what to expect with Dr. in Boston

[Guest guest]

First of all, thanks to everyone who keeps me sane while dealing with my son's

issues and helps me to better understand it. I got a call today and Isaac has an

appt to see Dr. in Boston March 19th. He will also be having his MRI there

the same morning. I am already extremely pleased that they got him in so fast.

Does anyone have any tips on things I should write down to tell the doc before I

go...I'm not really sure what he is expecting, for instance times of accidents,

leg pain etc.

Anyone who has info on him (thanks to those who already recommended him) would

be very helpful.

I will keep you all updated on what happens.

Thanks,

From: Nadeau <elisaacdyahoo (DOT) com>

Subject: Familiar with Boston Children's?

To: tetheredspinalcord@ yahoogroups. com

Date: Monday, February 9, 2009, 3:22 PM

hi everyone,

I am so frustrated with Isaac's NS. We live in Northern N.Y. so we have been

going to Vermont Children's Hospital in Burlington. My son has had the same Ns

for 2 years and we have never met her. She will schedule tests to be done for

him and then will have her receptionist call us with the results. I have called

twice in the last two weeks to try and get through to them that Isaac has had

leg pain and is now having bowel accidents even while just sitting on the couch.

Do you know what they said?! " Wait it out for a couple months and then if he is

still having problems then go and either see his pediatrition or urologist. "

What the hell is that. He has had major growth spurts this year and I am really

thinking that maybe his cord has retethered.

Anyway, I am passing right over the NS head and going to my pediatrition to get

a referral for an MRI and to see a doctor at Children's Hospital Boston.

Does anyone know the doctors name and can you tell me any pos or neg feedback

from your experience there.

Sorry for the long post, I'm just frustrated.

Thanks,

[Guest guest]

Hi guys,

sorry I didn't get back to you right away. It has been super busy since we got

back from Boston.

, I did mention to Dr. that we talk via internet. He thought that was

very nice.

Ok, so his nerves are very stretched and tight. He has already started to lose

feeling in both his feet which came to us as a surprise. He definately has to

have surgery again. It's scheduled for April 28th. So far, Isaac has been taking

very well. I don't think he will actually start to get nervous until it gets

closer. I will let you know how it goes.

Thanks for all the prayers and good information.

Subject: Re: what to expect with Dr. in Boston

To: tetheredspinalcord

Date: Monday, March 23, 2009, 1:14 PM

Has anyone heard from ? I know her son had an appointment at Children's

in Boston on the 19th. Wondering how everything went. Hoping all is well. Happy

Spring. --

>

> From: Nadeau <elisaacdyahoo (DOT) com>

> Subject: Familiar with Boston Children's?

> To: tetheredspinalcord@ yahoogroups. com

> Date: Monday, February 9, 2009, 3:22 PM

>

> hi everyone,

> I am so frustrated with Isaac's NS. We live in Northern N.Y. so we have been

going to Vermont Children's Hospital in Burlington. My son has had the same Ns

for 2 years and we have never met her. She will schedule tests to be done for

him and then will have her receptionist call us with the results.. I have called

twice in the last two weeks to try and get through to them that Isaac has had

leg pain and is now having bowel accidents even while just sitting on the couch.

Do you know what they said?! " Wait it out for a couple months and then if he is

still having problems then go and either see his pediatrition or urologist. "

> What the hell is that. He has had major growth spurts this year and I am

really thinking that maybe his cord has retethered.

> Anyway, I am passing right over the NS head and going to my pediatrition to

get a referral for an MRI and to see a doctor at Children's Hospital Boston.

> Does anyone know the doctors name and can you tell me any pos or neg feedback

from your experience there.

> Sorry for the long post, I'm just frustrated.

> Thanks,

>

>