, how is Langan doing?

[Guest guest]

Hi , I've been thinking of you guys. How is Langan doing? Lot

more of walking I hope and NO seizures.

Kristan is doing ok, the wean is going well, we are to start 2.5:1

ratio today, but her dietitian hasn't gotten me the new recipes yet,

I hate it when she makes me wait! Still having seizures, everyday is

different, 5, 10, 15 or 20 a day. She is keeping up with her

vocalizing, which we are so happy with and I have noticed her trying

to take a bit of weight on one leg, it's hardly noticeable, but I can

tell as I work with her on this and am hoping she will start to take

more weight soon on both legs, right now her legs just buckle when

you try to stand her without the leg splints.

Hope all is well. Take care.

Satnam, mom to Kristan, 22 months

Keto kid since August 2003 and currently weaning from the diet

[Guest guest]

Satnam,

Thank you so much for checking on us. I am so happy to hear that

Kristan is making progress even with the seizures. Are you still

weaning? How far have you gone? I hope those nasty seizures go away

SOON!!

Langan is, today, doing absolutely wonderfully. She is happy and

progressing every day. She is now really into getting into the " bear

stance " where she is standing on her hands and her feet. She can't

figure out how to move from there so she moves her feet forward and

keeps her hands where they are and winds up doing a forward tumble.

It is too cute. We were on vacation in Florida earlier this month

and she started crawling- not consistently and she couldn't do it

when she thought about it, but when we put something she wanted out

of reach and she just reacted, she would get on all 4s and go get

it. I cried, of course. She is also still standing and working on

the balance to take steps on her own.

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. Anyway, I picked her up to see if she would stop but she

didn't. After 4 minutes, I gave her diastat. It wouldn't stop. She

was turning bright red. I ran and found my husband and we got help.

The airport med team arrived and a doctor came up and they put her on

an oxygen mask. They called an ambulance and had it pick us up at

the gate. They gave her valium on the ambulance- twice- but still

she continued. Her heart race was 190+ all this time. People in the

airport were crying. It was so unreal. We got to the hospital and

they got an IV on her and she continued to convulse. Her temperature

was 103.5. The EMT, a big burly fireman, came and hugged me, crying

like a baby. The security guard at the ER brought Langan a teddy

bear, tears running down his face. I can't tell you how many total

strangers with crises of their own came into our little area of the

ER to comfort us. Finally, after 2 hours, they got the convulsions

to stop. But she was still seizing. She was very rigid and her eyes

were darting all over. They brought her back for a CT and then,

after another 30 minutes or so, she finally stopped. She would jerk

here and there but nothing like before. When she " came to " , she was

strapped to the ER table, totally naked, cold towels all around her,

oxygen mask on her face, EKGs all on her chest, IVs in her arms. She

just looked around and tears streamed down her face. It was the

moment when I realized that we had NOT lost her. Until that minute,

I really thought she was gone. They did a spinal tap to rule out

meningitis, and lots of other testing- all normal except for the

elevated white count which indicated she had SOMETHING. It was a

nightmare. Early the next morning, we were allowed to go home. She

was, at that point, in fine spirits, laughing and sitting up and

playing. We held our breath to see what skills she would lose, but

we were so happy to have her ALIVE that we really didn't care. She

stayed up all of Wednesday, playing and happy as could be despite the

fever. We increased her trileptal dose and the neuro put her on 5

days of ativan to get her past the fever without another crisis. She

slept all of Thursday and Friday and then woke up Saturday and has

been her old self ever since. I know it is still early, but so far

she has proven to be a real miracle child. She is doing all of the

things she was doing before and learning new skills each day. I am

so amazed by her powerful spirit. To call her a " fighter " really

doesn't cover it.

Anyway, that is what is up with us. I would have posted about it,

but we have really been waiting to see what happens. I can't imagine

ever flying with her again- what if it had happened 15 minutes

earlier??? And I don't know when I will ever really relax again. It

was so unexpected. And soooooo horrible. But for now we are just

enjoying her and appreciating every second with her. Life can be so

fragile.

I hope all is well with you. Didn't mean to be a downer!

Hugs to Kristan!

, mom to Langan, 2 yrs old and keto kid 11/03 through 9/7/04,

weaned due to persistent metabolic acidosis, but keto kid at heart

forever.

