Re: , how is Langan doing?/

October 27, 2004

,

Thanks for the prayers. Believe me, I agree that we are extremely

lucky. I don't wish that horror on any of these sweet children, but

if it does happen to them then I hope they are as fortunate as we

were!

> U r very lucky. i hope if any of us finds ourselves in a situation

like that,

> we come out just as lucky. My prayers are with u and your child

> (briana 7, LGS)

>

October 27, 2004

Thank you, ! All prayers are very welcome. Although my

chances of relaxing any time soon are slim. = )

\

> ,

> My heart breaks reading your story. You must have been so

afraid. I will

> keep Langan in my prayers and pray that you can relax soon. So

glad to hear

> that she is back to herself.

>

> Love,

>

October 27, 2004

,

Thanks for the info. It definitely gives me something to think

about. They did check bicarbs in the hospital, and they were normal

(26, I think), but that was somewhere in the second half of 2+ hours

of seizure so who knows if it gives us an accurate picture. Langan

has flown many times before and I have just never even thought about

it. It is interesting to know that the acidosis issue can be even

worse flying. I can't imagine flying with her again for at least

100 years, so maybe by then we'll have her figured out. = ) She

really is an amazing little thing. She is just so happy and smiley

while we are still trying to get our heads screwed back on right.

Ugh. But I am so glad that she will have no memory of this anyway.

Even if I remember it until the day I die.... and I am sure I will!

It was really the strangest thing how it started. I laid her down

on the changing table and she looked up for a split second and I

thought she was going to complain about being put down. It was

almost like she looked at the overhead light and something just

went " click " but she has had tons of photo-sensitivity testing and

has never had any brain reaction to lights so it must have been my

imagination. I just don't know. But we are glad that the fever is

gone and that she is not showing any ill effects. She is our

miracle girl!

> Hi ,

> Sounds absolutely terrifying, and yeah the memory will prob be

like yesterday for quite some time to come

>

> Glad all's well now, and wanted to let you know something about

flying and the worries I had pre-vacation with last week...

>

> One of the medical information sheets that came with our tickets

mentioned something to do with the increased level of acidity in the

body when in the air due to the reduced cabin air pressure, (being

in an aircraft at altitude is similar to the air pressure at the top

of a 2500 m mountain I found out reading abut it afterwards...) and

I can remember thinking cripes, with 's topomax/acidosis woes,

this sounds a bit dicey...I actually had 2 very strong bourbons

before we boarded a) cos I hate flying fullstop and cos I was so

damn nervous about seeing a seizure....and no, hadn't had a

drink - he was the responsible cool calm in control of the kiddies

parent....

>

> So I am curious to know if Langans ph levels were checked in

hospital to see if a lowered ph/acidisos thing may have kick-

started/exacerbated the situation with the probable infection she

might have been brewing.

> Maybe it wouldn't have been relevant by then though, as it may

have been the drop back down in altitude and stabilising of her ph

that precipitated the nasties, not sure, I don't really undertand

that side of things v well, but def thought it might be worth

mentioning, especially if you plan to fly with her again.

>

> We obviously didn't have the opportunity to check how 's

blood ph had fared, so I don't know whether he had any metabolic

effects during or after the flight, if he did, it didn't eventuate

into a seizure, but boy was I relieved when that flight was over.

Wasn't as bad coming home again, cos I knew he had got thru the

flight there ok.

>

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

> From: langansmom

>

> Now for the bad news.... On our return trip from Florida, I

noticed

> that Langan felt really warm on the plane. I didn't think

much of it-

> just mentioned to my husband that we needed to take her temp

when we

> got home. But she was laughing and playing, so we didn't

worry.

> Right when we landed, I took her to the restroom to change her

> diaper. She was laughing and playing as we went in. I laid

her down

> on the changing table and all hell broke loose. She started

> convulsing- something she has never done before. Her seizures

have

> always been in her sleep and have always been a calmer,

rhythmic

> movement.

>

October 27, 2004

I remember oh too clearly one nightmarish night about 4 yrs ago now when

contacted pneumonia and had TC after TC in hospital in the ER, nothing

was working to stop 'em, they would just keep starting up again - and he was not

a typically TC kiddie, so it was v frightening. The on call Dr said at one point

at about 3 am, how soon can your husband get here, ominous words that I never

want to hear again

Anyways, he pulled thru it, as these amazing kiddies do....and woke the next

morning in this little ER curtained cubicle , pulled the oxygen mask off his

face, looked around, and said how did I get HERE? I was gob smacked that he

could even talk, and boy, they were the sweetest words I had ever heard. He then

demanded to go home like nothing had even happened! Meanwhile I was about ready

to collapse from the sheer stress of it all, I still go jelly-like thinking abut

it even now, and yes, it will probably will be one I will remember forever and a

day too.

Thank God they don't...

----- Original Message -----

From: langansmom