Eliza Grace was born on March 15, 2006, at 26 weeks, 4 days, weighing 1 pound 4 ounces and measuring just 11.5 inches long. She is the light of my soul and this is the story of our life in the big city.

Sunday, January 18, 2015

So Your Child Has Truly Lost Her Appetite, What To Do?

When I started this journey as a parent of an extremely premature child I will admit I was in a bit of a fog in those early days.  Trying to figure out what the alphabet soup of acronyms Neonatologists threw out in conversation as if I had studied neonatology left me drained. Thankfully the nurses and Google deciphered them for me.  The daily ritual of walking to the hospital worrying about what I might find became numbing.  From my apartment bedroom I could see the NICU lights and would wonder if Eliza was okay and then pull on an old green fleece and walk across the street in the middle of the night to make sure she was okay, or okay as she could be under the circumstances.

The years passed and some struggles continue to this day, some struggles were overcome and new ones arose.  There were the expected pulmonary issues, gastrointestinal issues, growth issues, nutrition issues, delays in speech, gross and fine motor function and some unexpected cardiac issues and neurological issues.  But one thing was constant, the ever present, never ending, feeding issues.

I was lucky to meet a group of women shortly after Eliza came home who were all traveling on the SS Extreme Prematurity and who all had children around the same age as Eliza, who simply could not, would not eat.  All the babies lacked the skills that virtually all full term healthy children come by naturally (or which other micro preemies developed over time) and all had underlying medical issues that made eating a painful and difficult process. Combined, I think we tried every feeding therapy known to humankind.  Some small steps were gained, often followed by giant backward steps.  Some children learned to eat to a degree where at best they are "picky" eaters, others still rely on G-tubes and still others, like Eliza, have simply not mastered the art of eating, take little to no joy in eating, eat a very limited number of foods and seemingly have no sense of hunger.  It was a relief to know that I just didn't suck as a parent in the most basic, natural thing we can do for our children which is to feed them.

When Eliza left the NICU she was discharged with a list of specialists.  As long as that list was, I was prepared for her to see these specialists since they were for issues that she was already being treated for in the NICU.  But along the way in Eliza's early months home she showed no sign of hunger, had to be woken up or fed in her sleep.  She never cried for a bottle.  Eliza was referred to Early Intervention for feeding therapy.  After 3 years of feeding therapy with both occupational therapists and speech language pathologists,  Eliza had only mastered eating yogurt and continued to rely on liquid nutrition.  Sure there were the occasional days when she would take a bite of something and I was thrilled. I was thrilled the day she drank soy sauce, but it was a feat never repeated again. I remember posting a photo of Eliza taking a bite of pizza.  After I posted the photo everyone who saw it assumed that everything had been cured and Eliza was now eating like a pro.  In hindsight I suppose it was foolish of me to ever ever post a photo of Eliza and food, but like any parent I was proud of that moment, even if was not at all representative of what Eliza can and did eat at the time. Feeding therapy continued for another four years. 

The general attitude among most of the medical world does seem to be one that sort of minimizes feeding problems since, let's face it, they can be instantly "cured" with a G-Tube. This attitude of course does not factor in the huge portion of our social interaction that revolves around meals and food and that if you have no interest in food or can't tolerate being near food, or certain smells, your social interactions will be limited.

2014 started out as a promising year for Eliza for eating.  She would eat a certain type of chicken, pepperoni slices, a certain type of pizza and one or two silver dollar pancakes, nutella and some peanut butter.  None was in a quantity to provide adequate nutrition so her diet still consisted of at least 50% of protein drinks.  By some small miracle, Eliza had actually made it to 49 pounds at 8 years and 8 months and had finally grown to 48 inches tall. When she was weighed and measured at her beloved gastroenterologist in the beginning of November, Dr. L., my mother and I almost threw a party.  I had long ago made peace with the fact that Eliza would likely never be a person to delight in food, that she would probably always need protein shake supplements and that her repertoire of foods would likely be limited, but at least she was growing and enjoying some foods.

