Sad Day- Langan coming off keto = (

July 12, 2004

Hello all. I have delayed posting this message b/c I really didn't

want to face this myself, but we are doing what we have to do. After

yet another hospitalization last week due to metabolic acidosis, we

have reluctantly decided to take Langan off of keto. I am so sad

about this, but I do believe in my heart that it is the right thing

to do for her. For whatever reasons, her little body can't handle

the diet. We have given it seven + months and have had the pleasure

of seeing her med free for the past 3 + months, but things have once

again gotten out of control. Her bicarbs bottomed out again and she

started having seizures every day, which hasn't happened since she

was first diagnosed. As per our neuro's advice, we are slowly taking

her off of keto. She was on a 4:1 ratio and will be at 3:1 for two

weeks and we'll see where we are. There is a tiny part of me that is

hopeful that she can gain seizure control and avoid acidosis at one

of the lower ratios, but I don't know how realistic that is. She was

taking more bicarbonate than it looked like her little body could

take and it just wasn't helping. The kidney doctor thinks that the

acidosis is clearly pre-keto and may explain some of her issues and

give us a clue as to her diagnosis. That alone is enough to make me

grateful that we tried keto, as we would have never known what a

bicarb even was before. But it does make sense- the reflux; growth

delays; moodiness. We are hoping that we can get the acidosis under

control once she's off keto and see how she does when she is finally,

probably for the first time in her life, feeling good. Our neuro has

given us samples of trileptal but doesn't want us to use it until we

see how Langan does as she comes off keto. That is terrifying- like

walking a tightrope without a net- but I am thankful that she is not

super-eager to start the meds. I HATE the meds. I just hate the

acidosis and the seizures more. = (

I plan to stick around and participate in the group when I can. You

guys have gotten us through so much that I would feel like I was

leaving family to check out now. And who knows. If it turns out

that the acidosis is not pre-existing, maybe we can try keto again

down the road. Despite the complications, it really has been worth

the ride.

Hugs to all of your little ones!!

, mom to Langan, 2 yrs old on 7/19 and keto kid since 11/03;

starting to come off keto now b/c of acidosis problems; med free

since 4/2/04 and not looking forward to meds again. = (

July 12, 2004

Oh , I am so sad for you. You have tried so hard for Langan -

what a nightmare to have come so far and yet still not have the

answers... I so hope that maybe the lower ratio might just do it,

but I know where you're coming from when you say you don't know

whether that will work out or not.

I guess at least, if you do end up with meds again, you will be wiser

having gone through everything you have, and I hope and pray for you

that one med will work and you can avoid the 'cocktails'. My only

advice would be, having a 7 year old who was on various 'cocktails'

of drugs for three and a half years, just to stick to one drug if you

possibly can and really really watch for problems and pick up on them

as soon as you can. For example, we didn't notice Francesca's

language delay for a long time and speech therapy set in place much

earlier would have been enormously beneficial. Anyway, I know you're

on the case with Langan...

I was just wondering the other day how you guys were doing and nearly

put up a Langan and update request, as I read your posts with

interest.

I wish you and Langan very good luck - please DO keep up posted with

her progress.

Best wishes

, Mum to Francesca, Keto Kid since Sept 03, drug free and

working on those myoclonics...

> Hello all. I have delayed posting this message b/c I really didn't

> want to face this myself, but we are doing what we have to do.

After

> yet another hospitalization last week due to metabolic acidosis, we

> have reluctantly decided to take Langan off of keto. I am so sad

> about this, but I do believe in my heart that it is the right thing

> to do for her. For whatever reasons, her little body can't handle

> the diet. We have given it seven + months and have had the

pleasure

> of seeing her med free for the past 3 + months, but things have

once

> again gotten out of control. Her bicarbs bottomed out again and

she

> started having seizures every day, which hasn't happened since she

> was first diagnosed. As per our neuro's advice, we are slowly

taking

> her off of keto. She was on a 4:1 ratio and will be at 3:1 for two

> weeks and we'll see where we are. There is a tiny part of me that

is

> hopeful that she can gain seizure control and avoid acidosis at one

> of the lower ratios, but I don't know how realistic that is. She

was

> taking more bicarbonate than it looked like her little body could

> take and it just wasn't helping. The kidney doctor thinks that the

> acidosis is clearly pre-keto and may explain some of her issues and

> give us a clue as to her diagnosis. That alone is enough to make

me

> grateful that we tried keto, as we would have never known what a

> bicarb even was before. But it does make sense- the reflux; growth

> delays; moodiness. We are hoping that we can get the acidosis

under

> control once she's off keto and see how she does when she is

finally,

> probably for the first time in her life, feeling good. Our neuro

has

> given us samples of trileptal but doesn't want us to use it until

we

> see how Langan does as she comes off keto. That is terrifying-

like

> walking a tightrope without a net- but I am thankful that she is

not

> super-eager to start the meds. I HATE the meds. I just hate the

> acidosis and the seizures more. = (

>

> I plan to stick around and participate in the group when I can.

