Re: Something Interesting

[Guest guest]

Wow, that poor baby and mom! What a crazy story. For what it's worth, I too have

encountered crazy stuff in regards to clubfoot treatment, and in our dr.'s

office! There is one dr. in the practice who still believes in the old-fashioned

way of dealing with cf and isn't convinced that Ponseti method actually works

(ummm, just look at the cast studies, but whatever). Anyway, he did a cast on my

dd and afterward her foot was very stiff and difficult for our dr. to work with

(long story, she had a hard time with one cast so I removed it and went in the

next day to have it re-applied, well her dr. wasn't in that day so she saw this

other dr., I had no clue about the specifics of the Ponseti method or the

possibility that this dr. didn't use it, but after talking to him I figured out

he didn't, but I still didn't get the significance of this and went against my

gut and let him do the cast), anyway, this mom was seeing this dr. and she was

telling me how he told her at her first visit that her dd would need about 8

casts and then surgery. I told her that was insane and that they couldn't tell

if the baby would need surgery before even seeing how it responded to casting

and that it shouldn't take 8 casts either. Well, I convinced her that she should

get a second opinion and told her the three dr.s in the practice that I

personally KNOW follow the Ponseti method. Saw her at my dd's last appt, she was

in the waiting room at the same time, and she had gotten a 2nd opinion with my

dr. and he was going to put on her last cast, then do the tenotomy and NO

SURGERY was needed. I was so excited for her. I just KNEW if she saw a dr. who

knew how to do the Ponseti method that she'd have good results! Anyway, she was

pretty excited to see me too. I always wonder what kind of trouble I'm stirring

up though by saying stuff about one dr right in the waiting room where his

patients might be sitting. I've mentioned this to my dr. and of course he won't

say anything about the other dr, but he does tell me I am free to say whatever I

want, as I am my own person But he just says not to tell him about it, lol!

Anyway, get her to another dr.!!!! And good for you for passing on the word!

Marcia

Something Interesting

Awhile back, when I first began to post, I mentioned a young mother

that was going to Children's Hospital at the same time as me, with a

little girl the same age as Hayden who was having all the same issues

as him; bad skin, large baby, two Botox treatments, screaming at every

appointment, thrown into the boots and bar when she wasn't ready, etc.

I had given her my phone number at one point because she was

originally coming from fairly far away for treatment and had to fly

in, stay several days, fly home and I thought she might like to hang

out some time. The last I had heard of her was one of my last

appointments at Children's and I was told that they had sent her baby

to OR to be put under to see if they could get a better casting while

she was relaxed. (Apparently that didn't work any better.)

Well, she called me last night and you won't believe what has gone on!

Her daughter has endured further Botox injections, more slipping

casts, continual skin problems and more than enough attitude from the

Orthos there.

In addition to that, at the beginning of December Dr. Alvarez finally

admitted defeat with the Botox and gave the baby tenotomies under

general anaesthesia (??) and put pins in them (again, ??). To make

matters worse, when they did this, they put the casts on too tight and

had to start again. This child has been under general at least three

times from what I can gather, which in itself is a concern to me.

They've now told her that her baby won't be able to go into the boots

and bar and will instead be fitted for an AFO on Thursday.

She said that she had enquired about me and been told that I was going

to Richmond (not right, it's New Westminster, but anyway). She was in

the middle of a move and didn't uncover my phone number until

recently, so she called to find out what I had been doing and let me

tell you, I gave her the most glowing report of Dr. Pirani I could. I

have invited her to join me at our appointment next Tuesday and she

has agreed to come. I told her that no matter what, she MUST come

with me and see how things are done at Royal Columbian.

What has me completely steamed and really scratching my head is this:

Once Dr. Alvarez realized she had to do the tenotomies, the child was

now out of her research because she is trying to prove the Botox works

and it didn't. Why for the love of all, did she not refer the baby

elsewhere? Or more specifically, Dr. Pirani? Or for God's sake, at

least consult with him? Isn't that what doctors do? I know for a

fact that this little girl also has Complex Clubfoot and Dr. Alvarez

does not even seem to know what that is. I am just hoping to get this

girl in with me at our appointment and I know that Dr. Pirani will

take the time to explain things to her and I know that she will want

to switch that day!

I'll let you know how it all pans out! I'm seriously tempted to head

up to Children's tomorrow and just thumb my nose at everyone there!

It actually gives me a little twinge of satisfaction that they had to

drop us from their research criteria too because we left! Hmph!