Eating Disorders

Ok, next matter of business – Still Wesley:

At around 6 months of age we decided to try solid foods for little Wesley.  He was watching us eat and was always trying to grab the food out of our hands.  We sat him in his little high chair, mixed up some home-made baby food and tried giving it to him on a spoon.  He seemed intrigued by the idea that he was eating and would put the food in his mouth.  However, right after the food got in his mouth, he would start gagging.  Gagging and choking on the food.  I have an unnatural fear of choking and decided that this meant that he was not quite ready to eat solid foods.  We thought giving it another month might be a good idea. 

We sporadically tried different foods over the next few months.  He seemed to like anything we gave him (the flavor was fine), but he continued gagging on EVERYTHING.  Pureed to perfection = still gagged.  Sort of lumpy? = gagged.  Solid? = Gagged.  Anything that passed his lips resulted in gagging/choking/throwing up.  Around February the Dr. suggested we go see a speech pathologist.  (Yes, strange I know, but apparently the same muscles are used for swallowing and talking.)

The speech pathologist was a completely foreign world.  She first suggested that we go to Children’s and have Wesley’s throat looked at by an ENT specialist.  She said that he had a raspy little voice and she wanted to rule out a medical problem with his throat before we went any further.  I took him to Children’s and they stuck a camera up his nose and down this throat.  The procedure confirmed that structurally every thing was normal.  They saw small little nodules on his vocal cords contributing to the raspy voice, but they weren’t concerned about them and felt they had nothing to do with the swallowing issues. 

After the ENT, we went back to the Speech Pathologist who suggested we  buy Wesley this little horn toy.  She thought that maybe we was not breathing right while he was eating and perhaps blowing on the little horn  would help him learn to hold his breath long enough to swallow a few things.  We bought the horn.  Wesley learned to blow it and loved it for that matter.  However, the eating did not get any better.  He continued to gag on all pureed food, but had started “eating” solid foods by chewing them up to a disgusting mushy substance and then spitting them out.  Awesome, I know.  He didn’t seem to mind the flavor of most foods, but would only chew – no swallowing. 

Next, the speech pathologist suggested we buy these strange little biting tools that are meant for helping children get used to the feeling of food on their gums/teeth.  He used the little biting toys at her office during our weekly visits (YES - Helmet appointments AND weekly visits to the speech pathologist for eating disorders…).  Anyway - he used the biting things during the weekly visits and she thought if perhaps his issues were centered around sensory aversions to food, the biting tools would lessen the sensory sensations.  I was skeptical of this route because I didn’t think he had any sort of aversion to food.  He would put EVERYTHING in his mouth.  Peppers.  Olives.  Carrots.  Apples.  Beans.  Green Beans.  Bananas.  Crackers.  Did I mention Peppers?!  The taste/texture didn’t seem to bother him (well except the fact that he was still gagging on purees).  The biting tools were shaped like the letter “P".”  The bottom straight part of the “P” was where he would bite.  The roundish top part was for holding on.  I ordered the little biting tools and we took them everywhere with us just as we were instructed.  (In fact, we even brought them with us on our road trip to Utah for Easter.  We packed the car with clothes, food and Dr. prescribed chew toys for our son.)

The biting things didn’t seem to be helping much - he was still spitting everything out.  I had sort of resigned myself to the fact that he was not ready for solids.  I didn’t want to deprive him the chance to “try” to eat, so I got some fabulous bibs from one of our amazing friend’s mom.  She sews them and they go over the baby’s arms, tie around the neck and have a little pocket up front… perfect for catching chewed up mush!  It was really hard to keep giving him the food that I knew he was just going to waste.  I mean, have you seen the price of an organic apple lately?!  However, the Dr. and the speech pathologist suggested that we keep giving him food so that he could “practice.”  They all kept saying that he would get it – eventually.

We kept going to speech, working with strange biting tools, and trying strange cheek stretching techniques.  Nothing seemed to be working.  The speech pathologist said he was a medical mystery to her and we discussed that maybe we would see more change after he got the helmet off.  Yes, another reason to HATE the helmet was exactly what I needed in my life…

After the helmet came off, we didn’t see too much immediate improvement and we were coming up on Wesley’s one year birthday.  I was starting to panic.  He is a big kid and I doubted that he was going to able to live on breast milk alone for too much longer.  The speech pathologist saw my concern and decided that it might be worth it to try going to an Osteopathic Dr.  OK.  Anything! 