You

> guys have gotten us through so much that I would feel like I was

> leaving family to check out now. And who knows. If it turns out

> that the acidosis is not pre-existing, maybe we can try keto again

> down the road. Despite the complications, it really has been worth

> the ride.

>

> Hugs to all of your little ones!!

>

> , mom to Langan, 2 yrs old on 7/19 and keto kid since 11/03;

> starting to come off keto now b/c of acidosis problems; med free

> since 4/2/04 and not looking forward to meds again. = (

July 12, 2004

wendymmw wrote:

> I guess at least, if you do end up with meds again, you will be wiser

> having gone through everything you have, and I hope and pray for you

> that one med will work and you can avoid the 'cocktails'. My only

> advice would be, having a 7 year old who was on various 'cocktails'

> of drugs for three and a half years, just to stick to one drug if you

> possibly can and really really watch for problems and pick up on them

> as soon as you can. For example, we didn't notice Francesca's

> language delay for a long time and speech therapy set in place much

> earlier would have been enormously beneficial. Anyway, I know you're

> on the case with Langan...

Just wanted to say I agree so much with what said about not mixing

the drugs - don't know why neuros love to do that so but it makes such a

mess of the kids. Now that we are likely going back the drug route

(sigh) I am very clear in my mind that it is one drug at a time, give it

a shot, if it don't work, get rid of it before I add another.

Also about the diet, I have often wondered if a lower ratio would work

for Langan, I am hoping that as you go down you might find that. Perhaps

a lower ratio with the bicarb will work. And if not, it certainly was

not a lost experience, for either you or Langan. And so glad you're

sticking around

, 's mom

July 12, 2004

Oh , I'm so sorry that you guys have to come off keto. It's not

fair that our little ones have to go through this. It sounds like

you have an excellent neuro who is really looking out for Langan and

I pray that a med works for Langan if you do have to start meds

again, I hate the meds too. Kristan hasn't been doing well the past

few weeks, after a month and a half of having only 1-2 seizures a day

and even days with no seizures they are creeping back up again, we

just can't get her into high ketosis and I am starting to come to the

realization that maybe this diet just won't work for her.

Keep us posted , I hope things get better soon and you find some

answers.

Satnam, mom to Kristan, 19 months

Keto kid since August 2003

> Hello all. I have delayed posting this message b/c I really didn't

> want to face this myself, but we are doing what we have to do.

After

> yet another hospitalization last week due to metabolic acidosis, we

> have reluctantly decided to take Langan off of keto. I am so sad

> about this, but I do believe in my heart that it is the right thing

> to do for her. For whatever reasons, her little body can't handle

> the diet. We have given it seven + months and have had the

pleasure

> of seeing her med free for the past 3 + months, but things have

once

> again gotten out of control. Her bicarbs bottomed out again and

she

> started having seizures every day, which hasn't happened since she

> was first diagnosed. As per our neuro's advice, we are slowly

taking

> her off of keto. She was on a 4:1 ratio and will be at 3:1 for two

> weeks and we'll see where we are. There is a tiny part of me that

is

> hopeful that she can gain seizure control and avoid acidosis at one

> of the lower ratios, but I don't know how realistic that is. She

was

> taking more bicarbonate than it looked like her little body could

> take and it just wasn't helping. The kidney doctor thinks that the

> acidosis is clearly pre-keto and may explain some of her issues and

> give us a clue as to her diagnosis. That alone is enough to make

me

> grateful that we tried keto, as we would have never known what a

> bicarb even was before. But it does make sense- the reflux; growth

> delays; moodiness. We are hoping that we can get the acidosis

under

> control once she's off keto and see how she does when she is

finally,

> probably for the first time in her life, feeling good. Our neuro

has

> given us samples of trileptal but doesn't want us to use it until

we

> see how Langan does as she comes off keto. That is terrifying-

like

> walking a tightrope without a net- but I am thankful that she is

not

> super-eager to start the meds. I HATE the meds. I just hate the

> acidosis and the seizures more. = (

>

> I plan to stick around and participate in the group when I can.

You

> guys have gotten us through so much that I would feel like I was

> leaving family to check out now. And who knows. If it turns out

> that the acidosis is not pre-existing, maybe we can try keto again

> down the road. Despite the complications, it really has been worth

> the ride.

>

> Hugs to all of your little ones!!

>

> , mom to Langan, 2 yrs old on 7/19 and keto kid since 11/03;

> starting to come off keto now b/c of acidosis problems; med free

> since 4/2/04 and not looking forward to meds again. = (

July 12, 2004

Ugh, so sorry to hear that , but yes, it looks like you have no

choice.

