Monday, November 22, 2010

Allie's New Plan......

Allie's appointment this morning went well.  It was a long appointment but a lot of stuff was discussed and we have made some decisions on her new medical plan.

Dr. Brown seems to think that Allie "may" have Eosinophilic Esophagits (EE).  This is where there is irritation in the esophagus due to some type of allergy.  The best news is that according to Dr. Brown, most of the time this is treatable with just medication.  Granted it would probably be medication for life, but it could be worse.  Dr. Brown thinks she may have EE due to the fact on all of her previous endoscopy results, she had eosinophils in her esophagus.  These eosinophils were more concentrated on the upper part of her esophagus, however she did have some on the lower portion also.  Since all of the previous doctors we have seen have reviewed her endoscopy reports and never questioned the eosinophilis in her esophagus is quite alarming.  This is the first thing Dr. Brown questioned when he reviewed her records.  Today, Dr. Brown confirmed that if Allie has EE, this is reason enough to cause her to not eat orally.  So......our first step is to see a Ear, Nose & Throat Specialist.  We were referred today and they scheduled an appointment on December 15th.  I wasn't happy with that date so I called the ENT Specialist and they can get us in on Wednesday at 2:00.  This alters our plans for traveling home for the holiday, however we decided to go with the appointment and arrive in Esky a little later than expected.  The ENT Specialist will perform extensive allergy testing on Allie.  She did have food allergy testing at the Mayo Clinic (via blood) and no allergies were found.  This Allergist will perform extensive allergy testing, including looking for food allergies and environmental allergies.   According to Dr. Brown, Allie will most likely be tested using the patch method.  This method is the most comprehensive and reliable.  He said that blood tests and prick tests do not always show positive allergens but the patch test will.

While they will be drawing blood to check for several other things, Dr. Brown will also be checking Allie's antibodies for any gluten sensitivity.  He said that it's somewhat likely that Allie has a sensitivity to gluten which makes it very uncomfortable to eat. 

Depending on the results for what is mentioned above, we may proceed with having the following tests performed:
1) Reflux scan or gastric emptying test
2) Colon scope

The reflux scan will be checking for any reflux she may have.  Allie was originally diagnosed with reflux but medication didn't help at all so the doctors never did anything more with it.  The gastric emptying test would be performed to check the function of her stomach emptying.  We know it was delayed previously but at this point in time, we really don't know how it's functioning.  Delayed gastric emptying can be the whole reason for all of her vomiting.  Since this test will expose Allie to a lot of radiation (and she's already had a large amount of it), we could opt to just put her on medication to improve her gastric emptying.  We haven't made any decisions on this yet.  Allie was previously on Erithromycin to help her stomach empty but we didn't see any improvement with the medication.  CHW suggested we try Allie on Reglan, however due to the possibility of major site effects, we decided not to proceed with that drug.

The colon scope would be done to check to make sure everything in her intestines looks good.  When we were in the hospital in December of 09, a test on her intestines showed "something" at the end of her intestines, however they didn't think it was anything of importance so nothing was ever done about it.  So, this test would be performed just to make sure everything is working properly.

Dietician - Dr. Brown is going to do some research and help us determine what diatician in the area is the best fit for us.  I of course need to have someone familiar with kids and feeding tubes.   Along with a Dietician, he will most likely get us set up with a occupational and speech therapist and a speech pathologist.  I did inform him that we had speech therapy and OT through the Birth to 3 program and they are doing a great job - so he's not looking at replacing them just adding to our team for another opinion. 

We discussed with Dr. Brown that Allie is still vomiting and is starting to vomit more and more with what she is drinking orally.  I talked to him about starting her on a blenderized diet and he thought it was a good idea.  He would like us to start slow though.  For now, he would like us to start her off on Nestle Compleat Pediatric - it's blenderized food.  We would start by having this Compleat Pediatric food replace her Boost Kid Essentials orally and continue to put the Peptamen Jr. in her tube.  If she tolerates the new food, then we can start putting it in her tube.  I'm thinking I'm just going to start putting it in her tube.  After all, my on-line research about Compleat Pediatric food says it's not for oral consumption - because of the taste.  So, I'm assuming Allie isn't going to want to drink it - but you never know.  We'll see but I'm just happy we can get her on something besides the milk.  Once we get established with our pediatrican, I will work with her on blenderizing Allie's own food and not purchasing it through Nestle.  Dr. Brown would just like us to try the Nestle as a "trial" and see how she tolerates it.

The best news of all was that Allie grew 2 cm.  With this growth in height, Dr. Brown is associating all of her excessive sleeping with a growing spurt!!!  Wow - I'm thrilled.  I have been praying that her height starts picking up because she is very short.  So little Allie is now starting to grow.  She didn't gain any weight, however Dr. Brown was okay with that since all of her calories went into her height.  So, way to go Allie Rae!!!

There are many other things that Dr. Brown is looking into for us.  I will just list a couple -
1) performing a complete vitamin panel
2) Checking her Ghrelin hormone - possibly just for a research protocol?
3) Checking her Leptin hormone - possibly just for a research protocal?
4) Possibly altering her feeding schedule to try and reduce tube feedings

So, overall Allie's appointment went well.  We still have a long road and some decisions to make in regards to testing, etc. but I feel very comfortable with what we accomplished today.  Dr. Brown thinks there is something medically wrong with Allie and that is causing her not to eat.  He is very determined to help find us a diagnosis and I'm very thankful for that.  Dr. Brown spent 3 hours with us today and I never felt rushed, I had adequate time to ask my full 2 1/2 pages of questions and he answered every question very thoroughly.  Honestly, this is the first doctor that has taken a lot of time with us and really listened and asked questions about Allie and her medical problems.  So at this time, I'm thinking Dr. Brown is a great fit for us.  Now, the big decision as to what to do with the Children's Hospital????


  1. WOW! That is a lot to digest (pardon the pun...). I think UCLA is where the ghrelin would be checked...FYI.

    You still have some things to look into...some unturned have to delve into those possibilities. I hope that something shows up, some sort of explanation.

    I was hoping (through your appointment) that I would get some new ideas for Ava. Unfortunately, we've checked out everything you mentioned. Our GI finally said in June that she doesn't think there is a disease process causing Ava's lack of desire to eat. She's starting to think it is a brain issue.

    Good luck...please keep me posted on how things are going.
    Have a great holiday1


  2. Awesome Jodi! Sounds like you have found a doctor who is looking outside of the box, helping you and making you feel more comfortable! Eosinophils are tricky little things that cause so many problems, I had never even heard of them until dealing with Ryans Grampa when he was rushed to Madison hospital, and they finally diagnosed him with Eosinphilic Phneumonia. Should have been obvious to the numerous doctors here, however noone looked at those numbers. Anyways, best of luck for you all we are continuing to pray for your family, and hope you make some more positive progress.

  3. Jodi, I am so excited that you guys have found a doctor that is willing to invest the time and skill to help Allie out!! I am praying that you guys get some answers soon.

  4. Jodi, what is the doctor's full name and where are they out of? Good providers need to be documented so if people search, they come up. Good luck!