Tuesday, May 24, 2011

Inpatient Feeding Clinic

After Allie's feeding session today, my original thoughts about putting Allie through an inpatient feeding clinic were reassured.  Allie's therapist does not feel that her therapy is enough for Allie.  She suggests that we get Allie enrolled in a feeding clinic sooner rather than later.

Of course the goal of the feeding clinic is going to be to wean Allie off the tube but I am not setting our goals too high or making unrealistic expectations with our first wean attempt.  I have been in contact with the Children's Hospital of Wisconsin and talked to Dr. Fisher (our previous doctor) about their 2 week inpatient program.  Their program focuses on behavior and it will be similar to the outpatient feeding intervention we went through in October 2009.  Since we stopped receiving medical services at the Children's Hospital of Wisconsin a year ago, (our choice to leave)  we will be set up with a new team of doctors (feeding team) and Allie will need to be evaluated and approved for the feeding clinic.  I'm hesitant to go back there but we will not be moving her primary care there it will strictly be for the feeding clinic.

I have also been in contact with Marcus Wilken.  He is originally from Australia but is now collaborating in the US with Spectrum Pediatrics in Virgina.  He seems interested in Allie's case and I'm waiting to get more detailed information from the owner of Spectrum Pediatrics.  I'm very interested in their program because Marcus actually comes to our home and helps wean Allie off the tube.  He stays as long as needed and his program is based on the fact that every child feels hunger.

I have looked into other clinics as well but right now, I feel that these are our two best choices.  I won't be making a decision until I finish getting information from both places.  Like I said previously, I'm not setting our expectations too high and if our first attempt at weaning Allie from the tube doesn't work, that is okay.  I know Allie is very stubborn and strong willed and I think she will put up a very good fight or just give in.  Not sure what path she will take but we won't know until we try.

The decision to send Allie to an inpatient feeding program is going to be a hard decision.  I know these feeding clinics can be brutal on children especially strong willed children.  I have spent my whole life protecting her and once she's at the inpatient feeding clinic, I have to follow their rules.  When Allie went through the outpatient feeding intervention at Children's in October 2009, it was one of the hardest things on me.  Allie was not force fed but damn near close to it.  Her intervention at that time was outpatient and it was a week long so I know this next intervention is going to be even more intense.  I know a feeding intervention is exactly what Allie "might" need in order to eat orally. I also know a feeding intervention could take a turn for the worse and her behavior and feeding habits go downhill even more.  Big decisions we need to make and I'm not sure how we are going to know what the right decision is.....

Look daddy is teaching the girls how to wear makeup - lol. 

Yes, Allie is really this tan or orangish color (not sure why but her carotene level is very elevated)

No, Chloe is not a ghost she just looks very pale in this picture.


  1. HUGS!! I just want to remind you of my support. And I want to tell you a bit of encouragement I got from one of Haven's therapists in regard to her stubbornness. She said that the same stubbornness that keeps Haven from eating will one day be the driving force that gets her to eat and gets her off the feeding tube. She painted a scenario for me where Haven decides she is done with having a tube and fights due to her stubborn, strong willed nature, to get off it. I had only focused on how it was hurting her and not how it could one day be the "cure". I hope that encourages you too.

    If not...just come to Italy with us for the summer and we will worry about the rent in Holland when we get home! : ) HUGS to you and Allie!!

  2. I stumbled upon your website this morning, and it seems we're in a similar situation. We're in Arizona, but have been struggling with my daughter's inability to come off her G-Tube. Her reasons are primarily behavioral, so our GI team has been in contact with Wisconsin. I'm getting frustrated at their lack of communication, and am looking into alternatives. Would you mind sharing your research or what you're finding? My personal email is azheartmom@gmail.com

    I so appreciate your blog!!

  3. Steph - thank you for the encouragement and I think your right. When Allie decides to be tube free, she will be very determined to do it - it will just need to be on her terms :) I still would like to go with you to Italy and your right, we can just worry about the rent in Holland when we get home - lol!!!!

    Jodi (Allie's mom)

    Gracie & Gav's mom - I would love to share my experience with you. I can also get you in contact with one of the main correndators for the feeding program at Children's Hospital of Wisconsin. That might help speed up the communication. Allie was originally seen by a team of specialist at that hospital and we have never had a communication issue - so maybe getting in contact with the right person might help. I am heading out of town for the long weekend but I will email you when we get home. I checked out your blog and your kids are amazing. I know of another mom who's son has EE - if you would like to connect with her, let me know. Hope you have a great weekend and I look forward to talking to you!!