Hello all,

I am sorry to hear about Zach's kidney stones as well. I hear that they are
extremely painful and our kids suffer enough as it is.

Johnny (my husband) and Lee will be going to the NIH this week. They leave in
the morning and will return on Friday. This will be his 8 week visit so it will
be his first redosing of the canakinumab. I'm curious to see how his numbers
are since he is at the end of the dosing period. He seems to be doing well...no
headaches or anything. So, we'll keep our fingers crossed that this will
continue to work so well.

Good luck to all,
Marie Parker


--- In nomidsyndrome@yahoogroups.com, Jan DaPrato <jand71054@...> wrote:
>
> Hello everyone,
>  
> I hope everyone had a nice Easter.  I have been reading all the e-mails but
have been dealing with Zach battling kidney stones.  Poor guy, he finally passed
it on Wednesday.  Unfortunately on the CT scan he has 5-6 more plus possibly a
cyst.
>  
> We are going to the NIH next week on the 26th.  Colin and Debra I believe you
were at the Children's Inn one of the times we were there and Tilly was having a
rough time.  We met the other Colin and Lisa with their 3 children.  I really
enjoyed their company. Looking forward to meeting you both as well as Tilly.
>  
> Are any other families going to the NIH that week?  It is nice to know ahead
of time so we can be looking out for each other.
>  
> Take Care,
> Jan - Zach's mom
>
> --- On Thu, 4/9/09, COLIN BAILEY <colinbailey828@...> wrote:
>
> From: COLIN BAILEY <colinbailey828@...>
> Subject: Re: [nomidsyndrome] Hi everyone & a very happy Easter to you all...
> To: nomidsyndrome@yahoogroups.com
> Date: Thursday, April 9, 2009, 3:43 AM
>
>
>
>
>
>
>
>
>
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>
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> Happy Easter to you all!
>  
> We will be at the NIH from 25th April for a while.
>  
> Kind regards
>
> Colin, Debra, Oliver & Tilly
>
> --- On Wed, 8/4/09, aislingmcn <aislingmcn@gmail. com> wrote:
>
> From: aislingmcn <aislingmcn@gmail. com>
> Subject: [nomidsyndrome] Hi everyone & a very happy Easter to you all...
> To: nomidsyndrome@ yahoogroups. com
> Date: Wednesday, 8 April, 2009, 11:38 PM
>
>
>
>
> Hi all-
> I have been reading but haven't had much time -things are quite good with Jack
at present-fingers crossed it stays like this!!
> He has never been home for Easter yet in four years so am hoping 4th time
lucky!! He has been really good for the last two months- a very long time for
Jack.
> I hope things improve for you Daniela and I will e-mail you back privately and
I'm sorry it has taken me so long-things seem to have improved a bit for you at
last but still he is having break through symptoms-would your docs now consider
a little prednesol (steroid)in conjunction with the anakinra??
> Bekky how are you? I am sorry to hear of your persistent headaches and good
luck with your study in the summer.
> Great news Karen that Seth is doing so well on the new drug-long may it last!!
> Kate good to "see" you...
> Michelle hello and how are you and yours??
> Hello to everybody else too and hope you and your children are well and hope
you all have a very Happy Easter-hope the Easter bunny visits!!
> Lots of love Aisling xxx
>