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geckoed 06-14-2006 06:33 PM

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 :eek:

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 :thumbsup: )
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 :mrgreen:

Getz 06-14-2006 08:01 PM

Re: back from Infectious Disease Specialist
Wow, sounds like a caring doc! I hope the test results give a clue as to what is wrong.

5tinytreasures 06-14-2006 08:31 PM

Re: back from Infectious Disease Specialist
I'm so glad she is taking the time to look at everything instead of just his immune system. I hope she find the answers soon :hugs:

masonite 06-14-2006 09:09 PM

Re: back from Infectious Disease Specialist
It sounds like you've got some awesome Dr's on your side--that's great!

My son was/is going through a similar, but not too similar situation. Did the do the sweat chloride test for CF? My son has had that stupid test done 4 times...

I just read your other post, and although your childs health problems are a lot different than my sons, it seems like there are a lot of similarities.

I really hope that someone can help you find the cause for all of this. We're still searching with my son!

Good luck mama!

MamaJo 06-15-2006 01:40 AM

Re: back from Infectious Disease Specialist
Praying for you - hope these docs can find some answers soon!

zonapellucida 06-15-2006 08:44 AM

Re: back from Infectious Disease Specialist
I hope you get some answers soon! ((((hugs)))

geckoed 06-15-2006 11:15 AM

Re: back from Infectious Disease Specialist
Annalee... yes they did the sweat test, his was a 5 so about as negative for CF as you can get. But she said they'll probably repeat it eventually unless they come up with another explanation. The thing is he's a fat baby, not small like you expect with CF. Still, she seems to think CF would explain a LOT so she can't bring herself to rule it out LOL.

Loch still gets probably 80% of his calories (more?) from breastmilk. She said thats good, b/c breatmilk boosts the immune system. But also bad because it affects their tests of immune function.

sesa70 06-15-2006 02:52 PM

Re: back from Infectious Disease Specialist
So glad you had your appt today and she spent alot of time with you today! How do you feel after the appt? Do you feel satisfied with her ideas?

Just a question, isnt cystic fibrosis genetic? From my understanding its autosomal recessive, just like my dd's condition. I believe they test the top common mutations (its some outrageous number like 97) for a positive or for a carrier, but couldnt it be possible that he has an unidentified or uncommon mutation? Such is the case with our girl, so of course I had to ask :)

SO I guess the important thing is how YOU feel after the appt. Did she tell you anything new or have any good ideas for you?

masonite 06-15-2006 04:10 PM

Re: back from Infectious Disease Specialist
Hmmm. Hopefully they will retest--we've met with a CF specialist a few times. I guess the chances of "error" on the sweat chloride test are really high if it is done on a "baby".

The specialist (I'm sure you already know all of this, but I'm just trying to share my knowledge, having been through all of this before), said that CF can cause different "symptoms" in different patients. Meaning that some people would deal with a lot of lung/resp. problems, some with a lot of bowel problems, and some with FTT. (My son has severe FTT and bowel problems), which is why he's now been tested for it three times!

It sounds like you've got some great doctors on your side working with you. I know how frustrating it can be to NOT know what is wrong with your child. They still don't know what is wrong with Camden.

I really hope all of these Dr's can figure something out with your poor sweetie. It's much easier to treat the actual "problem" than just the effects. :hugs:

geckoed 06-17-2006 06:28 PM

Re: back from Infectious Disease Specialist
I felt like she had good ideas. I agreed it was time to draw blood (aww :( ) and try to get to the root of things. I wanted her to say something like "we think its XYZ but it might be ABC so we'll run this test and let you know" but instead there were several possibilities. She was pretty hung up on it being CF (which is genetic, and recessive so it takes 2 carries) but yes she did say there are uncommon variants they can'r readily test for. Of course there are also over 1200 primary immune deficiencies so some of those are also really hard to identify.

We'll see the immunologist on Monday, they blocked off 3 hours for us and said we could have more time if we needed it! And in the afternoon the ortho will see us about the short leg and maybe short arm and we'll bring up the wide-open soft spot

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