Maybe, just maybe as you come down the ratio she will find a point ketone

and seizure wise that she can cope with. Any thought of Atkins style

instead? Or would that probably bring about the same result metabolically?

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

> Hello all. I have delayed posting this message b/c I really didn't

> want to face this myself, but we are doing what we have to do. After

> yet another hospitalization last week due to metabolic acidosis, we

> have reluctantly decided to take Langan off of keto.

July 13, 2004

I'm having trouble sending messages, so this will be brief, .

I am heart broken for you. YOu and Langan have been such an

inspiration to me. I am glad she will be feeling better, soon. And

I hope that when she is older, and if she is still having seizures,

you can try the diet again. You'll be in my thoughts and prayers.

I wish there was a way I could send a longer message.

God Bless,

Gretchen

> Hello all. I have delayed posting this message b/c I really

didn't

> want to face this myself, but we are doing what we have to do.

After

> yet another hospitalization last week due to metabolic acidosis,

we

> have reluctantly decided to take Langan off of keto. I am so sad

> about this, but I do believe in my heart that it is the right

thing

> to do for her. For whatever reasons, her little body can't handle

> the diet. We have given it seven + months and have had the

pleasure

> of seeing her med free for the past 3 + months, but things have

once

> again gotten out of control. Her bicarbs bottomed out again and

she

> started having seizures every day, which hasn't happened since she

> was first diagnosed. As per our neuro's advice, we are slowly

taking

> her off of keto. She was on a 4:1 ratio and will be at 3:1 for

two

> weeks and we'll see where we are. There is a tiny part of me that

is

> hopeful that she can gain seizure control and avoid acidosis at

one

> of the lower ratios, but I don't know how realistic that is. She

was

> taking more bicarbonate than it looked like her little body could

> take and it just wasn't helping. The kidney doctor thinks that

the

> acidosis is clearly pre-keto and may explain some of her issues

and

> give us a clue as to her diagnosis. That alone is enough to make

me

> grateful that we tried keto, as we would have never known what a

> bicarb even was before. But it does make sense- the reflux;

growth

> delays; moodiness. We are hoping that we can get the acidosis

under

> control once she's off keto and see how she does when she is

finally,

> probably for the first time in her life, feeling good. Our neuro

has

> given us samples of trileptal but doesn't want us to use it until

we

> see how Langan does as she comes off keto. That is terrifying-

like

> walking a tightrope without a net- but I am thankful that she is

not

> super-eager to start the meds. I HATE the meds. I just hate the

> acidosis and the seizures more. = (

>

> I plan to stick around and participate in the group when I can.

You

> guys have gotten us through so much that I would feel like I was

> leaving family to check out now. And who knows. If it turns out

> that the acidosis is not pre-existing, maybe we can try keto again

> down the road. Despite the complications, it really has been

worth

> the ride.

>

> Hugs to all of your little ones!!

>

> , mom to Langan, 2 yrs old on 7/19 and keto kid since 11/03;

> starting to come off keto now b/c of acidosis problems; med free

> since 4/2/04 and not looking forward to meds again. = (

July 13, 2004

-

You're a great mom. I have been following most of your post since

you first responded to one of mine in Aug of 2003. My son would be

17 months this month, so our kids were close in age. These seizures

will end one day that I am sure of. Your dedication and your

diligence has been an inspiration to me and others. Although, I am

sure you couldn't imagine it another way. But after spending months

in the ICU with Ethan, I have come to appreciate all who stick close

by there child's side...there are so many that don't. Hang in there

will be around, and know that we'll be thinking of you and wishing

for the best.

shelly mom to Ethan

2/2003-4/2004

> Hello all. I have delayed posting this message b/c I really

didn't

> want to face this myself, but we are doing what we have to do.

After

> yet another hospitalization last week due to metabolic acidosis,

we

> have reluctantly decided to take Langan off of keto. I am so sad

> about this, but I do believe in my heart that it is the right

thing

> to do for her. For whatever reasons, her little body can't handle

> the diet. We have given it seven + months and have had the

pleasure

> of seeing her med free for the past 3 + months, but things have

once

> again gotten out of control. Her bicarbs bottomed out again and

she

> started having seizures every day, which hasn't happened since she

> was first diagnosed. As per our neuro's advice, we are slowly

taking

> her off of keto. She was on a 4:1 ratio and will be at 3:1 for

two

> weeks and we'll see where we are. There is a tiny part of me that

is

> hopeful that she can gain seizure control and avoid acidosis at

one

> of the lower ratios, but I don't know how realistic that is. She

was

> taking more bicarbonate than it looked like her little body could

> take and it just wasn't helping. The kidney doctor thinks that

the

> acidosis is clearly pre-keto and may explain some of her issues

and

> give us a clue as to her diagnosis. That alone is enough to make

me

> grateful that we tried keto, as we would have never known what a

> bicarb even was before. But it does make sense- the reflux;

growth

> delays; moodiness. We are hoping that we can get the acidosis

under

> control once she's off keto and see how she does when she is

finally,

> probably for the first time in her life, feeling good. Our neuro

has

> given us samples of trileptal but doesn't want us to use it until

we

> see how Langan does as she comes off keto. That is terrifying-

like

> walking a tightrope without a net- but I am thankful that she is

not

> super-eager to start the meds. I HATE the meds. I just hate the

> acidosis and the seizures more. = (

>

> I plan to stick around and participate in the group when I can.

