Thursday, December 22, 2011

EoE, AFO, ENT Updates

The week is only half over, but it has been an eventful one.  There is always something going on with little Miss Callie!

EoE Clinic
We went to Fairfax on Monday morning to meet with Callie's EoE team.  The meeting started by reviewing her last endoscopy and biopsy results.  Everything was clear.  This means apples, bananas, sweet potatoes and carrots are officially considered safe foods.  So far so good!  I was nervous, but took a deep breath and shared what was discussed with Dr. Woods.  They took it pretty well and I imagine they were not surprised at his opinion because they no doubt work with other families who have met with him.  I received the impression that they think he is a very highly respected allergist, but feel EoE is not necessarily his specialty like they consider it theirs.  That said, they advised they will go along with whatever approach I decide to take.  We had a lengthy conversation about what is best for Callie and decided on a hybrid approach.  We are going to be more aggressive, but not so much so that we will introduce everything at this time.  We are going to give her all fruits and vegetables (one at a time about every 5 days) and then scope in 4 - 6 months.  Hopefully the scope will be clear and then we will figure out how to proceed into the meat and grain categories.  I feel satisfied with this plan.  We are still being somewhat cautious, but speeding up the process and delaying the next scope.  In the meantime I have finally been doing more EoE research and discovered the Children's Hospital of Philadelphia (CHOP) has a special center for pediatric eosinophilic disorders.  It is considered one of the top 4 EoE specialty centers in the country.  I have been in contact with them this week and am working on getting Callie seen for one final expert opinion.  It sounds like it will be a very comprehensive evaluation over a 3 day period and I am looking forward to hearing what they have to say.  I guess I am a collector of opinions.  I feel like we are able to make the best decisions for Callie after seeing a variety of experts.  I finally felt satisfied last year after seeing four neurologists about her PMG.  I think I will feel satisfied this year after seeing three GI/allergists about her EoE.  Fingers crossed.

Callie has continued to be patient with her AFOs, but her heels keep popping up in them.  She is a toe walker and although the DAFO 3s are specifically made to stop this pattern and keep the heels down, she is a little Houdini and manages to get her heels up off the bottoms of the braces.  At the request of her PTs, I took Callie back to Orthotic Solutions to see what could be done to tweak the fit to keep her feet correctly positioned.  We were there for two hours while the orthotist worked on modifying them.  He tried adding a variety of different pads and drilled holes to modify how the straps keep her feet in place, but in the end was unsuccessful.  He said he would keep them and consult with the company that created them.  The next day the office called and advised we need to start over from scratch.  So we are going back next week to get casted again.  <sigh>

ENT Issues
Callie has now been congested for nearly two months.  It is like she has a never ending cold.  It is to the point where she snores loudly at night and has a constant runny nose (thank goodness we do not have the NG tube anymore!).  After going to the pediatrician a few times in November, they prescribed Amoxicillin even though they could not find any infections.  She took it for 10 days, but we did not see a change in her symptoms.  About two days later we went to the ENT for a checkup, and like I mentioned earlier he discovered she had a double ear infection.  He prescribed a stronger antibiotic called Cefdinir for 14 days.  We just finished it on Monday night.  Tuesday she woke up from her nap with a fever of 103!  I took her back to the pediatrician this morning and they are not sure what is going on and how she can have an infection after two rounds of antibiotics.  Her left ear looks good now, but the right ear is red.  Both still have fluid.  They prescribed a third antibiotic called Azithromycin.  I expressed my concern over so many antibiotics, so they said I can wait 48 hours before giving it to her to see if the fever fades by itself (indicating a virus).  We will see what happens.  In the meantime I placed a call in to Dr. Silva (ENT) to get his opinion, but he was in surgery today so I will have to wait to hear back from him tomorrow.  I just feel so bad she has had to deal with these symptoms for so long and now a fever.  But despite all that is going on she continues to be happy and nearly always smiles, especially for her big brother.  


Anonymous said...

Just wanted to let you know that i am are in my heart and prayers. -Holly


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