>

> Hi , I've been thinking of you guys. How is Langan doing?

Lot

> more of walking I hope and NO seizures.

>

> Kristan is doing ok, the wean is going well, we are to start 2.5:1

> ratio today, but her dietitian hasn't gotten me the new recipes

yet,

> I hate it when she makes me wait! Still having seizures, everyday

is

> different, 5, 10, 15 or 20 a day. She is keeping up with her

> vocalizing, which we are so happy with and I have noticed her

trying

> to take a bit of weight on one leg, it's hardly noticeable, but I

can

> tell as I work with her on this and am hoping she will start to

take

> more weight soon on both legs, right now her legs just buckle when

> you try to stand her without the leg splints.

>

> Hope all is well. Take care.

>

> Satnam, mom to Kristan, 22 months

> Keto kid since August 2003 and currently weaning from the diet

[Guest guest]

Oh my god , your story just brought tears to my eyes. How

terrifying, I can't even imagine what you must have been going

through. Thank god Langan is back to her normal self. Do they know

what would have brought that on? Thank god you guys hand landed.

Langan is strong, and I am so glad she made it through that. I don't

know why god puts our kids through this, only god knows. That is so

sweet that all those strangers were able to offer comfort through

that tough time. Oh my god, I still can't believe that. I'm so

sorry she, you and your husband had to go through that.

The " bear stance " you describe sounds so cute.

We are still weaning Kristan from the diet. We are to go to 2.5:1

this week, but her dietitian hasn't provided me with the new recipes

at the new ratio.

Take care , you guys have been through a lot. I pray that

things continue to go well.

Satnam, mom to Kristan, 22 months

Keto kid since August 2003 and currently weaning from the diet

> >

> > Hi , I've been thinking of you guys. How is Langan doing?

> Lot

> > more of walking I hope and NO seizures.

> >

> > Kristan is doing ok, the wean is going well, we are to start

2.5:1

> > ratio today, but her dietitian hasn't gotten me the new recipes

> yet,

> > I hate it when she makes me wait! Still having seizures,

everyday

> is

> > different, 5, 10, 15 or 20 a day. She is keeping up with her

> > vocalizing, which we are so happy with and I have noticed her

> trying

> > to take a bit of weight on one leg, it's hardly noticeable, but I

> can

> > tell as I work with her on this and am hoping she will start to

> take

> > more weight soon on both legs, right now her legs just buckle

when

> > you try to stand her without the leg splints.

> >

> > Hope all is well. Take care.

> >

> > Satnam, mom to Kristan, 22 months

> > Keto kid since August 2003 and currently weaning from the diet

[Guest guest]

Hi ,

I justread about your terrifying experience with Langan. I

couldn't read fast enough. Though I knew she would be OK in the

end, I was so hoping there would be an explanation. Was it just a

run of the mill illness/fever?

I think we all know that feeling of seizures happening so

quickly, completely out of the blue. Luckily, time between these

events helps us so that we don't end up walking around in a state of

perpetual fear and anticipation.

Since there is the fever connection, maybe just having ibupropen

with Langan at all times, so that fevers can be rapidly brought

down, will ease some of your fear.

I don't know how long ago that happened, but I am relieved to

know that she has returned to her normal self with no apparent

effects from the prolonged seizure.

And, I am so glad there were many caring strangers around to

give comfort. What a touching picture you paint, of Langan waking

up on the ER table, teary and probably very afraid, but her loving

parents right beside her, overwhellmed with love and joy, knowing

she had survived.

You must always keep us all posted on Langan. She is in many

many hearts around the world.

Gretchen

> >

> > Hi , I've been thinking of you guys. How is Langan doing?

> Lot

> > more of walking I hope and NO seizures.

> >

> > Kristan is doing ok, the wean is going well, we are to start

2.5:1

> > ratio today, but her dietitian hasn't gotten me the new recipes

> yet,

> > I hate it when she makes me wait! Still having seizures,

everyday

> is

> > different, 5, 10, 15 or 20 a day. She is keeping up with her

> > vocalizing, which we are so happy with and I have noticed her

> trying

> > to take a bit of weight on one leg, it's hardly noticeable, but

I

> can

> > tell as I work with her on this and am hoping she will start to

> take

> > more weight soon on both legs, right now her legs just buckle

when

> > you try to stand her without the leg splints.

