First of all, I’d like to take a quick second and apologize, so to speak, for my last post. Even I don’t enjoy reading that one. It is obvious it was written out of a place of stress. I’m over it now. I nearly delated it about an hour after writing it over delayed embarrassment, but then realized all of you that subscribe already have a hard copy in your inbox. It was pointless at that moment…so….
Today I’m not in that place of stress anymore, I’m just feeling a bit sad for my eldest. Eleven months ago she was struck with some kind of severe stomach bug that did a number on her body and left her with what is a hopefully temporary, but still devastating in the moment condition, called gastroparesis. I’ve alluded to it here and there but I don’t think I ever fully wrote out my feelings on the subject because well…I wasn’t really sure what to say.
Up until mid-July of last year, MG had a completely normal and healthy relationship with food. I, myself, have some sensitivities and so I was always careful with her and things like gluten and dairy. It seemed like a healthy enough balance that we wouldn’t keep gluten in the house, but to allow her to have things like Cheerios in the church nursery or cupcakes at a friend’s birthday. Yogurt and cheese were commonplace in our house but she never really took to milk, and since I don’t care for it either, I never pushed it with her. The only thing I noticed was that if she did not have gluten for a long time and then would eat it, she would break out around her mouth. It seemed minor enough not to warrant a change in behavior but it was something I mentally took note of.
Fast forward to late July. Our family went on a little vacation that month and we were exposed to a stomach bug. MG got it first, but had just a minor reaction. A couple days passed and I thought we were through with it. But then…she got it again. And then one by one we each contracted it, over the course of about two weeks with MG having relapses every few days.
I took her in to see a doctor after the third day of vomiting. She reassured me that sometimes viruses can last up to two weeks in children and possibly MG became reinfected as we were passing it around to each other.
So it was put to bed for a few days. And then, it struck her again. Again I called her pediatrician. She told me not to come in but to call if she wasn’t over it in a week.
A week felt like a lifetime to watch my little frail girl suffer again. Not to be melodramatic but this week was literally one of the worst of my life. On the days she would be sick, we would be awoken to MG vomiting in the bathroom (she nearly always made it to the toilet and it just made me weep to think this little 3 year old already knows how to drag herself to the toilet in the darkness of the early morning without even alerting us first). This would come around 4-5am. Then she would lay on the floor by the bathroom and sleep for another few hours. She would want very little to eat for the day, maybe some toast and “fizzy drink”. She would lay in her bed and watch Sleeping Beauty on repeat (it was one of the few children’s movies we owned and we didn’t have cable. Later we wisened up and started checking out more movies from the library). Too tired to play, she would sleep off and on throughout the day and then fall asleep exhausted in her bed at night.
The next day she would wake up, a little off, but fine and we would grow optimistic that the terrible illness that had her in its clutches was behind us.
And then 1-2 days later she would relapse and we would start the terrible cycle over again.
At the end of the week, I called the Ped and begged her to see us again. She seemed rather surprised to see us and a little alarmed too. She immediately referred us to a pediatric gastroenterologist and our appointment was just a few days later (I think at this point it was September).
I was very pleased when that Dr. immediately seemed to recognize the problem (we saw three other doctors over the course of that month and none of them could tell us anymore than it was just a long-lasting virus). She diagnosed MG with “stomach-emptying syndrom” or gastroparesis and put her on a special diet.
When you have this condition, your stomach doesn’t clear food out as quickly as it does for someone in good health. So you feel fuller more quickly, you are more prone to stomach upset and bugs, and you have to watch what you eat as high fats, high fiber, high acids, and dairy seem to set stomach aches on the mild end to vomiting and diarrhea on the more severe end.
The diet was pretty stringent and our whole family shifted to accommodate her while we adjusted to this change. Eventually we added fiber and fat back into her diet, but in moderation or else she would get a stomach ache (still ongoing as of this month). Dairy has been a constant issue ever since and will still set her off violently if she is exposed to it.
Unfortunately she has had two of these “violent” incidents since first meeting with that doctor back in September. The first one was because this doctor told us “processed dairy” like cheese and yogurt would be okay. MG heard “cheese” and begged me for some for lunch (I had taken her off of it when the stomach bugs were reoccurring. I conceded when the doctor said it was okay but we paid the price for it.)
The second time happened about a month later when I didn’t ask enough questions at a potluck and she was exposed to it again. Both of these times brought me to my knees and after the second time especially made me strictly guard everything that went into her mouth.
We went back for a follow-up appointment in December and the Dr. seemed pleased with her progress and then dangled a little hope for us that maybe in 6 months we’d be able to reintroduce dairy, slowly.
Well here we are six months later. MG has held onto this hope that after today she would be able to start eating cheese and yogurt again if nothing else. It is amazing how much she picks up on as I never told her this would be a possibility nor tried to encourage it.
I’ve also been similarly pleased and a little heartbroken for her as she carefully tries to explain her “condition” to other kids. “My doctor shut me off of dairy” she says confidently when trying to relate to other kids. Some mistake this for a sense of pride when she talks about it but I know that it is different. There is a sense of sadness that I intone when she says this but at the same time, she is unwavering.
In fact, the only time I’ve ever seen her cry over it was after the very last incident. We ratcheted down on her diet again to give her stomach time to heal. We were out of town at the time and thankfully found a Chick-fil-a to eat lunch out (fast food places are nearly impossible on this diet). I wouldn’t let her have ketchup to dip her grilled nuggets into because it is high in acid. She broke down in the booth. Not in an agressive temper tantrum, but in silent tears. This was by far one of the lowest points for me.
Fast forward to last night. As I was getting her ready for bed I explained that she was going back to her doctor in the morning. She was laying on her back and she pumped her arms and legs in the air and said, “I can’t wait to be on dairy again!”. I tried to explain that the doctor might not give her the green light yet and even if she does, we would have to take it slow.
It was too late though, the hopeful seed was already planted.
This morning we saw the doctor and she asked the usual questions. She seemed a bit concerned that MG hasn’t put on weight since December (and she is already on the slight side). She asked us a lot of questions about her appetite and we addressed some concerns. At the end, I could feel MG staring at me, waiting for me to ask the question. I did. The response was that dairy would not be a good idea at this point and probably not until she turns 5 or 6.
I waited until the doctor left and then looked at MG. She asked me what that meant and I explained that we would have to stay away from dairy for a little longer. “Like how long?” “Until you get a little bit bigger, like 5 or 6.”
Her face fell and she got really quiet. She said, “But that’s not fair.”
She was right, and I knew it. And I could only agree with her.
So another year we will press forward of bringing “special” dairy free snacks to Sunday school and birthday parties, and always packing lunches for dinners out. If I’m being honest, I’m mad that this is the way things are for her. Four year olds should be able to eat whatever they want without having to worry about stomach aches and doctor visits and having something strange about them that sets them apart from their peers.
And she knows it too. But that little frail one is pretty resilient (and she comes by it honestly). And so we press on.