Luckily, we live in an area where alternative medicine is easy to find.  I called an Osteopathic Dr. in Seattle that specialized in eating disorders for infants.  He had lots of information on his website on feeding/swallowing disorders for newborns.  I figured if he could help a newborn that had swallowing issues, he might be a good place to start.  We had our first visit with the Osteopath.  He explained that he believed that Wesley was not swallowing because the muscles in his head were out of alignment from the surgery.  The bones had been reshaped, but the muscles had not been changed.  He explained that he had never had a child that he couldn’t help, but he also let me know that he had never seen a case like Wesley’s.    He said we could start with bi-weekly treatments and hopefully after about 5 sessions we would be done.

Around May, Emilee came out to visit and we noticed that in the midst of Wesley’s chewing and spitting out food, he “may” have actually eaten a bean.  Yes.  One little black bean.  A few days later, we noticed that he also may have swallowed a sliced olive.  We were skeptical, but had proof in his diaper! (Gross, I know, but totally true!).  Maybe he was making progress?  After only one appointment? 

We kept going to the Speech Pathologist and she suggested that we buy a strange purple sippy cup thing that may help with drinking.  Wes couldn’t figure out a straw yet and the cup had a hole in the lid where he could tip it back and drink the liquid from the hole. (We thought that maybe we could give little Wesley smoothies packed with nutrients if we could get him to drink them --  At this point, he would take milk from a bottle, but that was ALL.)  She also suggested that we buy a little honey bear drinking tool.  The honey bear has a lid with a really long straw.  The purpose of the honey bear was to squeeze the bear while the child tried to suck on the straw.  The liquid would come up because you were squeezing it, but the child might learn to suck from a straw by “practicing” with the honey bear.  Sippy cup – purchased!  Honey Bear Drinking Cup – purchased!  Osteopath scheduled!  Like I said, this was a very foreign world and  I was desperate!

After the 4th appointment with the Osteopath (where he would gently massage the muscles in Wesley’s face/neck/head/hips/spine and Wesley would SCREAM his head off) we also had an appointment at the regular Dr.  She checked Wesley’s stats and felt it was important to have him checked by the nutritionist at Children’s.  She said he was not growing like she wanted him to and she was a little worried.  I told her that I had been telling Children’s for 6 months that he wasn’t eating and that no one was taking me serious.  I told her that I had asked for more information on swallowing issues with the helmet and no one seemed to believe me.  I told her that I would go to the nutritionist, but that I was not a fan of how Children’s was approaching this issue and I was going to keep my 5th (and magical) appointment with the Osteopath too. 

I had my 5th appointment with the Osteopath the same day that the honey bear arrived.  Steve’s parents were here and Bob and I were amazed as Wesley started drinking a banana/strawberry/kale/mango smoothie through the bear.  He was progressing slowly, but he seemed to be catching on.  Was there hope?! 

I took Wesley to the Nutritionist at Children’s.  I appreciated what the poor girl had to say, but felt like she only told me things I already knew.  Um, have you met my sister?  She researches nutrition daily.  Give him coconut oil – check!  Avocados – check! Ice cream – check!  Give him anything high in healthy fat, packed with calories.  The goal was to try to get his weight up while we worked on the swallowing issues.  We were discussing the next step in the “treatment plan” and Wesley started crying.  He was grumpy, hitting me, biting me (Oh yes, I forgot to mention that apparently biting is common for kids that don’t eat… they need the stimulation of the biting feeling and when they don’t get it with food, they seek other things…).  Wes was a crazy person and out of desperation, I gave him a cracker.  I knew that he would chew it up and spit it out all over the nutritionist’s office, but I needed to listen to what she was recommending.  I handed him the cracker and waited.  He took it, chewed it, and swallowed it.  What?!  I gave him another one.  He took it, chewed it, and swallowed it!  I have no idea what the nutritionist said for the rest of the appointment.  All I know was that I was crying and Wesley was eating.  5 appointments with the miracle dr. and a magic honey bear and we were on to a new chapter of our lives!!!!

Since then, we have been progressing slowly.  However, now he eats!  He eats soups, salmon, vegetables, sweet potatoes, cheese, yogurt, crackers, cookies, olives, beans, grilled cheese sandwiches, quesadillas, you name it!   I cannot explain how grateful I am to the WONDERFUL speech lady who didn’t give up!  She tried everything she could think of and was willing to go outside of the box.  She worked with me, with Wes, and even with Evan on a few occasions.  (He is still my picky eater.)  She was amazing.  Totally amazing!