No, Thanks.

With the change of medical groups Ellie became the proud recipient of 7 specialist referrals. I think. I lost count. Some good. Some ridiculous. And some a flat waste of time.

My personal favorite was the new neurologists referral for an autism evaluation.  Huh?  When I questioned her she explained that she felt Ellie needed to be evaluated for harbored anger and management of emotion. Oh, and she would not look the doctor in the eye when on the examining table alone.  Whatever.  It was obvious that she really wanted to help get her the intense feeding and sensory therapy that she needs, so we will jump through whatever hoops we need to.

Neurologist also wants an EEG. No harm, no foul is the motto. What could it hurt? It would be good just to see. Might show something, or might show nothing.  Afterwards we will determine if we should use medication.  *AHEM* No, thanks. For starters, Ellie's seizures have been controlled since starting GAPS.  Seizures are directly related to the immune system.  Standard treatment protocols for epilepsy includes gut-thrashing medication and hope for seizure control through the ketogenic diet.  Kids on keto have to be strictly monitored because keto does not meet all of their nutritional needs.  In addition, kids with an epilepsy diagnosis can have treatment mandated should the doctor deem it necessary, and then Child Protective Services become involved. (yes, seriously.)  An EEG may show seizure activity or it may not.  In fact, I found it interesting that the first neurologist had one way he wanted the EEG done and the new neurologist another.  At this point in time, there is no helpful reason to put Ellie through an EEG.  An official epilepsy diagnosis at this point in the journey would add nothing.  We are declining.

Another more obvious referral was to the allergist.  It makes sense to the pediatrician we would need one of those.  I didn't see the need quite as much, but agreed. I received a call from the allergist's office.  They informed me that they were unable to get the information they needed so they expected me to get copies of all her medical records showing office visits, tests, summaries, etc. and once received the doctor would evaluate if she authorized an appointment (or some other funky wording like that). No, thanks. We declined. Not to sound like a smarty pants, but I think we have a pretty good handle on what her allergies are.

Referral to the Pediatric GI was up next.  Good to know there is one of those around. I suppose at some point we should go meet him or her.  One thing Ellie needs investigating right now is the neurological function of her lower spine and how it relates to her ability to go poop.  There are lots of spinal complications (aside from Spina Bifida) that have potential to cause issue.  The Pediatric GI would be aware of that and would help with getting any tests done.  I had thought that would be the neurologist, (wouldnt that make sense - it is a neurological complication) but not so much.  They just care about her brain.

Finally is the referral to genetics. Oh yea. That one. The referral that the first neurologist was wondering why I had never received. How could a child with such complications have never received a genetic work up? Especially one with EGID (oh, did I mention that? She has a new diagnosis in her file. We are compiling them at this point like hotels in Monopoly.).  The EGID diagnosis is clinical, because I won't take her in for genetic testing or allow for another scope.  They looked at her eosinophils from when she was an infant, reviewed her tests for the first 18 months of her life, evaluated her current sensitivities, and said it is an EGID.  The first neurologist agreed that genetic testing was only if I was curious.  He is one of the top neurologists in the country, so I found that interesting - he knew all about EGID and seizures.

At this point there is no reason for us to head to genetics. In fact, it could be harmful to Ellie to have the genetically proven diagnosis of EGID in her medical file, because it is considered an illness for life. (Pre-existing condition anyone? The girl has already had a colonsocopy.)  Genetics will attempt to put Ellie in a box, where there is nothing but an excuse for her to be sick.  Mainstream medicine would love to find a genetic tie to all conditions from a cold to a heart attack, which does nothing other than rip away hope for healing.  The reality is that science is piling up for epi-genetics.  Epi-genetics is the concept that environmental factors determine which genes turn on and off, and acknowledges that there are many genes that never 'turn on'.  Over time some genes can even 'turn off'.  How's that for hope?  *insert thumbs up here*

By the way, at no time did anyone think we needed to see a nutritionist. Their examination of Ellie, review of her file, and who.knows.what.else was enough for them to believe she was getting her nutritional needs met.  Or not, and just figured an EGID was enough proof that she shouldn't be eating.  I found it amusing.  In fact when I finally said to the second neurologist that 1.5 years ago her allergy patch testing left a third degree burn on her back from corn, she said: "Oh wow. She is so severe. You really need to make that clear to everyone you come into contact with, all the time, multiple times, because we as doctors hear 'food allergy' all the time and it usually means something very minor."  Funny.

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.

BUT.....

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.

So....

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?