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 _____!"