The Long Road to Eating

Six weeks ago, I shared our, work in progress, journey with Owen getting to a comfortable place with food.  There has been another visit to GI and some new developments that I’m still trying to process, so here’s the short update and I’d love to meet other families who have been down similar path with food restrictions.

Where I Left Off:  As a reminder, after our first visit with GI, we decided to try Owen on an elemental formula that is hypoallergenic.  We stopped all other feedings in order to give a good test to see if the new formula helped clear up Owen’s extreme eczema, discomfort with stooling and retching after feedings improved.

Another Diagnosis?:  What I didn’t tell you last time is that Owen’s doctor had a diagnosis beyond “just” food allergies on the back of his mind when he first saw Owen.  He wonders if Owen may have Eosinophilic Esophagitus (EE or EoE, depending on who you talk to).  This is a disease that causes inflammation and scarring of the esophagus when exposed to allergens – typically food, but they can also be environmental.  If the allergens are avoided, the esophagus can eventually recover.  People with EE are typically male, have severe eczema, often have asthma and known food allergies. (check, check, check & check, if you’re keeping score).  EE allergens will not always show up in blood testing, they are two different allergic reactions.  Some people with EE have only one trigger allergen…others have nearly nothing that is safe for them to eat.  It’s a really broad spectrum.  The only way to get a definitive diagnosis is take biopsies of several areas of the esophagus via an endoscopic procedure.

How is he doing on Elecare Jr?:  Knowing that this disease was a possibility, I didn’t freak out when Owen wasn’t magically better.  I was only encouraged to see improvement.  His skin still is bad behind his knees, on his hands and on his lower back.  However, we reached a point where I didn’t have to give him Benedryl so he wouldn’t wake up crying and bloody from itching in his sleep.  I was able to get him back to near baseline feeding rates without inducing retching and he no longer had constipation.  However, he is still sometimes uncomfortable with stooling that is now very watery and he has started retching with stooling.

The Next Steps:  

  • After negotiation (I didn’t like the first idea to try him back on Pediasure for a month), we decided to give Owen three more months on Elecare Jr, the hypoallergenic formula.
  • Now that Owen is over two, GI expanded his blood allergy testing to the 15 most common foods.  He was tested for the 5 most common foods last spring.  We knew that Owen had allergies to Wheat, Egg and Peanut.  We now must add Barley, Peas and Soy Protein to his list of foods to avoid.
  • Because Owen is asking for foods, I pushed really hard to allow him to try foods again.  GI agreed we could start giving him foods, however, he must pass a two week test with each new food introduced.  Because there is a potential that Owen has EE, it’s not just breathing issues that we have to worry about.  EE would present itself with eczema and swallowing difficulties.  So, we start with one, one-ingredient, food and watch for skin or swallowing changes.  If he passes over a two week period, than we can add one more ingredient and we continue, until we’ve identified which foods are safe for Owen.
  • We will reassess in three months to see if we should move forward with the endoscopic procedure, but we don’t want to put Owen through it, if this cautious approach solves the problem.
  • We will reinstate Owen’s feeding sessions with OT and will focus on drinking and exploring any foods that we find that are safe.

How is the food trialing going?:  We are so far zero for one.  Owen failed bananas.  On his first trial, he started scratching his hands bloody within 5 minutes of being exposed to the food – he hadn’t even really tasted it.  We tried again the next day when he did taste it a little more.  Again, his hands started getting scratched and he became red around his mouth.  I did look up least allergic foods and bananas is on the list, however, I’ve seen a couple of sources that stated that bananas that have been treated with a ripening agent can cause issues.  We will probably go back to bananas in the future but using only organic to see if that makes a difference. Actually, all of our food trials going forward will be organic and home-made.  I want to give Owen his best shot.

Mom Worries:  I will admit, the banana fail along with the new list of blood tested allergies has me feeling really discouraged.  I know that kids with asthma or BPD often get false positives from blood testing for allergies, however, I have seen Owen show skin reactions to several foods now.  While I won’t say that he has EE without a diagnosis, I do believe that Owen’s reactions to food are real.    I don’t want to come off as dramatic or overly worrisome, but a restricted diet greatly decreases Owen’s chances of coming off the g-tube.  There are worse things than g-tubes, but I still hope he one day doesn’t need it.