2014 was not however a good year for Eliza in other ways. She suffered greatly with anxiety for a good part of 2014 (the source of which I've previously posted), but by November and after lots and lots of therapy she was doing pretty well, had a coping "menu" of things to do when she felt anxious and overall was a pretty happy kid so long as she was within her scope of safety. 

Since Eliza was at a pretty good place at that point weight wise and her anxiety seemed to be in check, the good doctors and I thought there was some wiggle room to address her ADHD with medication.  Everyone knew that there is often a decrease in appetite from ADHD medications, but since the medications are out of your system in 12 or so hours we agreed it was worth trying.  If Eliza's appetite dropped off, I could stop the medication and presumably her appetite would return to what it was. And in theory that is what should have happened.

But there is always someone out there to disprove the general consensus.  And that someone is little Eliza.

The medication (which I will not name since it has helped many other children with ADHD) was, by week four, an unmitigated disaster.  There were some side effects that were extremely troubling (and lead to another medication) but one critical side effect was that Eliza stopped eating.  Not just a decrease in appetite but pretty much stopped eating.  And then she started to limit her liquid intake as well to about 16 ounces a day, 20 on a good day.  She also stopped anything resembling a normal sleep pattern, sleeping an average of 6 hours or so a night and not falling asleep until 2 or 3 in the morning some nights.

But although the medication was stopped, Eliza did not regain her prior appetite, mediocre as it was, despite me being assured that the effects would wear off almost immediately.  Now, weeks later, Eliza again rarely expresses hunger, does not eat the foods she had started to eat (pepperoni, chicken, pancakes) and has to rely almost exclusively on protein shakes for nutrition.

Ironically medication number 2 (which I will also refrain from naming since it has also helped many children) usually increases children's appetites to the point where parents become concerned about their children are becoming overweight. Eliza did not enjoy that side effect.  That medication was stopped for other reasons.  And still Eliza's appetite did not reappear.

It seems as if Eliza and I are back almost 8 years or so ago when Eliza was an infant/toddler with no appetite subsisting on a primarily liquid diet.  There are rare days where there will be something approaching a "normal" meal for her (a small slice of thin crust pizza with pepperoni) and then multiple days of nothing except a few GoGurts.  It is as if her internal clock for hunger has lost its normal cycle.  

Which makes me wonder, when you use a medication that has a potential side effect of decreasing appetite and the person's appetite is already on the extreme south end of normal, does it basically eliminate a sense of appetite? And if so, how do you trigger even that small appetite to come back from the abyss?  The usual appetite stimulant that gets trotted out, Periactin hasn't worked.  There are a few other stronger/different medications out there known to increase appetite, but none which, to me, seem quite right for an almost 9 year old because of the potential side effects or the nature of the medication.

Eliza is a a very creative child and she loves dragons.  She has created a dragon who does not have to eat, he can create his own hydration and nutrition in his own stomach without having to eat.  Kind of telling one how Eliza views food.

I can't blame this all on the ADHD medication.  But you would think 7 years of feeding therapy would have had some lasting effect.  But no, despite the best efforts of some wonderful therapists.

And while I also leave comments open, please do not post any comment that begins with "have you tried ___? My son/daughter loves _____!"  


My Vegas said...

No comments except to say I'm out here just listening!

Anonymous said...

Hi, I just want to give you some words of encouragement for whatever it's worth. My daughter came home with a g-tube after spending 3 months in the NICU and ate nothing for years. During therapy, it would take her 30 minutes to consume 1 teaspoon of food in a medicine cup. Yes - 1 teaspoon!! 100% g-tube fed. Like you, we did many years of feeding therapy. For several years, we saw no progress. Like Eliza, she did not feel hunger and would often cry when she knows it's time to eat. She HATED food and didn't see the point. Long story short, she eventualy learned to "swallow" and eat but she didn't enjoy eating at all. She was just trained to swallow when someone puts a spoon in her mouth. However, last year, she gradually started to enjoy food little by little. She still eats very slow, chewing is still difficult but she now likes to try new foods, etc. Please know that there is light at the end of the tunnel. Therapists would often tell me that my daughter was one of the most complex cases they have ever seen. If my daughter can do it, so can Eliza!! You're an awesome mom!!

