Anorexia [an-uh-rek-see-uh]- noun – the loss of appetite and inability to eat.
Imagine hearing that your 7 year old has anorexia. My SEVEN year old? Just the annotation of the word itself brings fear into any parent’s mind, let alone at the ripe, young age of seven! But, Princess JF has been dealing with chronic constipation since last April. We have been to the emergency room at least 4 times because of it and last Thursday when we took her in we did not get to come home for five days!
The doctors all tell us that children find that when things are going awry all around them, they try to control one of two things they know they can: their bowels and food. Princess JF began with the bowels 10 months ago (just after my mom was diagnosed with Mantle Cell Lymphoma) and the withholding of food didn’t happen gradually, it was an abrupt denial of anything for a week! We tried to get her to eat countless times… spending money on pizza when we did not have it to spend just because she said she wanted it. Well, she ate one small piece and it was the very next day at breakfast, after coercing her to drink a chocolate nutrient shake, that she vomited on the table and we decided to take her back to the ER (we had been there one week earlier with the constipation and her 2nd urinary tract infection in about 6 weeks).
I must admit, the hospital we go to is typically very thorough and I think they either decided we were just obsessive parents or we got a lazy doctor. He felt her tummy for a minute and then sat down and told us we needed to make an appointment with her Gastrointestinal doctor. That was it! Nothing more! Well, ok… we left and called the GI he gave us since it was in the same hospital and were told they did not accept our insurance. Next, we called Princess JF’s GI doctor and their first available appointment was almost week away! We knew she had already lost a pound and a half over the past week and she really couldn’t stand to have lost that. Knowing my sister worked upstairs in the hospital at a pediatrician’s office, we headed to the elevators to ask her if she could help us find a GI doctor that could see us that day and take our insurance!
Fortunately, seeing my sister really paid off! One of the doctors in her office specializes in eating disorders and she wasted no time in making some phone calls. Within 10 minutes she had called around and we were given a list of tests that would be run after our daughter was ADMITTED to Children’s Medical Center in Dallas! Admitted? What? I had to contain my thoughts, call our oldest two to let them know what was going on since they had the baby, and then call my mom to arrange a ride for Princess JL at school. One more quick call to my dad to fill him in and we were off!
After spending 12 hours in the ER as the doctors went back and forth in disagreement over what should be done, we were finally admitted and given a room. I fully expected to be there through the following afternoon and then going home. Ummm… nope! We arrived on Thursday through the ER. Friday, Princess JF and I spent the entire day in the hospital room as a team of 6 doctors, 3 psychiatrists, 1 play therapist, 1 nutritionist, and a handful of nurses came in and out. There was so much information to absorb and lots of instruction for me as I was told to begin a calorie count, measure urine output, watch her IV, listen for monitor alarms… Ugh! Ok, ok, give me a second here!
By Saturday we were settled in enough to know when the playrooms, library, and art studio were going to be open. We were also given the freedom to actually leave our room after her IV was taken out and all the leads on her little body were removed. She kept me going and I was able to trade off with my mom and Princess JL for a 3 hour break. As I went home to gather some more things, the two princesses were able to go to the playroom and make crafts and just spend some time together. All the kids really missed having both Princess JF and I at home! It was pretty hard on us as a family! Princess JL ended up spending the entire day up there… coming up with my mom, staying after she left, and leaving with SuperDad when we came and left for the night. Princess JF seemed motivated to get out and began eating and drinking better that day!
Sunday was another busy one with visitors, but again, it kept her morale and motivation up! Her calorie count was 117%! She REALLY wanted to come home! SuperDad and the other kids, minus the baby, spent most of the day with us at the hospital, switching out that evening with my parents so we always had someone to watch Princess JR. (So glad we have my parents… would be completely lost without them)! This was also the day we had to start Princes JF on anti-depressants. That was such a hard decision to make, but getting her to eat and thrive after we got out of the hospital was, obviously, important to us and we felt it was the best choice. We agreed to a short trial with the medications and are praying she will never again have to take them once we get her back on track!
Monday was full of playrooms, library time, the art studio, the large train display, the miniature houses, whatever we could find to keep busy within the walls of the hospital! I was BEYOND exhausted! But I was also more than thrilled when the doctor came to find us in the playroom to let us know that we were going to be discharged! Hallelujah!
Now, the real work begins. We have to follow up with her GI doctor (done for this week), her PCP (also already done for this week), a urologist (Monday appt), a psychiatrist (Tuesday appt), and, finally, a play therapist (still trying to find one that will take insurance). We have to pretty much “retrain” her to use the bathroom as well as how to eat! Scheduled potty times and several small meals a day must become part of our daily routine. Miralax and Lexapro (the smallest possible dose) are now everyday medications. School has become a rarity because she tells the psychs that is where she holds her most anxieties… and it shows! She has no desire to do anything that involves getting ready for school… showering, getting dressed, eating breakfast, brushing teeth, homework… if she knows it gets her one step closer to going to school she won’t do it without a fuss. Yesterday she went to school half a day (breaking down and going to the nurse at 10am) and today she was up at 3am crying and complaining of a stomachache… she stayed home since we didn’t get any sleep from that point on.
She has always really enjoyed school… and loves to stay busy, hence one of the main reasons we chose to put her in the public school system! She makes the A Honor Roll every 9 weeks, is on an advanced 2nd grade reading level (she is currently in the 1st grade), and always becomes the teacher’s pet (she was the 1st Student of the Month this year and has received other similar awards throughout the first semester). She never talks of bullies, loves to read, and her class adores her (several people tell us this is so). So… why doesn’t she want to go to school anymore?
My mind is in complete disarray as I try to process everything and attempt to figure out what is the best way to help her get better. Our main issue right now appears to be school… but we are torn on whether to pull her and homeschool her like her older siblings or to leave her in a attempt half days for a few weeks to let the medicine “kick in” (as suggested by her psychiatrist). And, on a side note: when I suggested homeschooling her to the psychiatrist she (the dr) immediately shook her head and said, “We don’t typically approve of homeschooling children due to the lack of socialization.” I looked at her and laughed (which she didn’t find amusing) and I told her I didn’t believe in that myth. “My older two children have been homeschooled for the past 9 years and I hardly ever see them! They get plenty of socialization through our church, homeschool groups, co-op, their friends’ friends, and, yes, even Facebook!” She then said , “Well, typically, we don’t suggest it… but in this case…” Hmmmm…
Anyways… I simply needed somewhere to get this all out! My poor SuperDad probably doesn’t know what hit him! Being away from home for 5 days left my love tank completely empty (I am totally a quality time person) and the stress of it all seems to come out on him without him expecting it. We haven’t had too much time to really talk about things because we’ve been so exhausted! I am praying the weekend brings some relief from all of it! Although I know we serve a mighty God, I am still concerned about my part in all of this!
God, help me to know what I need to do! Help me to understand why she doesn’t want to go to school. Teach me how to be more nurturing when she repeatedly complains of a stomachache. Help me to distinguish between a real stomachache and a simple call for attention. Lord, show me how to better understand what she needs from us so that we can fully comprehend her anxieties. Lord, reveal yourself to her in a way that she can understand that with You, anything is impossible and there is no need for her to be anxious. Lord, give us the tools we need to walk her through this journey. Continue to surround us with family and friends that are praying for us and holding us up as we walk this walk. Lord, THANK YOU for being an ever-present help in my time of need. Father, be with our family as we help little Princess JF triumph over her chronic constipation, her anorexia, and her anxieties. Give us strength when we are weary, give us the knowledge that we seek, and continue to give us more of You as we seek after your face throughout this trial. In your precious Son’s name I pray, Amen.