Help me, please!  So, here’s where I need the help.  Who else has dealt with EE or a slow food trials like we are facing with Owen?  How did you approach food trials?  With which foods, when did you re-test?  Did you use organic, homemade, or it didn’t matter?  What am I not even thinking of asking?  Were there any alternative medicine therapies that worked?  Do you go to both GI and an allergist?  We broke up with our last allergist and I’m trying to figure out what more an allergist can add to the discussion.

I’m all ears, and really appreciate suggestions.

Why we went to Gastroenterology and What’s the Plan

After my post on Thursday, I think it’s pretty safe to guess that you all know that we went to Gastroenterology (GI) last week.  I typically process things more before I just throw them out into the internet to be always available.  However, I’m okay with everything what I wrote Thursday and I slept quite soundly after getting it off my chest.

Today, I do want to share a bit more about why we went and what our plan is, because it seems that many of us have similar “sensitive tummy” issues with our former preemies.  I put “sensitive tummy” in quotes, because that’s often the nice way to say it, but for the families dealing with it, it’s much more than a sour tummy every once in a while.  GI issues are a huge struggle for many preemie families.

GI Issues in Preemies:  Some of the non-preemie readers might be asking why that is, and the non-doctor answer is digestion develops late in gestation.  Kellen’s 10 days in the hospital were mostly due to digestion.  He knew how to eat (suck, swallow, breath), but his stomach and intestines didn’t know what to do with it yet.  The food just pooled in his stomach and turned foul (it was removed via his nasal feeding tube).

Another problem that is prevalent in preemies is reflux.  If you walk into a feeder grower unit in a NICU, you will see almost all of the babies swaddled into their bed at an incline because keeping the head up can help reduce reflux.  It seems that nearly all of the preemies that I’ve gotten to know have had reflux treated with Prevacid, Reglan or some other alternative.  Reflux is painful for the babies and often makes them fussy.  Also it often inhibits their desire to eat.  In some cases, like Owen, reflux can be silent (doesn’t come all the way up) and they aspirate on it, causing dangerous damage to the lungs.

The digestion process not being mature enough is also one of the leading causes of death and long-term disabilities in premature infants.  In many of these cases, the bowels become inflamed to the point that the tissue dies (Necrotizing Entercolitis – NEC) .  When that happens, the intestines can perforate leading to intestinal fluids filling the body with infection requiring immediate and high risk surgery.  Those that survive the surgery and the days following it, are at greater risk for Short Bowel Syndrome (not enough bowel to properly digest food) or, like Owen, neuro (brain) development issues.

Owen’s GI History:  Owen has had very significant GI issues.  As I understand it, he didn’t actually have NEC,  There wasn’t dead tissue, but there were several perforations in the top part (jejunum) of his small intestine.  When they went in for surgery, they also discovered that Owen’s small intestine was not connected to his large intestine (Ileal Atresia).  It’s unknown if this was a deformity Owen had from birth, or it was caused by the virus that attacked his intestines.  Most of the perforations were sewn up, however, a few were bigger and so the surgeon had to cut out a few small sections of bowel.  Seven weeks later, Owen went back into surgery to have his bowels reattached.

After Owen started making bowel movements, he begin getting breast milk feedings.  It started at something like 1 mL an hour and slowly moved up.  At first, Owen exceeded everyone’s expectations and he was able to increase his volume daily.  However, he reached a point, where he could not take an increase for several days.  Interestingly, this change occurred at the same time that my breast milk ran out and he was switched to formula.  At the same time, Owen developed severe reflux, a raw bottom and a reputation of being high maintenance.

Eventually, Owen stopped breathing and dropped his heart rate two days in a row with feedings.  I was there for both.  I demanded that they stop feeding him until a solution was determined.  He was switched back to donor breast milk and his feeding tube was moved down past his stomach into his jejunum to help make reflux less severe.  We slowly ramped up on his breast milk volume (with me deciding when and by how much) and waited until his lungs had recovered enough to do a Nissen surgery to more permanently prevent reflux and to give Owen his g-tube.  The surgery did wonders for Owen, he came home from the NICU 3 weeks later, at six months old.