Anonymous said...

Oh, may I ask what kind of protein shakes you give Eliza ? My daughter is underweight and I should really substitute some of her juices with protein shakes. Thanks!

Anne said...

Hi Beth,

Eliza drinks Orgain. It is a protein drink which was originally marketed for adults, but there is a children's version. I use it to make milk shakes. Orgain also makes a powder. May I ask how old your daughter is now?


Meghan said...

Hi Just a little bit of support. I was diagnosed with ADD in grad school a few years ago (a side effect of intense grad school caseloads?) and I began and continue to take a medication for it. I have the appetite suppressing side effect of this medication, which is fine for me! I have also noticed when I stop it that I have more hunger than when on it but very reduced hunger from prior to being medicated. I don't know if my stomach shrunk during the time I was on the medication and I therefore eat less, I'm not sure. All I can say is that I have loved your blog for years. I am an SLP who has learned a lot from you and Eliza. I have also educated pregnant friends who insist that some website said all parts are formed at 20 weeks and now it's just growing! Good luck on the appetite front. I'm pulling for you and Eliza. Also, I envy your trips to Saba. I'm totally volunteering as a travel SLP on your next trip. LOL!

Amy said...

No advice, no suggestions. Just sympathy and good wishes that at some point in the future (ideally sooner rather than later), she starts to eat again, and I'm glad that in the interim, you have protein shakes that she'll drink.

Laraf123 said...

Sounds like creating that dragon is a coping mechanism for Eliza . She's a creative, gifted child who will get through this in her own time. (But knowing that doesn't make witnessing a child's struggles any easier for a parent, I know.)

Deborah Carroll said...

Wow, Orgain looks great! I have actually been giving my ftt daughter multiple pediasures a day. This looks much healthier. My daughter has also struggled with eating and has gone to feeding therapy. My daughter's only foods are bites of nuggets, pizza, and pancakes too. Some days she eats better than others and sometimes days go by where she pretty much lives on pediasure. I feel guilty about giving her the pediasure because it's super unhealthy but has a lot of fat in it. Just a question-do you use the powder or the already made shakes?

Mel H. said...

Ugh, Anne, I was holding my breath while reading this because I remember that brand of despair so well. It actually puzzles me how things turned around for Daphne, all I can think is that her particular lack of appetite was caused by kidney failure and once that was fixed, all the years of feeding therapy somehow kicked in. I keep hoping for a magic fix for you too. I have a friend with a little boy a bit younger than Eliza who is going through hell trying to medicate his severe ADHDH. He stopped growing/gaining on meds too.

Anne said...

Meghan I would totally be thrilled to have a traveling SLP on our next trip to Saba!

Anne said...

Deborah I use the Orgain Healthy Kids version. The powder I can sneak into milk shakes but just mixing it with water as they suggest is not too tasty. The price point isn't much higher than Pediasure which in my circle of friends is called Vomit-sure :)

Anne said...


At this point I feel like the last man standing at the OK Corral. Every time Eliza has an endoscopy I secretly hope the doctor will say "well we found this thing and we are taking it out and she'll eat like a normal kid in a week." But no such luck.

She has created a series of fantasy dragons that don't have to eat unless they want to. But they were all born with a tube and didn't need an operation for a tube. She says she is okay with a tube but not the operation for a tube. I am seriously at my wit's end and am thoroughly sick of doctors and people who should know better saying "really she won't eat soup of (fucking) pasta."

I am just tired and so is Eliza. She'll be 9 in 2 months and there is no end in sight.

Julie said...

I am here to listen! And to bring you wine.

Barb said...

So sorry for your continued struggles. Nothing to say other than we are out here reading and your story helps others. Small consolation, I'm sure but thanks for sharing your journey so honestly and so bravely.

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