> >

> > Hope all is well. Take care.

> >

> > Satnam, mom to Kristan, 22 months

> > Keto kid since August 2003 and currently weaning from the diet

[Guest guest]

,

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,

[Guest guest]

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.

[Guest guest]

((((((((((((()))))))))

that was so terrifying......so glad she is okay now.

What a life

langansmom wrote:

>

> Satnam,

>

> Thank you so much for checking on us. I am so happy to hear that

> Kristan is making progress even with the seizures. Are you still

> weaning? How far have you gone? I hope those nasty seizures go away

> SOON!!

>

> Langan is, today, doing absolutely wonderfully. She is happy and

> progressing every day. She is now really into getting into the " bear

> stance " where she is standing on her hands and her feet. She can't

> figure out how to move from there so she moves her feet forward and

> keeps her hands where they are and winds up doing a forward tumble.

> It is too cute. We were on vacation in Florida earlier this month

> and she started crawling- not consistently and she couldn't do it

> when she thought about it, but when we put something she wanted out

> of reach and she just reacted, she would get on all 4s and go get

> it. I cried, of course. She is also still standing and working on

> the balance to take steps on her own.

>

> 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. Anyway, I picked her up to see if she would stop but she

> didn't. After 4 minutes, I gave her diastat. It wouldn't stop. She

> was turning bright red. I ran and found my husband and we got help.

> The airport med team arrived and a doctor came up and they put her on

> an oxygen mask. They called an ambulance and had it pick us up at

> the gate. They gave her valium on the ambulance- twice- but still

> she continued. Her heart race was 190+ all this time. People in the

> airport were crying. It was so unreal. We got to the hospital and

> they got an IV on her and she continued to convulse. Her temperature

> was 103.5. The EMT, a big burly fireman, came and hugged me, crying

> like a baby. The security guard at the ER brought Langan a teddy

> bear, tears running down his face. I can't tell you how many total

> strangers with crises of their own came into our little area of the

> ER to comfort us. Finally, after 2 hours, they got the convulsions

> to stop. But she was still seizing. She was very rigid and her eyes

> were darting all over. They brought her back for a CT and then,

> after another 30 minutes or so, she finally stopped. She would jerk

> here and there but nothing like before. When she " came to " , she was

> strapped to the ER table, totally naked, cold towels all around her,

> oxygen mask on her face, EKGs all on her chest, IVs in her arms. She

> just looked around and tears streamed down her face. It was the

> moment when I realized that we had NOT lost her. Until that minute,

> I really thought she was gone. They did a spinal tap to rule out

> meningitis, and lots of other testing- all normal except for the

> elevated white count which indicated she had SOMETHING. It was a

> nightmare. Early the next morning, we were allowed to go home. She

> was, at that point, in fine spirits, laughing and sitting up and

> playing. We held our breath to see what skills she would lose, but

> we were so happy to have her ALIVE that we really didn't care. She

> stayed up all of Wednesday, playing and happy as could be despite the

> fever. We increased her trileptal dose and the neuro put her on 5

> days of ativan to get her past the fever without another crisis. She

> slept all of Thursday and Friday and then woke up Saturday and has

> been her old self ever since. I know it is still early, but so far

> she has proven to be a real miracle child. She is doing all of the

> things she was doing before and learning new skills each day. I am

> so amazed by her powerful spirit. To call her a " fighter " really

> doesn't cover it.

>

> Anyway, that is what is up with us. I would have posted about it,

> but we have really been waiting to see what happens. I can't imagine

> ever flying with her again- what if it had happened 15 minutes

> earlier??? And I don't know when I will ever really relax again. It

> was so unexpected. And soooooo horrible. But for now we are just

> enjoying her and appreciating every second with her. Life can be so

> fragile.

>

> I hope all is well with you. Didn't mean to be a downer!

>

> Hugs to Kristan!

>

> , mom to Langan, 2 yrs old and keto kid 11/03 through 9/7/04,

> weaned due to persistent metabolic acidosis, but keto kid at heart

> forever.

>

>

> >

> > Hi , I've been thinking of you guys. How is Langan doing?