You

> guys have gotten us through so much that I would feel like I was

> leaving family to check out now. And who knows. If it turns out

> that the acidosis is not pre-existing, maybe we can try keto again

> down the road. Despite the complications, it really has been

worth

> the ride.

>

> Hugs to all of your little ones!!

>

> , mom to Langan, 2 yrs old on 7/19 and keto kid since 11/03;

> starting to come off keto now b/c of acidosis problems; med free

> since 4/2/04 and not looking forward to meds again. = (

July 14, 2004

Hi -

I'm so sorry it has taken me days to respond to your message. I'm vacationing

for the month (sort of) and only check messages about once per week. Don't have

time to respond like I would if I were home but definitely " lurk " . I think of

you guys EVERYDAY - wondering how Langan is doing - MISS our daily chats

terribly.

I just don't know what to say about having to take Langan off the diet. It

sounds like it might be the right decision as I know you have an excellent team

that wouldn't steer you in the wrong decision. My hopes are that Langan fares

better at a lower ratio. Higher ratio's can be troublesome for some kids. Way

too much fat. Perhaps you can find a happy medium where Langan can tolerate the

diet and keep her bicarb level under control. It's worth a shot. Maybe during

this 2 wk. stint, she will avoid acidosis and that may be the answer. BUT....

if acidosis continues, at least you have more answers than you did before. Like

you said, if you never attempted the diet, you wouldn't have the answers you do

now - BUT... if you stop the diet, Langan will be free to enjoy more foods at

varying times. Perhaps she will be happier. I can only pray that you see more

smiles. Don't blame you for feeling the pain when her g'pa verbalized the

sadness of never seeing her smile. I feel for

you all. PLEASE continue to update - always interested in how Langan is

doing!!!

I'll update you on as I'm sure you've been wondering as I have about

Langan. Well..... good news is that all of his genetic and GI testing turned

out negative. Ruling out the " worst of the worst " diagnosis' out there in my

opinion. We've been gone for over two wks. now and overall, he's doing very

well. Due to his apparent headaches ( he was blinking his eyes and batting his

head often) and terrible diarrhea, (poop explosions everyday which I thought was

b/c of the liquid vitamin) I cut out lactose first and then dairy altogether.

2 days after eliminating the dairy, diarrhea and poop " explosions " stopped. I

then eliminated dairy (eggs/butter/mayo) and his mood/energy level improved

dramatically. Not to mention (knock on wood) his myoclonic and t/c activity

decreased substantially. He went 13 days w/out a big seizure and myoclonics

were minimal (one every 3-4 days). He had his first t/c while in the car the

other day but it was 98 outside and humid behond belief.

In addition, it was threatening thunderstorms and I think the barometric

pressure had something to do w/ it. No dramatic changes in development -

unfortunately - but feel we found a missing link to the puzzle as far as seizure

triggers go. He's definitely happier and has more energy since eliminating the

lactose/dairy. We have an appt. at the end of Aug. w/ a new keto center and

will be anxious to hear their opinion of everything that has been going on.

Anxious to buy the go-gourmet yogurt maker so he can enjoy his " cream " meals

again.

Just very encouraged to be able to do things outside this summer w/out seizure

activity. We go to parks all the time and he gets plenty of exercise. A bit

worrisome that his vestibular system is out of whack which is troublesome but am

working on that too. WEIRD as ever to watch him stand on his head and hang off

the side of the couch more than I'd like to see but whatever.......

Also increased his calories (by 100) which appeared to be an answer. So far,

he hasn't gained any weight and it's been one month now. Who knows which had

more of an influence (increased cals. or elimination of lactose/dairy) but

whatever it is, it's working for now. Still waiting on seeing bigger changes in

development....

So, that's it in a nutshell. I'll definitely check in more often and will try

to reply to messages.

Hang in there! BIG hugs to Langan!

PS- how did the move go? Did Langan adjust well? Are you officially unpacked?

Things starting to settle down? Are you back to work?

(mom to - 2.5 yrs. old - ketokid since 7/03 - med free since

3/27/04 0 working on becoming seizure free - closer and closer!)

langansmom tuckerwing@...> wrote: