Finally.....a 2nd opinion!!!!!!!!!!!!!!!!!!!

[Guest guest]

In a message dated 10/27/2004 10:32:21 PM Eastern Daylight Time,

dandmpohla@... writes:

I cannot even explain how much better I feel tonight.....like a HUGE

burden has been lifted off me. I feel like all my concerns and

instincts telling me that something was missing, wrong, or concerning

were rightly justified and validated. I mostly just feel like someone

is finally REALLY trying to help my son and that is all I want in

this world, whatever the treatment may be. I will keep you posted!

I am sooo happy for you and your son! It is good to hear some good news for

a change. Please do keep us posted. I may need to call the IDF tom. hmm

Janet, mom to Brittany, CVID, age 13

[Guest guest]

I have been having a lot of internal conflict in trying to believe

what the immuno tells me when everything I have read here and on the

net and talked about with people at the IDF, etc. and how much I see

my son's health declining makes me feel in my gut that something is

being missed and more could be being done. I had to take

into the ped for yet another infection on Mon and he innocently asked

me what was going on on the immuno's end of things. He really wanted

to know, and much as I hate talking poorly of others, I was honest.

After not hearing back for her for days for the 3rd time (4-8 days

each time), I was at my wit's end. How can you work with someone who

cannot even make time to talk to you and cannot even be sincere when

they apologize for taking so long to call back? So, I poured my

heart out to him and even cried out of pure frustration and mentioned

at some point that I had a name and number of another immuno that the

IDF gave me and he looked at me and said he would not disagree with

me if I wanted to seek a second opinion. He was frustrated as well.

So, I did it. I tok the initiative and got an appt within 2 days

from the call. We went this morning and.....

IT WAS FABULOUS!!!!!!!!!!! The first time I have felt taken seriously

and REALLY listened to since this whole immuno thing began. And,

everything that I have been concerned about, been questioning from

the old immuno, and things that I was not sure I agreed with were all

brought up and addressed and my fears, concerns and reservations were

ALL justified. This new immuno is in a small private practice and has

been involved with IDF for years now, so I did not feel like another

head of cattle in the herd. He has written and published papers and

really knows his stuff. He thinks that has likely been

misdiagnosed and probably has CVID and will more than likely need

IVIG. He thought ' numbers were terrible, which is what I had

always wondered and questioned. He was very concerned with the titer

levels and the IgG and IgM levels as well. He wanted to do 1 final

test before making a final decision.....the same test the old immuno

wated us to wait several more weeks to do. He was able to get the

pneumovac vaccine today, which we would have waited another 2.5 weeks

to get it at the old clinic and we will have the retest in 3 wks

instead of 4 like the old immuno said. This means we will have

answers before Thanksgiving instead of not finding out until almost

Christmas. The one thing I liked the most about him is that he was

concerned enough with the infection rate he has right now instead of

waiting until he gets something " life threatening " like the other

immuno is waiting for. I have been there

(life threatening) twice with and NEVER want to go there

again. He thinks it is better to treat early and not wait as it is

much harder to try to get the whole system under control the longer

it is allowed to go like it is now. If does start IVIG, he

told us he would be able to start us with a home health co to do it

in our home instead of being stuck in an exam room in an infusion

clinic for 6-8 hrs per visit with a toddler. This would not be an

option at our old clinic.

He decided to do a nasal swab since was still feverish and

junky when we went and discovered has another sinus

infection, so he is now on another abx. He also wants to help the ped

to treat better by giving him a protocol to follow when he

is ill. The ped has been frustrated at the lack of help from the

other immuno.

I cannot even explain how much better I feel tonight.....like a HUGE

burden has been lifted off me. I feel like all my concerns and

instincts telling me that something was missing, wrong, or concerning

were rightly justified and validated. I mostly just feel like someone

is finally REALLY trying to help my son and that is all I want in

this world, whatever the treatment may be. I will keep you posted!

Melody, mom to 23 mo old , THI (?), GERD, DGE, RAD, MSPI,

Dumping Syndrome

[Guest guest]

from Dale, Mom to Katy, CVID, age 20

I know what that feels like!!! Been there! I am SOOOOO happy for you.

Now, you can be the Mom! Praise the Lord for good doctors -- they ARE

out there!

In His service,

Dale

pohlarbear13 wrote:

>IT WAS FABULOUS!!!!!!!!!!! The first time I have felt taken seriously

>and REALLY listened to since this whole immuno thing began.

>

>The one thing I liked the most about him is that he was

>concerned enough with the infection rate he has right now instead of

>waiting until he gets something " life threatening " like the other

>immuno is waiting for.

>

>e decided to do a nasal swab since was still feverish and

>junky when we went and discovered has another sinus

>infection, so he is now on another abx. He also wants to help the ped

>to treat better by giving him a protocol to follow when he

>is ill. The ped has been frustrated at the lack of help from the

>other immuno.

>

>I cannot even explain how much better I feel tonight.....like a HUGE

>burden

>

>

>

>

>

[Guest guest]

Dale -

I'm wondering if I can possibly talk to you off list or even on the

phone if possible.

Dayna

Mom to 3 PID kiddos