> Lot

> > more of walking I hope and NO seizures.

> >

> > Kristan is doing ok, the wean is going well, we are to start 2.5:1

> > ratio today, but her dietitian hasn't gotten me the new recipes

> yet,

> > I hate it when she makes me wait! Still having seizures, everyday

> is

> > different, 5, 10, 15 or 20 a day. She is keeping up with her

> > vocalizing, which we are so happy with and I have noticed her

> trying

> > to take a bit of weight on one leg, it's hardly noticeable, but I

> can

> > tell as I work with her on this and am hoping she will start to

> take

> > more weight soon on both legs, right now her legs just buckle when

> > you try to stand her without the leg splints.

> >

> > Hope all is well. Take care.

> >

> > Satnam, mom to Kristan, 22 months

> > Keto kid since August 2003 and currently weaning from the diet

>

>

>

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a last

> resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a

> professional keto team!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-unsubscribe

>

>

>

>

>

[Guest guest]

,

Wow.. what an ordeal that was -- I'm so sorry but so releived to hear

that she's fine now. As I was reading, I was thinking about 's

one and only status episode, which I thought was horrible at the

time. It was nothing like you experienced with Langan. 's was

due to a viral infection of some sort but she had not had a fever.

Also, both of her ears were infected and she had not complained at

all.

Sounds like Langan is doing wonderfully since the " event " -- yipee!

I pray that this was a one time thing and that you will NEVER

experience anything even close to it again. God surrounded you with

angels, though. Like you said, thanks be to God that if it had to

happen it happened when it did and not while you were in flight.

Before long she will be running and you will be chasing her and

wishing for a break.

Cammie

[Guest guest]

,

Thanks for the hugs! I have seen your posts about how great Jess is

doing. Please know there will be fingers crossed here in Tennessee-

hoping and praying for a peaceful November for you guys!

> > >

> > > Hi , I've been thinking of you guys. How is Langan doing?

> > Lot

> > > more of walking I hope and NO seizures.

> > >

> > > Kristan is doing ok, the wean is going well, we are to start

2.5:1

> > > ratio today, but her dietitian hasn't gotten me the new recipes

> > yet,

> > > I hate it when she makes me wait! Still having seizures,

everyday

> > is

> > > different, 5, 10, 15 or 20 a day. She is keeping up with her

> > > vocalizing, which we are so happy with and I have noticed her

> > trying

> > > to take a bit of weight on one leg, it's hardly noticeable, but

I

> > can

> > > tell as I work with her on this and am hoping she will start to

> > take

> > > more weight soon on both legs, right now her legs just buckle

when

> > > you try to stand her without the leg splints.

> > >

> > > Hope all is well. Take care.

> > >

> > > Satnam, mom to Kristan, 22 months

> > > Keto kid since August 2003 and currently weaning from the diet

> >

> >

> >

> >

> >

> > " The Ketogenic Diet....a realistic treatment option, NOT just a

last

> > resort! "

> >

> > List is for parent to parent support only.

> > It is important to get medical advice from a

> > professional keto team!

> > Subscribe: ketogenic-subscribe

> > Unsubscribe: ketogenic-

unsubscribe

> >

> >

> >

> >

> >

[Guest guest]

Cammie,

Thank you so much for your good thoughts and prayers. We'll take all

the prayers we can get that we NEVER go through this again!

I am sure 's episode was equally terrifying to you- nothing like

being a mom and not being able to help your baby. Ugh. Here's

hoping neither of us have to experience anything close to these

things ever again!

>

> ,

>

> Wow.. what an ordeal that was -- I'm so sorry but so releived to

hear

> that she's fine now. As I was reading, I was thinking about 's

> one and only status episode, which I thought was horrible at the

> time. It was nothing like you experienced with Langan. 's was

> due to a viral infection of some sort but she had not had a fever.

> Also, both of her ears were infected and she had not complained at

> all.

>

> Sounds like Langan is doing wonderfully since the " event " --

yipee!

> I pray that this was a one time thing and that you will NEVER

> experience anything even close to it again. God surrounded you

with

> angels, though. Like you said, thanks be to God that if it had to

> happen it happened when it did and not while you were in flight.

> Before long she will be running and you will be chasing her and

> wishing for a break.

>

> Cammie