Re: dueling drs

January 8, 2008

Its tough when they don't agree but based on what you say it doesn't sound

like she's ready to trial off. If immune function was returning to normal

then you would not be seeing so many infections imo. Are you trialing off

just because of the drama involved in IVIG needle sticks? Is switching to

SCIG an option? We had major drama on IVIG but over the last 7 weeks since

starting sub-q things have gotten really easy and she no longer freaks out

about the needle (using the minimeds) and were up in running within 5

minutes and that includes her " prep time " where she mentally prepares

herself for each stick. I can't believe I didn't insist on SCIG sooner, way

less traumatic and I'm told her IgG levels should actually maintain at a

higher level now which means less sick time.

dueling drs

>I feel somewhat caught up between two great drs that I both like and

> respect. One, our pulmo, has been with us over five yrs, and as far as

> Im concerned, saved my kids on more than one occasion......when local

> drs were blowing us off, she took us seriously, found the root of most

> of the problems, and set about aggressively " fixing " them to the best

> of her ability. This dr I love,trust, and consider part of our family.

> So do my kids.

> The other, infectious disease, we've had nearly two yrs. He's a great

> guy,

January 8, 2008

it sounds like you are tired and really want a break from all of this.

So why is it you are doing IVIg rather than SCIg. I remember there was a reason

something to do with wrong doses etc? My son was 10 when we trial him off after

being on since he was 3. It failed in his case but he had been on long enough to

be pretty stable. I would be concerned personally for a trial off as your pulmo

said for a child who had not been on it continuously for several years. My

experience in watching these kids is that it takes several years to get them

stable with IVIg and then once they are not having consistent infections then

you are considering them stable. My son failed because his titers came back very

low and that is really if I am remembering correctly the major reason to take

them off and check. Many of the other test can be run with them on IVIg or Sub Q

at a trough time. I am wondering if the ID is reallly looking at the kids

individually or is he

looking at the age 10 where many of the kids are trialed off. Your daughter

will get over it but maybe she can go to Subq again and have a successful time

this time. Under your circumstances where there are so many kids on therapy I

wonder if you could get some extra nursing help from the insurance to take some

stress off of you. YOU are the one that will deal with the infections all summer

when the kids get sick. I would be interested in knowing how many kids go on to

come off of the Ig and how many are put back on I wonder if IDF should track

that #. I think it would be interesting . Again I think the important thing is

that the kid is stable clinically prior to taking them off. We did not tell our

son until the month before just in case. He was on antibiotics the entire time

for infections so we really got the taste of what it is like again. But.... I do

know that some kids do wean off and do fine so this is just my experience.

BARBIE

dueling drs

I feel somewhat caught up between two great drs that I both like and

respect. One, our pulmo, has been with us over five yrs, and as far as

Im concerned, saved my kids on more than one occasion.... ..when local

drs were blowing us off, she took us seriously, found the root of most

of the problems, and set about aggressively " fixing " them to the best

of her ability. This dr I love,trust, and consider part of our family.

So do my kids.

The other, infectious disease, we've had nearly two yrs. He's a great

guy, very personable, good with my kids and seems very knowledgable.

Pulmo referred us specifically to him to treat the kids CVID and to

manage the IVIG. He has done well for us thus far, and I trust him.

He (ID) had planned to trial the kids off IVIG last summer, to see how

they did and to check their numbers in the fall and see how they held.

That did not work out, for several reasons, and we all agreed to keep

up one more yr, and then he said, so long as they were stable,

medically, we'd give it a go this summer. My ten yr old daughter has

been counting down infusions until the break. At last IVIG, he told

her, so long as she didnt get a bunch of bacterial infections by

April, he would make April her last infusion for the summer. She's

been thrilled, and lookiing forward to this.

Today we saw our pulmo. (for the boys, the girls go thursday). During

the appt, I mentioned this, that we were planning to trial two of the

kids off over the summer, and she whipped her head around and very

matter of factly disagreed with that plan. Citing repeated abx needed,

along with a couple pred bursts, she says she is going to " have a

talk " with the ID guy, bc one of the kids is barely where he needs to

be, and its just now getting better(he began IVIG last Feb) and she

isnt going to screw him up now. And she still has no idea how much

problem we've had with Savannah's asthma, due to repeated viruses this

winter. Im a little nervous when I take her in on thursday to listen

to this tirade again(not that she is mad at ME, she just doesnt agree,

and she doesnt agree VERY LOUDLY). Im nearly certain she'll say NO,

after Savannah has already been told yes. And that is going to stink.