Compared to the issues in the NICU, his GI issues were relatively under control for the next year.  Whenever we were admitted to the hospital the nutritionist would want to increase his feedings and then we had issues with dumping (yes, that is a medical term) where Owen would barely process his food and send it out the other end in liquid form (sorry if you’re eating lunch).  I got good at managing how much he could tolerate at a time and the doctors allowed me to control how much we changed, as long as I was willing to keep inching towards the nutritionists targets.  When dumping wasn’t an issue, Owen struggled with constipation in that he cried every time he pooped, however, he pooped daily and was very sensitive to miralax or pear juice being causing diarrhea, so we just kind of lived with it.  He was growing well and happy except for his 1-2 poops each day.  At the same time it was a careful balancing act and everyone knew that I was the supreme ruler on all things feeding.

This last fall, Owen became mobile and started eating orally at the same time.  As he at orally, I backed off on his tube feedings a little.  Not surprisingly, he lost weight.  However, being a former micro preemie, weight loss is taken very seriously, so his calories were slowly increased with the addition of Pediasure to his diet.  The NP in the NICU F/U clinic and I managed his diet increases together, but it seemed no matter how slow we went, we struggled to keep him from retching.  With her monitoring, I tried slowing down how quickly he got his foods, when he got his foods, what mixture of Pediasure and regular formula he got; we tweaked and tweaked, but couldn’t get him comfortable.  By retching, I don’t mean a little coughing.  I mean violent, eyes bugging out, body convulsions that would last several minutes at a time.  I felt like I was forcing food into him and several days made the decision to back off on how much he got because I didn’t want him retching.  As a result, we were constantly playing the “weight game”.  I knew why he wasn’t gaining weight; I wasn’t giving him all his calories because it was making him miserable.  Also, during all of this time, Owen stopped eating orally.  He went from 300-400 calories a day to nothing and it all started when we introduced the Pediasure.  I reached the point that my knowing Owen best was no longer working.  I asked for a GI referral.

GI Consult:  By the time we got into GI, I had it to the point that Owen was “only” retching once a day.  The GI doctor had never seen quite the combination or technique in giving him his food that I used, but it’s the best that we had.  And it was “working” in that his growth was looking pretty good.  Last week Owen was 22.5 lbs and a little over 32 inches.  That means he’s gained about two pounds since December.

I was relieved to hear that the doctor wants to come up with a solution that isn’t “Mom slowly tweaking”.  It shouldn’t be this difficult.

The doctor suspects that Owen has an allergy to the formula.  Even though Owen has had a blood test that didn’t indicate a milk protein allergy, he said it could still be milk that’s causing the problems.  Or, it could be some other ingredient in formula.  The problems are worse with Pediasure, but he still had severe eczema and constipation with the other formulas.  In terms of ingredients, Pediasure and Neosure, that Owen had been on previously, aren’t that different except that Pediasure is shelf stable and 30 calories per ounce and Neosure is a powder and we mixed it at 24 calories per ounce.  He suspects there may be a preservative that is causing further irritation for Owen with the Pediasure.  While it could also be the greater calories, the doctor is less inclined to believe that’s the problem because Owen had much denser calories with purees and that didn’t cause him issues.

Our Plan:  We will give Owen one month on Elecare Jr, a formula that is hypoallergenic.  He will not eat any other foods during this time.  If he improves; eczema, stooling and retching, then we will slowly add in foods.  We go back in one month to plan the next steps.  If things clear up nicely, we will hopefully avoid an endoscopy.  If there are still questions, we will probably schedule that procedure in the coming weeks.

Four days of the new formula in, Owen still has some retching but it’s less severe when he does it.  Now it’s more the cough and less the convulsions and bugged eyes.  He also has diarrhea 1-2 times a day instead of constipation.  I’m giving that another week before I call the doctor, because most kids do have stool changes with food changes.  Eczema hasn’t changed dramatically for the better or worse.

