Day 36 - Still a Mystery Child

Allie had feeding therapy today at the clinic and she ate pretty well. She ate 3/4th of a corn dog and 1 go-gurt. It wasn't enough calories for a full meal but it was calories consumed!  Our regular therapist is back from vacation so her and I had a good talk today.

Ms. Anna (Allie's feeding therapist) has been a feeding therapist for many years (actually Anna is ready to retire).  In all of her years as being a therapist, she has never helped another child like Allie.  Most children with feeding issues have the inability to eat, oral aversions or other issues, but she has not encountered another child like Allie.  Allie has every ability to eat (safely) but simply refuses food after a couple bites.

Ms. Anna has been helping Allie for several months and she does not think that Allie's eating issues are behavioral.  She has seen Allie willing and able to sit at the table and consume her meal.  Ms. Anna feels that if a child has behavioral issues with eating, they will NEVER come to the able to eat and willingly eat.  Allie will sit and eat at the table at therapy about 70% of the time.  So, Ms. Anna said if it's behavioral, Allie wouldn't be complying so often at therapy.  30% of the time at therapy, Allie will take 2-3 bites and declare she's done eating.  One Allie makes up her mind she's done eating, you can almost bet you won't get her to eat anymore. 

Allie has no oral aversions, she will try everything and anything.  She can handle all textures of foods with the exception of very chewy meats.  Since Allie's behavior and energy levels have not fluctuated with our tube weaning attempt, Ms. Ann is thinking the same as me - Allie doesn't feel the "hunger sensation".  Ms. Anna seems to think that going 1 month without adequate food would have triggered Allie's hunger by now - however, nobody knows for sure of course.  Ms. Anna is writing up a short progress report and sending it to Allie's doctors so they all fully understand where she is at with eating orally.  She wants to make it clear to them that Allie's oral intake is sporadic, there is no rhyme or reason to it at all.  Some days she eats a little bit and other days she eats next to nothing.

Our weight check for this week was cancelled so it's been re-scheduled for next Wednesday.  Allie's GI doctor wanted to give her new appetite enhancer medication time to kick in before our next weight check.  So, after that weight check, I will be consulting with Dr. Brown and see what his thoughts are.  I have now increased Allie's liquid intake with her tube.  I'm getting nervous about dehydration since Allie is consuming less and less liquid.  Yesterday when I was giving her a quick bolus feed with water, she was telling me she wanted food with it.  Not sure if she was joking or just hoping we go back to tube feeds shortly.

So, our roller coaster continues but I must say that Allie is doing amazing!  She is still full of energy and continues to be her feisty self!  She joined dance class a couple weeks ago and is loving it - I think she's a natural born dancer (with her own special moves).  The girls are really enjoying their summer - they play with friends almost everyday.  I'm enjoying the summer with the girls, however I'm extremely stressed.  Feelings of not being able to get Allie a diagnosis is creeping up again.  This tube wean has really taken a toll on me and watching Allie consume very few calories each day is still hard to digest.  It's just extremely frustrating to watch your child refuse food day after day.  But I have to keep looking at the big picture and in that picture, we are all doing wonderful! 

Pool time!

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Day 34 - Appetite Enhaner Medication

Day 34 - wow, it's been over 1 month since we started this wean.  Part of me feels like we are slowly drowning but our rescue will be coming soon and another part of me feels like we are not drowning at all we are simply learning how to swim.

I have done a lot of thinking lately about Allie not enjoying food and simply just being not interested in food.  For 3 years, I have watched and studied her every move when it comes to eating orally. I have watched how she takes 2-3 bites and then simply announces she's done eating.  I have watched her tell me she's hungry but then when we put food in front of her, she's not interested.  I have watched her eat a whole hot dog at times with no problems at all.  I have watched her drink the majority of her calories and the next week not drink anything.  There is absolutely no rhyme or reason in regards to Allie's eating habits.  But, the more I watch her and study her, I'm almost 100% convinced she doesn't feel the "hunger" sensation.

When you or I feel "hungry" and we don't have access for food immediately, we feel different.  We may get shaky, upset, irritable, tired, get a headache, etc.  Then, when we satisfy our hunger, we feel back to normal again and we continue on our day.  If we don't consume enough calories throughout the day, we feel tired and sluggish at the end of the day or throughout the day.  One thing I have noticed about Allie this past month is that no matter how little calories she consumes each day, her energy level and behavior is consistent.  Allie has not slowed down even 1 notch since consuming very few calories.  She sleeps the same amount of time during the nigh and during nap time (actually her naps are now shorter) and her energy level while awake is still 100% full force ahead.  Allie's behavior never changes when she does or doesn't eat.  It seems as if food doesn't affect her at all.  Kind of like she doesn't need food for energy.  It's a very strange concept and if I wasn't witnessing all of this with my own eyes, I probably won't believe it. 

Since Allie's energy level and behavior does not change while consuming very few calories, I'm convinced she doesn't feel hungry.  There is no way that a little child could feel hungry and not cry, wine or simply be upset about not satisfying the feeling.  There is still the possibility that Allie feels "hungry" but doesn't understand the sensation, however my thought is her behavior or energy level would still change if she felt it even though she didn't know what it was.  She would still feel different than normal and act out on the feeling.  Of course I'm no doctor but I do know my little girl and the more I study her, I'm beginning to truly believe she doesn't feel the "hunger" sensation.

Matt and I have been talking a lot about Allie's tube weaning progress and we both feel like it's going down hill.  Allie is losing weight and consuming less food orally than before.  Of course we don't want to give up just yet, because progress could be right around the corner.  We both agreed we should try Allie on an appetite enhancer medication again.  This seems like the optimal time to try it.  So, I contacted her GI yesterday and he agreed.  We started Allie on Erythromycin last night and we are hoping to see her appetite increase in the next couple days.  Allie was on this medication a year and a half ago and we didn't see much progress, but we are hoping this time is different. 

Since Allie lost weight at her last weigh in, I made an appointment for tomorrow morning for another weight check.  We'll see if the scale tips up or down - of course we are praying for up!

On a very positive note, Allie had a great feeding therapy session today and she ate like a champ! YEAH ALLIE!!!

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