Its hard to decide which side of the fence to impale myself on. Last

yr, we were considering a port for Savannah(bc she wanted it, and has

some trouble with getting lines in, and has anxiety issues). ID guy

wanted to wait, and pulmo pitched a fit(bc she came to infusion a few

times and saw Savannah in tears after several failed attempts). And

she then tore into him, fighting for the port on my daughters

behalf,and eventually, we decided against it--bc ID said, if we could

just wait until we knew if she passed/failed the trial off this

summer, he would be ok with it.

I am beginning to feel like Im in the middle, without intending to do

that. And I feel like somehow, I keep ending up looking like Im

running behind ID's back to tattle to pulmo,which isnt the case, but I

feel it looks that way. And I feel like I need to choose. And thats

hard. I can understand both points of view, I understand both the drs

and their reasons. Im not sure what to do.

valarie

mom to three with CVID

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January 8, 2008

As far as our experience with Ig levels on SCIg versus IVIg . Lucas was usually

between 8-1100 on IVIg but if he got under 800 he was sick. Now he is around

1100-1300 on SCIg , he is still having some infections but overall I think he is

better.

BARBIE

dueling drs

>I feel somewhat caught up between two great drs that I both like and

> respect. One, our pulmo, has been with us over five yrs, and as far as

> Im concerned, saved my kids on more than one occasion.... ..when local

> drs were blowing us off, she took us seriously, found the root of most

> of the problems, and set about aggressively " fixing " them to the best

> of her ability. This dr I love,trust, and consider part of our family.

> So do my kids.

> The other, infectious disease, we've had nearly two yrs. He's a great

> guy,

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January 8, 2008

Valarie....

This is what happens when you get several Drs/ opinions about the same thing.

One speaks more passionatly for their defense as well as looking good to

themselves 7patting them selves on the back to sayt, " Yeah, my wa was more

convincing & she choose to do what I say " .

I have been there & done that with Blake's health care. We have a Pulmo/

Immuno/ Hem/Onc/Endo/psyc and Pediatrician.

When Blake is sick he is in really bad shape. He usually winds up in the

hospital either here in our hometown or the one 2 hrs. away. With Blake it is

not amatter of is it the port/is it sinus/is it stomach/is the pain from his

dense bones. Since Blake had a line in him since he was knee high to a grass

hopper. It was ALWAYS the port/broviac/PICC line that was looked at first!!!

Well, we got wise. We let the Pediatrician be our Quarterback. If Blake has

an issue, we take it to her first. If she had no answer right away, she would

contact which ever dr. that specalizes in what the problem is. Nine times out of

ten, she had her answer before we left her office. This enabled us to treat

Blake at home & stay out of the germy environment. The one thing when he had

his lines , that was done regardless of what was going on was to get his CBC

done & order cultures of his line & blood!!!

Right now Blake is line free. he still is unable to take oral antibiotics, so

an IV is placed for 3 days of antibiotics & he STILL has blood cultues done when

an infection sets in. He does his IgG Therapy SC at home, but because of his

infection rate they do blood cultures.

What I would do, is gather up all the info from eachg Dr. & go to the Ped. &

get their opinion on eah child. THe Ped is the one who knows them best. It may

be that they did not snub you, bu that they just did NOT KNOW what to do. It

actually took us going to DUKE for our 6th opinion on Blake. That is how we

wound up waiting 5 yrs. before Blake was ever treated proberly & his health

declined to teh point of almost non-existance except to live in a hospital.

Since you do have 3 children on IVIG, I would take the Immuno's opinion, The

Pulmo's. get teh pro's and con's of what is each persons thoughts take that to

your ped. If the ped won't help I would find one who WILL & let them settle it &

keep you out of the middle.

Right now, these 2 Dr's. are aware of YOUR delliema, so they are the ones who

are " playing " one another & You!!!

You are mom, what DO YOU think & WANT to do? Tell each of them then put your

foot down & let them duke it out!!!!

You hired them, they HAD to show you that the can advocate for YOU & You are

the mother!!!

You are the only one who can speak on behalf of each of your " blessings " they

are looking to you for the answers.!!

Remeber, Have the Faith of the tiny Mustard See & You CAN move mountains!!!!

JUlie

Mom to Blake 16, SCID with Complete T-Cell Dysfunction- SCIG for almost a

yr(once a week), Asperger's/ADHD/ODD/OCD Sensory Intergrated Motor Skills

Delays, Central Processing Deficiet,Genetic Prothrombin Deffect with G-A

mutaiton and MTHRF mutation,

Loves to read & is telling us 9th grade English Lit. is TOO easy!!!

http://www3.caringbridge.org/sc/blakester

The Greatest Adventure of MY Lifetime!!!!!!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

osdbmom <osdbmom@...> wrote:

I feel somewhat caught up between two great drs that I both like and

respect. One, our pulmo, has been with us over five yrs, and as far as

Im concerned, saved my kids on more than one occasion......when local