Hi Rachel,
What has the tempreture been this week in your area, Denis always fits
more when it is hot, There is nothing more frustrating than watching
your child having hundreds of sxs a day.
One of the peads who worked with Den when he was little is (as far as
I know) at the Miami Childrens Hospital, I wonder if it would be
worthwhile trying to contact him. His name is Steven Malone and he is
from Brisbane Qld, he was just lovely and so good to me.
It took use a long time to get the MPEI dx, originally Den was dx with
West Syndrome/Infantile Spasms, and our neuro referred us on to an
epileptologist for a second opinion. Our neuro is a lovely man and he
didn't want to tell the news without someone else confirming it.
What rescue meds are you using and what 's your plan? We use rectal
valium after 30 mins, then 15, then 71/2,then hospital after another
71/2, for a midaz needle. So an hour after he starts before we go to
the hospital.
Margaret

--- In MPEIparentsupportgroup@yahoogroups.com, "kiterain"
<kiterain@...> wrote:
>
> What gives this week?
> We have watched Micah seize quite a bit this week. We have had to give
> him rescue meds almost every day.
> It makes me crazy to hear that our kids are back in the hospital again
> and again. I wish that our children could move past this. We have been
> so stressed out just hoping for a miracle this week.
> It helps to hear about all of you and your struggles. I am sad that
> our children have to go through this everyday.
> Denise, I hope that your Harry boy is doing better. My heart has been
> with you this week.
> Margret, thanks for keeping us updated with bianca, precious little
> one, I hope that Leizel gets some time to take care of herself some.
> Nikki, I wanted to tell you to keep feeding Maddie, and if you have to
> get that swallow test done. We have struggled with that whole process
> for some time now and Micah was finally given an Ng-tube because he
> was aspirating fluid into his lungs. We have been told to think about
> putting a G-tube or Micky button in. I want to run screaming when the
> docs talk to us about these things. We did go back to feeding Micah
> thickened feeds this week because he has had such a hard time on the
> Ng-tube. I also wanted to let you know that Micah has had so many
> EEG's and continuous EEG's done and the docs still are reluctant to
> give Micah a diagnosis of MPEI. It is so irritating because we feel as
> though he matches everything very clearly.
> Laura, How is your Rylie girl doing beyond the continued stress of her
> feeding? Has she stopped vommiting yet? I just wanted to encourage you
> to keep plugging away. I know we have felt so out of our element this
> week, our prayers and thoughts are with you!
>
> Loves to all of you and your families, we send you hugs and kisses
> because we just need them! Blessings to you all...
> Rachel, (Micah's Mommy)
>