Re: Re: Ursula/Dr. Filipovich

[Guest guest]

, we see doctor's at the bone marrow failure clinic in Cinci and see

doctors that work with Dr. F-- we also know many families who know Dr. F and

I agree-- none of the transplant doctors at CCHMC tske transplant lightly.

We were told last December that there was a possibility that our son,

ph, may need a transplant. We're still here b/c they don;t take that

move lightly.

pattie

On 12/29/07, <kristinsmith@...> wrote:

>

>

> >

> > 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

>

>

>

--

Peace be with you,

Pattie

You are not a saint because you keep the rules and are blameless; you are a

saint if you live in the real world, going out and loving the real people

God has put into your life. ~Mother