Evaluation

We made the trip to Dallas this past Thursday, Friday and Saturday for Eli's evaluation at Our Children's House at Baylor. I have to say I am very impressed. We arrived for our evaluation, were taken to a room, and everyone came in like clock-work to do their part in observing, interviewing and evaluating. Below is what was stated in the Outpatient Feeding Assessment Recommendations we received following his evaluation. Much of it is direct quotes from the recommendations by the various individuals we met with.

First, we met with the Speech Language Pathologist. She observed that Eli demonstrates "atypical aversive behavioral responses to touch of food and non-food items" and noted that he does "demonstrate oral phase dysphagia secondary to moderately dysfunctional oral motor feeding skills". She has recommended feeding therapy 4 times a week for 60 minute sessions. She also stated that "behavioral signs and/or symptoms of possible aspiration warrants a recommendation for a referral for a modified barium swallow study (MBSS) as oral intake increases to be able to participate.

Second, we met with the Occupational Therapist. She has recommended occupational therapy "2-4 times a week to address sensory modulation difficulties in relation to feeding". She also stated that Eli "presents with maximal aversive behaviors with presentation of food textures". However, we were very surprised when Eli touched shaving cream during his evaluation/"play" time with the occupational therapist. This is something new for him and is was very exciting!!

Third, we met with the Psychologist. She was able to discuss Eli's aversive responses to food, stating that these behaviors are secondary to his "oral-motor and sensory processing difficulties". She also discussed the use of behavior modification strategies during meals" and has recommended weekly consultation during Eli's treatment.

Last, we met with the Dietitian/Nutritionist. He has recommended to continue with Eli's normal schedule of tube feedings. He weighed Eli and measured his height. He said that Eli is currently at a great weight, but understand that this is mainly because of the tube feedings; he suggested some options of adding things to his milk and yogurt to add calories.

The final recommendation from the "team" is that Eli appears to be an appropriate candidate for an intensive feeding program at Our Children's House. The overall goal of the program is to provide intensive individual treatment and caregiver training to address oral-motor, sensory processing and behavioral deficits that are interfering with oral intake.

They have also recommended a consultation with Eli's GI doctor. Due to the symptoms that we described, they want to make sure that Eli does not have Eosinophilic Esophagitis (or EE for short). This is basically an allergy to food. However, it is internal and does not show up on normal blood work or scratch testing for allergies. The only way to determine if he has EE is to do Endoscopy and biopsy portions of Eli's esophagus. This will need to be done before Eli enters the program at Baylor. Basically, if Eli DOES have EE, the program at Baylor will not work if the EE is untreated. So, we have called Eli's GI doctor requesting that the scope be done as soon as possible. For more information on EE, you can visit http://www.eosinophilicesophagitishome.org/. (Thanks, Mom, for finding this for me!)

This is where is gets tricky again..... Basically, Eli's GI doctor is frustrated because we are going elsewhere for treatment. They apparently want us to stay in Lubbock and continue with therapy. All of Eli's therapists in Lubbock have been wonderful..... But when we've been doing therapy here since October 2010 and nothing has changed (Eli has actually regressed) IT'S TIME TO TRY SOMETHING NEW!!!! The doctor, I guess, doesn't see it that way. So he's being a bit stubborn. I know what you're probably thinking... "Go to another doctor!" The problem with that is that there are only 2 pediatric GI doctors in Lubbock and they're partners. So, another doctor is out of the question, unless we decide to go to another town which will only delay getting the procedure done.

So, we're anxiously waiting for Monday morning to get here so we can contact the GI doctor again to see if he is going to do the procedure. While talking to the director of the program, she told us that there is an opening in the program in JUNE!!!! So, if we can get the procedure done ASAP and make sure that everything is squared away with Eli's insurance, we could be going into the program as soon as within a couple of weeks. However, if the procedure and insurance delay things, we will not be able to go until August, as all the July slots are full. So, now we wait! It seems like we've been doing a lot of that, but we are making progress! One more thing is checked off our list! So, whether it is in 2 weeks..... or in 6 weeks.... BAYLOR, HERE WE COME!!!!! =)