Formula Cost:  Our insurance does not cover formula, however, because Elecare Jr is very expensive, they are reviewing his case and may cover it.  If we ordered his formula through our medical equipment supplier, it would cost $1800 a month!  There are no stores in the metro that carry Elecare Jr (infant is available at select Walgreens), so I am ordering it through for a little more than $20 per can.  He goes through 18 cans a month!  Pediasure suddenly feels inexpensive!  For perspective, here’s a picture of the size of Elecare Jr can of formula next to a can of coke.

the size of a can of elecare Jr

Fingers crossed insurance will cover it!  More importantly, fingers crossed Owen is feeling more comfortable soon.

I know that’s a really dense post, so thanks to those that made it through.  However, I wanted to share, because I know we aren’t alone in these issues.  I’ll take advice from those ahead of us on this stuff too!


Feeding Disorder versus Picky Eater

A lot of people, myself included, have a really hard time understanding Owen’s feeding issues. Just before sitting down to write this post, I was catching up on Pinterest and salivating at all the delicious pictures a friend was posting. It’s hard for me to fathom that seeing food does not trigger a hunger response in Owen. Not only does the image of food not do it for him, neither do hours and hours of an empty stomach. If hunger registers in Owen’s brain, I’ve not seen him express it through a behavior change.

There are often two responses that people have regarding Owen’s eating.

  1. When he’s hungry enough, he’ll eat OR
  2. He’s just picky (or stubborn)

In fact, those two statements describe picky eaters. Picky eaters will eat take in adequate nutrition and continue to thrive while being selective with their food choices. In general, picky eaters will not tire of their favorite food choices and can learn to broaden their selections.

What Owen has is a feeding disorder. Feeding disorders, not to be confused with an eating disorder (anorexia or bulimia), is a term used to describe children who have difficulty consuming adequate nutrition by mouth. Feeding disorders can be very severe leading to failure to thrive, chronic illness and, in the most severe cases, death. Even when hungry, Children with feeding disorders may not consume enough to thrive.

According to this, often sited, 2000 paper for Journal of Clinical Gastroenterology, by Manikam, Ramasamy Ph.D.; Perman, Jay A. M.D., feeding disorders are, in fact, very prevalent As many as 25% of children have some degree of a feeding disorder. When you just count those who are developmentally delayed the number jumps to 80%!

Feeding disorders are multifaceted and often include medical, behavioral, psychological and environmental aspects. They can be found in healthy children, but the healthy cases are more likely to be temporary and environmental in nature. More frequently, and often more severely, feeding disorders are found in children with digestive disorders or those with special needs.

I really like the way this Journal of Pediatric Psychology article from 2007 breaks eating disorders into three, easy to understand categories; tube dependent, liquid dependent and food selective. Clearly as a parent who makes a conscious effort to not be stressed about Owen’s eating (or lack of), I was interested to see that, according to this study, intensive (extended in-patient, multidisciplinary treatment) has the best outcomes and the least stress for parents.

Honestly, Owen’s feeding disorder, is one of my biggest forms of stress in his care. While, I wouldn’t wish any type of disorder on him, physical and cognitive disabilities are easier for the rest of the world to accept. Eating and enjoying food is often the backbone of culture. I want for my son to be able to participate in his environment with food, and I do believe he can and will. However, getting there is really frustrating – especially when you add in his wheat, egg and peanut allergies. I basically am throwing darts blind folded looking for foods he will eat and then when we find one, he eats only that for a while and then gets sick of it, or starts teething or has some other disruption and then we start all over. It is costly and is very, very time-consuming and in reality, all the work may just be a band-aid to get us to the point when he’s ready for an inpatient program.

So, please, when you look at Owen, don’t think he’s being picky or stubborn. While not a perfect comparison, nobody would ever say Owen is still on oxygen because he’s too stubborn to breathe without support. We all understand that his multiple lung and airway disorders are working together making it difficult for him to fully wean from oxygen. His eating is similar, this is a medical disorder that involves many facets of his development. Just like he will one day be off oxygen, I know he’ll one day be done with his feeding tube. But it does take time. Sometimes seemingly excruciating amounts of time.

