Re: Sad Day- Langan coming off keto = (/

[Guest guest]

,

Thank you so much for the kind words and advice. This is really sad

but we are also hoping it is a new beginning. As the acidosis is

resolving (or appears to be, knock on wood), we are seeing our happy

little girl again. She is giggling and full of energy, which we

haven't seen in so long. Her grandfather actually got me in the gut

when he said, after we told him the decision, that " maybe we'll see

her smile now. " That really hit hard. She certainly smiles on

occasion but since this apparent mix of acidosis and keto, they have

been less frequent than before. I thought she was just having

trouble adjusting to keto, and so I am SOOOO thankful that our

wonderful keto dietician and neuro saw what was happening and did the

testing and here we are.

As for the " cocktail " , I totally agree. I know there have been

studies published recently about the AEDs being less effective when

given together. I am pretty sure our neuro agrees, but I will not

allow that to happen to Langan. She was on 2 meds twice- lamictal

and keppra, and I took her off the keppra and the seizures stayed the

same, and lamictal and zonegran, and I took her off the zonegran

after a wwek b/c she was so zoned out. I would rather live with the

occasional seizure than dope her up. On that we TOTALLY agree!

Thanks again for everything! I'll be checking in to see how

Francesca is faring. I hope all is well with you!

> > 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. = (

[Guest guest]

,

I hope you are right about the lower ratio working. Although my

husband is already dreaming of the days when we are letting Langan

explore new foods like a typical 2 year old, it would certainly be

worth the sacrifice to get the acidosis AND the seizures under

control. And even at 3:1, the diet seems so much more pleasant for

her. So we'll see and I'll keep you posted!

>

> > 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

>

>

>

[Guest guest]

,

You have been such a great help through this whole acidosis

nightmare. I don't know what I would have done without you and the

other moms (and dads) here. You really know the ins and outs of keto

so well. Thanks for everything!

I am told that Adkins won't work b/c the ketosis is still an acid-

based energy system. The nephrologist wants us all the way off

keto. We'll see how things go with the lower ratios and see. If we

do come completely off, I am thinking of giving Langan a little

period of time to enjoy food again (she was such a food lover before

keto)- but we won't be throwing in the sugars or anything. Then I

may try SCD to see how things go. It'll be nice to let her have food

when she's hungry and to let her eat until she is full, although on

this lower ratio that hasn't been a problem. I am looking forward to

letting her get messy with finger foods- we've had to sacrifice that

for the sake of getting in every bite. And I can't say I'll miss the

scale. But if the lower ratio is the magic trick for her then that's

where we'll stay, scale and limits and scheduling and all!!

I'll keep you posted. Thanks again! I hope all is well with !

> 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 -----

> From: " langansmom "

>

> > 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.