s Re: Ursula/Dr. Filipovich

[Guest guest]

- I'm speaking from personal experience regarding Macey. My opinions

are based on the last 10 years of dealing with BMT workups for Macey, crossing

the country dealing with different opinions regarding transplanting Macey and

having her so readily tell us that yes, it could be done and would have a

successful outcome.

Ursula

s Re: Ursula/Dr. Filipovich

>

> Would I be weird if I said it actually all made sense? Has Dr.

Filipovich

> mentioned BMT? I will say that the only thing that cautions me

about her is

> how readily she will put a milder PID patient through transplant.

In 2005 I

> spoke with her at length at a conference about her BMT protocol for

CVID and

> she quoted success rates that weren't " successful " enough for us.

Most of

> her patients have one to two autoimmune components that are fixed

with the

> BMT and it helps with any NK or Tcell problems but she still has yet to

> publish high numbers of patients coming off IVIG at least a year out of

> transplant and most still end up with daily PID meds and at least

treatment

> for B-cell function that doesn't reconstitute after BMT. She's not

one of

> the more realistic transplant doctors in my opinion. But I've not seen

> anything published by her lately so I hope she's having better

success with

> medical treatments and her BMT protocol. Let us know if she's on to

> anything new or groundbreaking.

>

Ursula,

I don't have much time to read email these days, but someone brought

your note to my attention. I have to say that I take offense with you

saying that Dr. Filipovich is not a " realistic transplant doctor " and

that she " readily " recommends transplant. I have not spoken to anyone

who has experienced this with their child. I would understand your

comments if this had been your experience with your child, but it

appears that she was speaking to you in an abstract manner. All

children are different and generalizations can be difficult.

When we first went to Cincinnati we were told that they did not

believe that our son Conner was a candidate for transplant, even

though other doctors had mentioned it. Obviously this changed when

they discovered that Conner had NEMO, in which bone marrow transplant

is the current internationally recommended treatment.

Before we officially discussed transplant with Filipovich, we went to

the NIH and asked their opinion. The immunology/infectious disease

team told us in no uncertain terms that Dr. Filipovich was their first

choice for immune deficiency transplants in the world. We expressed

that we would be willing to go anywhere for the best success rates,

and they again told us that would be with Filipovich. When we finally

had our official transplant meeting with her, she explained that a

bone marrow transplant is a horrible treatment for terrible diseases.

She made it very clear that there were no guarantees that Conner

would survive transplant and there were no guarantees that he would

come out with full immune function (most especially b-cell function).

She explained that the only reason they were transplanting NEMO boys

was that they did not believe they would survive without one, but she

also told us that we had to be in agreement with moving forward with

transplant. She wanted us to be fairly certain that we wanted to do

this before she would agree to begin the process.

We have been on the transplant unit, inpatient and outpatient, at

Cincinnati Children's since July. I have never met a transplant

patient of hers that had one of the milder PID's. After getting to

know many of her patients, I would say that in my experience,

transplant is absolutely not recommended lightly by Filipovich. My

daughter Kelsey is a NEMO carrier and has some other immune problems.

I have specifically asked if transplant would ever be recommended for

her and was told that from what they know right now, she is not a

candidate.

As for why Dr. Filipovich isn't publishing anything. She is out of

the country every few weeks helping to set up immunology programs in

other parts of the world. It doesn't surprise me that she is not

spending time getting her work published. The fact that the NIH was

so adamant about her abilities was enough for us to trust her. We

knew there weren't any guarantees.

Another parent from this group mentioned to me in private that they

would be concerned about seeing Dr. Filipovich due to " pushing "

transplant. I just wanted to make sure that other families know that

we have not met anyone who has experienced this with her, she is a

truly amazing doctor and we adore her.

I just wanted to share what we have personally experienced and

witnessed with individual patients and this particular physician.

Mom to Hayden, Evan, Conner (NEMO - transplanted 8/17/07) and Kelsey

www.caringbridge.org/visit/smithkids

[Guest guest]

> - I'm speaking from personal experience regarding Macey. My

opinions are based on the last 10 years of dealing with BMT workups

for Macey, crossing the country dealing with different opinions

regarding transplanting Macey and having her so readily tell us that

yes, it could be done and would have a successful outcome.

>

Ursula,

I was not aware that Macey ever had a consultation with Dr. Filipovich.

You have made highly critical remarks regarding a renowned

immunologist in an online support group, I'm just trying to figure out

where you're coming from. You've only mentioned having a conversation

with her at a conference.

I'm saying that I feel it's inappropriate to make unfavorable blanket

statements about a physician in a forum like this. It's fine to share

your personal experience, but I don't believe it is your place to say

that she is an " unrealistic transplant physician " and insinuate that

she is casually recommending transplant, when the National Institutes

of Health says she is THE doctor to consult for transplant, based on

her protocol and outcomes. It is my concern that other parents will

see your comments as a medical opinion, due to your occupation,

involvement with the IDF, and ownership of this group. And I'm mostly

frustrated that families may no longer consider consulting with her

based on your comments.

I'm sure it's obvious that I am feeling very defensive, but my husband

and I are extremely grateful that members of this group helped us find

our way to Cincinnati, we don't believe that Conner would have been

diagnosed otherwise. He would have remained diagnosed with CVID and

would have likely succumbed to a lethal infection. Thanks to Drs.

Filipovich and Bleesing, his future is looking brighter.