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[Guest guest]

What a JERK!! You do need a new ped, this guy wouldn't admit it to

you even if he did see progress. My baby Katelyn just got a star

band this week so I know what you are going through with it. Good

luck!

>

>

> Hi everyone!

>

> I am new to the message board...for the past couple of weeks I have

> been reading posts and learning so much. However, this is the

first

> time I have posted something. My son Max has a dx of brachy

> (severe). He is now 9 1/2 months old. He has been in the DOC band

> for four weeks. Many of the posts I have read stated that peds are

> not very supportive...in 25 years Max is the first patient our ped

> has had in a band. I had to insist he give us a referral. Today I

> took Max in for his nine month check up and the ped laughed and

> said " I see no change at all. " He really shot me down. This was

> after I had explained that we were following everything to a tee in

> hopes of really helping our son. My husband and I do see

> improvement. His negativity should not have

> surprised me but, to be honest, it felt like a slap in the face.

> Going through this has been so difficult...there are days when I

> worry that we will not see the progress that we are hoping for.

I'm

> angry with the ped for telling us to " wait it out. " Max should

have

> been in his band months ago...truth is, I'm angry at myself too. I

> should have questioned our ped months earlier. Does anyone on the

> board have a success story for a dx of brachy (severe) with the

baby

> banded around 8 months of age??

>

> I want all of you to know that I appreciate being able to read the

> message board...I don't feel so alone in all of this. Thank you

for

> your honesty and encouragement during a time that has been truly

> difficult.

>

> I am going to change peds. Our ped doesn't like that I insisted on

a

> referral and didn't take his advice and wait it out. I would like

to

> find a ped who is an advocate of the band and who supports our

> decision.

>

> My husband and I are Max's only voice. I refuse to look back when

he

> is two or three and know that we could have helped him. He is too

> precious to us. I respect all of you who are advocates for your

> children. They're the best, huh?!

>

> Kathleen, mom to Max (DOC band 4 weeks and doing great!)