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.
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