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|06-14-2006, 07:33 PM||#1|
back from Infectious Disease Specialist
(Follow up to "stressed sick baby" below) We saw the I.D. doc today, hoping for answers. I'll try to keep this short.
She was SUPER thorough. It was only a 15 min wait to be seen, and she stayed with us over an hour and a half
Prior to the appt her research etc went like this:
get a call from my ped, 30 min discussing case
chart dropped off, reads it at home that night, calls my ped, 45 min chat
schedules team meeting with Drs at Childrens. 8 Drs spend 2 hours reviewing chart and brainstorming.
Calls my ped who orders new tests and asks me questions and adds another abx
My ped calls her back, 20 min chat
Preliminary labs come in and are faxed all OVER.
Phone conference with Children's Team, 20 minutes
sets up phone conference with 4 colleagues scattered all over America
that conference lasts 45 minutes
last night she re-read chart
meets me with a list of questions
takes copious notes
orders NINE vials of blood to be drawn. and a chest xray. Nice nurse calls to see if 2 tests can be run on one sample since she thinks they can. I don't know the answer- so either 8 or 9 big tubes of blood were drawn. They used a pediatric butterfly so it took TWENTY long long minutes to draw the samples.
She STILL says he could have CF even though the tests said no... long explanation but its POSSIBLE.... I'm just not buyin' it.
Hopefully the tests will tell them where/how his immune system is malfunctioning.
She wants him to see an asthma Dr and an allergist (done and done- the immunologist we see Monday is ALSO asthma and allergy )
She wants us to see a developmental specialist because "he seems significantly delayed cognitively" and "we should sort out the root of that issue" but agreed that it could wait until the next neuro appt and that perhaps the neuro could fill that role himself.
She wants his delayed fontanelle closure "dealt with" but we didn't go further into that so I assume the ortho guy will have something to say on that front Moday afternoon? When we see him about limb length discrepancy
She's really as baffled as the next guy. But feels certain there is something wrong and hopeful that we'll find out what it is... but did make it sound like it could be a long road still.
Meanwhile DH took the bigs to the dentist. DD needs an orthodontist ASAP for a sideways tooth and partially impacted 6yr molar
And we got the ceiling in her room up!! (her ceiling caved in about a month ago and was a HUGE mess and the dust triggered asthma in my oldest and DH and some of it, plaster, hit me in the head and my head is STILL sore where it hit UGH) More work on it tomorrow, and painting etc... but its coming together
Kim, mom of 5