Re: /

[Guest guest]

Well... am sure you are anxiously awaiting the

results. Make sure you let us know when you get them.

Got a bit anxious myself, but know it takes at least

a week or 10 days to get results from a 24 hour

reading. Ugh...

Sounds like pure " luck " that shall be returning

to school just before a school holiday. But... no

seizures. It has to be a bit stressful missing a

whole week of school and then returning - which you

know is yet another trigger. I'd actually be eladed

after each illness or stressful event knowing

made it through w/out seizure activity. Adrenaline

rush, I'm sure.

's doing great w/ the Carnitor. I'm going super

slow - still only giving him one 330mg. pill per day

but may increase tomorrow. He had about 10 myoclonic

jerks on Sat. which was a bit " shocking " . Honestly

though, we started giving him lactose free yogurt

cream about 3 wks. ago and for the past week, were

seeing (or hearing) about 1-3 myoclonic jerks every

other day. I " think " that, perhaps, he just can't

handle the polysorbate 80 as he, in the past, has

reacted terribly to any " sorbitol " . Have taken it

away but expect it to last for up to a couple of weeks

before it's eliminated from his system. Don't think

the jerks are related to the Carnitor in the least so

that's the good news. Also back to meal plans that we

are sure are OK for the time being. Very limited but

plan on introducing things one at a time from here on

out.

Hope enjoys this week now that he is feeling

better. You are in my thoughts.

--- & Hill rich.sue.hill@...>

wrote:

> Hi , nope - no results yet, but it will

> take quite a while for them to go thru the whole 24

> hr recording and then report on it, so I'm not that

> surprised really. I like to think is

> everyones' only patient but unfortunately, we

> (im) patiently wait our turn...

> We have a neuro appt on the 23rd, if I haven't had

> a copy by then I will get him to follow it up for

> me. I do expect them to def see ectopics, just

> hoping they are ventricular only this time (last one

> showed intermittent atrial as well) and that the

> number is reduced a heap on the last recording.

> Thanks for thinking of us

> went back to school yesterday after having

> had all last week off with the cold/ear

> infection/conjunctivitis saga, so we are back on

> track here - er just in time for the school hols to

> start at the end of this week

> This always seems to happen to us - gets

> sick before the school hols, so I have him home here

> getting bored, recovers in time for a brief stint

> back at school, only to have him home AGAIN for

> another 2 weeks of boredom on holiday. 's Law

>

> How goes it there with the carnitine - is no news

> good news on that front?

>

>

> ----- Original Message -----

> From: michelle paulson

>

>

> Hi -

> Was thinking of you today - wondering if the

> results

> were in from the 24 hr. ECG. Any ectopics

> picked up?

>

> AWESOME news there is no more ventricular

> dysfunction

> - that's reason to celebrate, in my opinion.

> Just one

> more thing has overcome. WOW.

>

> (mom to )

>

>

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> [Non-text portions of this message have been

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