My son is an odd case. We just got a diagnosis of an EGID - EC to be specific. Along with that, there has been 5-6 months of extreme feeding difficulties... he gets 98% of his calories by sleep-feeding. We currently are in the progress of getting feeding therapy evails, which they are almost positive he'll pass for by talking with them over the phone. His scope and biopsies showed LNH throughout the colon and rectum, and biopsies indicated a extremely high number of extensively degranulated eosinophils throughout colon. We will be seeing an eos team this month. He's slightly anemic and his IgE levels are very high ... first question - what do IgE levels mean? Also, he gets Hives everyday and has SPT'd neg to over 20 foods and cat.dog/. He has been on neocate only for 4 months w.out improvement in the feeding and prior to the scope. He has chronic constipation and a history of diarrhea before the neocate. Most kids with EGID's are delayed in some areas. My son has reached all of his milestones at an extremely early age.....
able to lift head unsupport of my chest at birth, first social smile at 1.5 weeks, able to roll both direstions by 6 weeks, accurately grabbing for objects at 2 months, able to sit unsupported by 3.5mo, babbling dadada, bababa at 4mo, started lunging forward at 4 months, mastered crawling by 5 months, pulled to stand at 5.5mo, crusing by 6mo, correctly calling me Mama and dad Dada by 7mo, Has words...("bumble bee" at 6mo, "hi doggy" at 6.5 and now mimicking other words too at 7mo) .... at 7mo now standing independently, waves "bye-bye", has been laughing a jokes in the house and on tv for months now... the list goes on.
So, my problem has been I don't get taken seriously when I present his feeding and GI issues to our pediatrician's (now been through 2 of them) ... they both say, oh "he;s doing amazing developmentally he'll out grow all of this."
Well, since we have a ppo, I took my son myself to the pedi GI at 2 months of age... and after loads of reflux meds, to no relief, and several months of neocate - I begged my our GI for the scope - good thing, it shed a lot of light on the issue and seem to be getting more support from our Gi as far as feeding referrals, allergist and eos specialist referrals now with the scope. Our pediatrician is still saying "things things are so rare." (medication allergies(amox, omincef, benedryl twitching episodes, hives everyday, etc...) and I really feel they can not look past the fact that he "looks great." I know all of these issues are very rare, but in talking with other parents of kids with EGID's these reactions are sooo common, medication, food, air born, antihistamine intolerance, etc... the main diff with my son is he is not delayed...
I am so overwhelmed with his feeding issues, and literally our lives revolve around sleep-feeding, that I can't keep up with what he needs developmentally.
what do you suggest I can do to A) get our pediatricians more on board and understand the EGID issue adn to take us seriously, and B) to give my son what he needs with developmental stimulation?
I may not have been very clear with everything - things are soo complex ... but that was a brief overview!
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