In the meantime, we keep working on it. Here he is checking out a strawberry, with a little apprehension.

Click to Pin on Pinterest

Click to Pin on Pinterest

More than just scars?

I mentioned yesterday that there is discussion about another possible diagnosis for Owen tied to his respiatory health.  In one way, that’s a little daunting.  He already is dealing with Severe Bronchopulmonary dysplasia, Tracheomalacia and presumed Asthma (they don’t tend to give an official asthma diagnosis without testing that requires the child to be older).  At the same time, I’m a little fascinated by the discussions because it shows what a complex, interrelated system the entire human body is.    Also, it potentially gives some answer as to why Owen is STILL on oxygen.

The theory has a lot to do with this picture (it’s not easy to look at so, I’ll give you the opportunity to scroll a little)







and this

Between major operations, drainage tubes and an Ileostomy, I can count at least 8 scars on Owen’s abdomen.  The biggest scar that goes horizontally through his midsection has been opened three times.  It was also intersected with the vertical scar going down the center of his abdomen.   This thick scar tissue makes the muscles around it very difficult for Owen to move, and we suspect, tight and uncomfortable for him to try to use.

It was in physical therapy (PT) where the extent of his scarring impacting his mobility became most clear.  It’s not very often that children can pull to standing first, crawl second and still not sit very well.  Owen’s PT at Gillette also pointed out that as soon as he gets into sitting, his respiratory rate (number of breaths per minute) increases significantly.  She then started talking about how we need to help Owen breathe better to help him with his mobility.

As soon as she said the word breathe, I said let’s start including his Pulmonolgist in these discussions.  Last week when I called Pulmonary to discuss Owen’s weight loss, I also explained that she was going to start receiving reports from PT and why.  I could hear a little excitement in her voice – she feels PT is onto something.  She then gave it a name; Restrictive Lung Disease.

I’ve only had one phone conversation on Restrictive Lung Disease, so please click the link to learn more, but it’s a pretty easy concept.  The diagnosis refers to, for any reason, the lungs not being able to expand to their full capacity.  As a result, these people tend to breathe shorter and shallower in efforts to keep up with oxygenating the blood. It’s always been known that his scars impacted his muscles and the efficiency of his breathing, but the new concept is that it’s also restricting his ability to take a full breath.

This all makes me wonder – could it be that Owen’s lung tissue is healthy enough for him to no longer need oxygen, and his restricted ability to utilize his lungs is actually why he’s still requiring cannulas?  Nobody knows for sure, but it’s a theory that’s being considered

So, what does this all mean for Owen?

  • The first step is Owen will start seeing a speech therapist to solely focus on breathing.  Breathing is the foundation of talking, so they can help with techniques that might make breathing easier for Owen.  There will also likely be some joint sessions with Speech and PT, since the skills are so connected.
  • I’m also getting trained on some massage techniques that may help loosen Owen’s scars to improve his mobility of the muscles in that area.  This process is like watching grass grow in the desert, but it’s an easy thing to do.
  • When we see Owen’s Pulmonologist next month, we will discuss further if/when Owen will have an official diagnosis and how it might change expectations and treatments.  In the meantime,  Pulmonary is going to bring Owen’s surgeon into the discussion to find out if it would ever make sense to go back in and clean up the scar tissue to give Owen more mobility (I tried not to freak out when I wrote that – didn’t really work).

I’m really excited that we have a team that is being so proactive about Owen’s total health.  It’d be easy for PT to just work around the scars – he is meeting his milestones, but instead, she’s been bringing in experts on scars, speech and will be working with Pulmonary, and potentially surgery.  There have been a couple of occasions that Katie, Owen’s PT at Gillette Children’s Specialty Healthcare, has called me in the evening to brainstorm around his scars.  I don’t know what the end result will be, but I think we are going to get some answers that will help Owen reach his highest potential.

On a week about giving thanks…Owen’s total team is about 100 people to put on the list.