Saturday, April 21, 2012

Hold the Diagnosis

The appointment with the neurologist was very helpful.  The doctor was able to put into Ellie's medical file very important information that has not been there until now.  He documented her limited diet, her severe responses to corn, and her probable seizures (seizures I think need to be confirmed on an EEG).   He checked her gag reflex and swallowing abilities. He acknowledged her turned in foot and leg, hip issue, and sacral dimple/line.  He said she needs major feeding therapy by someone who is very experienced, and disagreed with some of the advice we had already been given.  He said she needed to be seen extensively by someone who had experience working with severe cases, such as stroke victims.  He brought up several things that had never been addressed, and he also helped us piece together a few new things.  This was GREAT.


We will be considering the MRI; we will not be doing the EEG.  The reasons for this are several.  For starters Ellie has never had seizures except in response to food or perhaps environmental exposure.  She has no signs of a brain tumor, has no evidence of a brain bleed, and has not been in an accident or injured, just to name a few.  NO additional complications came up or were of concern to the neurologist.  The topical glue and chemicals they would use to adhere the monitors would most certainly cause all kinds of problems for her overloaded system.  When I read the handout that said to be sure and scrub her head to remove all chemical adhesives immediately after removing them I though 'yeah right. she would be a wreck before we left the outpatient facility'.  At this point we do not see an epilepsy diagnosis being helpful.  We already know she is at risk for seizures, and aside from diet modification the only accepted form of treatment is medication, many of which destroy the intestines.  It is a label that could affect her for years to come.

And by the way....

We don't make our choices based on fear (no matter how afraid we may be). But I felt it important to note that while I am new to the world of epilepsy, it is obviously a diagnosis that is considered rather severe in the world of children.  No one doubts that seizures are scarey, and (potentially very) damaging.  Opinions on how to treat epilepsy are strong, and if you choose an alternative approach to managing seizures and your doctor is not in agreement, child protective services can be contacted.  Far fetched as this may sound to some, I know moms of epileptic children that this is happening to.  I have read major news stories of parents choosing non-traditional approaches to their child's cancer who this has happened to.  I know FPIES moms with Munchhausen by proxy in their child's charts.  One of Ellie's GI's documented that Ellie's dietary restrictions are exacerbated by an over protective and apprehensive set of parents.  Who do these doctors think they are?  Just like teachers, there are some good ones, and some bad ones, and some who have forgotten the oath they pledged.  We are so grateful for the team of doctor's Ellie has had;  we have been spared much when compared to others.

And another thing....

Additional deciding factors for us right now are rather large.  They are:
- Our insurance would not pay for an EEG and we would have to pay for it out of pocket, and
- Our insurance is changing and this doctor is not on the provider list.


For now we hold off on a diagnosis.  While this doctor is amazing and uses diet as a form of seizure treatment, we have no idea who Ellie's next team of doctor's will be.  And the potential medical bill coupled with the risks far out weigh the need for a label for new symptoms.  The goal is the same: healing.  So for now an EEG is not even making the list of 'to do's'.  We are loosing her 'team'.  And that is a pretty major event.  Or is it?


  1. Someday I pray that we never have to choose the health and well being of our children based on cost or fear of reprocussions from those who are misguided. I admire your ability to stand up for your daughter and do what you know is right for her!!


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