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RE: Re: earlobe problem

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It took me 7 hours one day and another 3 hours the next on the phone to get one

of my meds taken care of. I was FURIOUS! they just say Write an appeal! If I go

off of it I end up in the ER. So it would cost them more in the long run. It was

not United Health Care was it?

From: cerdaclan@...

Date: Tue, 14 Feb 2012 15:43:37 +0000

Subject: Re: earlobe problem

So mstoiditis can come from a sinus infection? When she was in last week,

the doc mentioned that she had eustachian tube " congestion " , but did not have an

ear infection. My guess is that you cannot see an inner ear infection like you

can a middle ear infection.

We asked our immuno about a loading dose. The one other time they went off and

back on immunoglobin, they did a loading dose. But our new immuno does not

believe in loading doses. At this point, our insurance has stressed out our

immunologist so badly, I am afraid to add anything else to the mix. I got and

email at the end of last week that our insurance is demanding too much of their

time and they cannot continue with it. You cannot believe how horrific our

pharmacy coverage has been. They have denied every single prescription the doc

wrote for....antibiotics, tamiflu etc....because it is " recommended to be used

no more than once a year by the manufacturer " and they have to go by what the

manufacturer says. She has had to appeal every single thing she writes for,

then they keep losing the paperwork. We are on the homestretch now as all the

approvals have finally been completed, but it has definately caused problems

that we just don't need.

Terri

Mom and daughters with CID

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> Terri,She could have an infection coming from the sinuses even if not in the

ear itself. I would check into it. Also I am surprised they are not starting

with a round of IV Gamma prior to the sub Q. It is usual protocol to get the

body going before sub Q. I think I would consider asking so that she can bump

these infections. Barbie Lucas 16 CVID

> From: cerdaclan@...

> Date: Tue, 14 Feb 2012 15:25:55 +0000

> Subject: earlobe problem

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> Has anyone dealt with a child having a swollen and painful

earlobe......yes earlobe? Maggie has had a sinus infection for about 12 weeks

now. She has had 2 rounds of tamiflu and 2 rounds of antibiotics without

clearing. They are trying one more antibiotic today, then it is off to the ENT

or ID if it does not work. She is not on immunuglobin....she has been approved

FINALLY and they are shipping out tomorrow, but it will be subq and take a while

to build up. Just wondering if anyone has dealt with this. She has never had

mastoiditis and, when she was at the doc, she had no ear infection. However,

she is tender on her mastoid bone, but no swelling there. She has no signs of

an ear infection.

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> Terri

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> Mom and daughters with CID

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