Re: Wish Us Luck!!!/Carolyn

[Guest guest]

Carolyn,

I am so sorry that iel is having such a difficult time.

Acidosis can be very serious. I would love to help, but I do think

you need the care of a medical professional on this issue. You

should not have to treat the acidosis without a doctor. Too much

bicarbonate could cause problems also, and you would need the advice

of a doctor on what to look for in terms of bad reactions to it. Is

your neuro refusing to help? Do you have a pediatrician? Who

treated iel before you started the diet? Was he on

medication? Does he have a diagnosis? Do you know what his

bicarbonate levels have been, to be diagnosed with acidosis? Again,

this can be a very serious condition and it needs immediate medical

treatment. I would consult whoever was treating your child before

the diet if your diet neuro will not help. If you can't get help

from them, go to your pediatrician. If that won't work, go to the

emergency room. PLEASE do not try to treat this on your own.

You can email me directly at tuckerwing@.... I wish I could fix

things for you, but I am not a doctor and this is a very serious

issue. Many kids can stay on keto and be treated for the acidosis.

Langan was not one of them. But either way the acidosis must be

treated.

Keep me posted. I will be looking to hear from you.

> ,

>

> Your story sounds our...

> aël is on keto diet since the end of july 04 and he's on

acidosis, We're now at 2.1 ratio too but he's still on acidosis, the

problem is that I don't know what to do with this, neuro from

hospital didn't say anything ....We are alone!!!!

> I'm very scared too because Nath was a bit better but still have

tonic clonic seizures but he's so miserable that it hurts me a lot

to see him poor , tired, sick, white and his rings under his eyes!!!

> I wish you good luck of course for the following and if you could

tell me more about metabolic acidosis it'll be great...I give you my

email caronath@t... .

> I give since yesterday Nath bicarbonate of sodium in powder but I

don't even know how much to give him....

>

> Lots of love

>

> Carolyn, aël's mum

>

> PS/ Saro gave me the idea to ask you,thanks to her!

>

>

> Wish Us Luck!!!

>

>

> Hello all. As most of you know, we have been s-l-o-w-l-y

weaning

> Langan from keto because of her persistent acidosis issues. We

were

> at a 3:1 ratio for quite a while and moved down to 2:1 last

> Saturday. When we lowered, our neuro agreed to let us stay at

a very

> small dose of trileptal (75 mg 2X a day) to see what happened,

> instead of increasing with the diet change. We saw a seizure

the

> first night and one 3 days later and then they started tapering

off.

> Strangely, though, Langan had low ketones when we first dropped

and

> then they jumped to large by the middle of the week. And,

> unfortunately, even at 2:1 her bicarbs were 16, which is just

not an

> acceptable level given her history. Soooo the neuro and

dietician

> have given us an 8 day weaning schedule. And I am

TERRIFIED!!! What

> am I going to do without the scale???? If we saw seizures with

each

> change when we were moving at a snail's pace, how bad is it

going to

> be at this pace? I totally agree with the neuro that it needs

to be

> done so we can see what is going on metabolically with Langan,

but at

> the same time I am so scared. We're staying where we are

medicine-

> wise to see what happens and hopefully we can weather the storm

and

> stay at a low dose. PLEASE wish us luck. We'll keep everyone

> posted, and I'll still be around this wonderful keto family,

but I am

> just sooo scared to take this step.

>

> Thanks!

>

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

weaning

> from keto due to metabolic acidosis, scared to death!!

>

>

>

> " 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

>

>

>

>

>