this mean?

The visit was a really good one! The ENT completely congratulated us for being aggressive and starting the elemental diet before the scope (switching Stanton to the special new formula, Elecare). He credits this with Stanton’s airway healing. No food = no reaction.

I brought my gag/vomit/poop/food journal along to the visit so I could show the doctor our one attempt at introducing food/episode since the clear scope. We introduced eggs and that was a complete nightmare! Stanton, of course, loved the scrambled egg and ate almost half of the egg! John and I were amazed, as we watched a child who shows no interest in food or eating, actually seem to enjoy the egg. Well, two hours after eating the delicious eggs, the screaming, retching, gagging began and was quickly followed by uncontrollable vomiting. Poor Stanton vomited profusely for 3 full days and nights. He aspirated while vomiting and we ended up with fluid in the lungs, swollen throat, etc., etc. Not a fun way to spend the week – steroids, breathing treatments, etc. He ended up with this rash on his face, which our pediatrician said was from vomiting so much.

The ENT said the egg episode clearly verifies Stanton’s diagnosis of Eosinophilic Esophagitis (EE) and we should wait 6 weeks before introducing another food. Ugh. The waiting is the worst! Then again, the trauma that spews after trying food is pretty awful too.

The ENT said he’s amazed that Stanton is maintaining his weight and looks so healthy! We hear that with every new doctor we meet. They see his extensive records and notes and surgeries and expect to see a pale, lethargic child. I suppose having severe EE, feeding aversions and swallowing issues are all serious issues that could indeed produce a unhealthy looking little one. We work so hard at keeping Stanton healthy. This is no easy task….but we’ve made it our mission.