Nikkie,

I finally did get your last message. I don't know if hotmail and yahoo
are mortal enemies, but it seemed to be pretty hard to get my message
delivered.

What I was going to tell you was that Rylie's barium swallow in June did
not go well. She was aspirating on every swallow. The doc was actually
surprised she hadn't had pneumonia yet and thank goodness, she hadn't.
She got her G-tube put in. A very sad day for me as I felt like it's
another step down, so to speak. Also, after the operation, she went
into status. She was in ICU and on 6 mgs of Midazolam (I may have the
dosage wrong in terms of mgs or mLs, but it was a lot) and was still
seizing but short of intubation. We had a sit down with the docs to
discuss what we were going to do if the seizing didn't stop and we made
the painful decision to let her go if things didn't change in 24 hours
as we didn't foresee any other options and were worried that more damage
would be done. Thankfully, she pulled through. It was a horrible,
horrible time. Absolutely the depths of despair, confusion, agony.

It was after all of this that the pheno was added. Seems to be working
well with the Levitracetam and the topiramate for her.

She's going in for her MIC-key button tomorrow (July 24th) in London,
Ontario at the hospital there. I have to say that she has been vomiting
more often with this tube - it's disconcerting.

Anyway, hope all is well with Maddie - big hugs from The Juicer and
Karys and the rest of the Nantau gang in Canada. Keep well.

Laura

--- In MPEIparentsupportgr oup@yahoogroups. com, nikkie tatton
<nikkietat@. ..> wrote:
>
> Hi Laura,
>
> Same thing keeps happening to me - did you get my last email in the
end?
>
> Wow, never thought phenobarb would help - we had Maddie on that at the
start but it did nothing for her. professor dulac thinks adding
carbemazepine as a third med will also help.
>
> I'll email you again later - at work now so better get busy!!
>
> Nikkie
>
>
> ----- Original Message ----
> From: rybozemom lnantau@...
> To: MPEIparentsupportgr oup@yahoogroups. com
> Sent: Friday, 20 July, 2007 4:45:42 PM
> Subject: [MPEIparentsupportg roup] Treatments
>
> Nikkie!
>
> I keep trying to get a message through to you but it keeps getting
> sent back as undeliverable. ...
>
> As per treatments, Rylie is on Levitracetam and topiramate and it
> was an excellent mix for her. It's reduced her seizures by a LOT.
> She's also back on 4 mgs of Phenobarb twice a day and that's helped
> even more.
>
> Glad to hear about Miss Maddie's new tricks. She's a doll.
>
> If anyone is interested in the UK, I also have a page on Facebook -
> very good page - like Myspace, but better, I think. I'm not sure if
> it's available in other countries other than Canada, US, and UK.
>
> Niks, I'll try writing again....
>
> Many hugs to everyone,
>
> Laura
>
>
>
>
>
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>