i was just wondering if anyone whos child is on the ketogenic diet has had
problems with kidney stones? my son was on the diet for 12 months this month.
and a couple weeks ago we were in the hospital because of bronchitis but just so
happened we were there when he stopped peeing for 24 hours and they didnt know
why. he was sooo sick his electrolytes were all out of wack. his potassium,
co2 was down to 4 normal is 24 i think. his bicarb, his magneism, and a few
others to they had to give him supplements. but the reason he stopped peeing is
because kidney stones were blocking him completly from going. he had to have
emergency surgery and now he has nephrostomy tubes going into his bag that he
has to pee out of that way for now cause the kidney stones were so big and
theres sooo many of them they said. he was soo sick and ended up in ICU and
everything. during the surgery they didnt think he was gonna make it through
cause normally they dont like to do surgery unless they know
for sure hes strong enough and his levels are good but in his case they had no
choice it had to be done or we may have lost him or he would have to be on
dialysis for his whole life. so we had to take the chance and luckily
everything was ok during the surgery but it was the scariest thing ive ever
been through. he was on ketocal formula cause he is completly tube fed. the
diet worked really well for him except that but now hes back on regular
pediasure and doing wonderful we have to have a surgery in a few weeks when he
is stronger to try and remove all of the kidney stones casue the nephrostomy
tubes arent permenent and have to come out soon. but since hes off the diet now
he hasnt had any seizures , he use to have 100 or more a day.
id just like to know if anyone else has been through this?
Jessica

ketokids@yahoogroups.com wrote:

There are 2 messages in this issue.

Topics in this digest:

1. re lethargy on the diet
From: "allbetterjohn"
2. Fwd: Alicia Witt and Dentistry
From: kate s


________________________________________________________________________
________________________________________________________________________

Message: 1
Date: Sat, 27 Aug 2005 02:30:17 -0000
From: "allbetterjohn"
Subject: re lethargy on the diet

Hi. My name is Alison. My husband's name is William. We have 2
children- John age 3
years2 months, and Callie age 15 months. Our son John has MAE. He
was diagnosed at long
last in Feb of this year after 5 months of seizure activity. He was
having 1/2 dozen seizures
a day with only one brief honeymoon period on zarontin in May. He
has been on phenobarb,
depakote, zonegran and zarontin. Currently he is on depakote 325
daily and zarontin 250
and has now been on the keto diet for 1 month. His seizures are
dramatically reduced, but
we are having some serious problems with ongoing lethargy and refusal
to eat.

We started as all keto kids do on a 4:1 ratio and now are on a 3.5 to
1 ratio. His lethargy, low
energy, weakness, poor appetite and sad mood persist despite a
reduction in his medication.
We are going to go to 3:1 ratio on Monday as our neuro thinks that
his symptoms are all due
to excess ketosis.

How many of you have gone through this? I am finding his weak sad
self to be so pitiful and
almost as distressing as his seizures. I know logically that we need
to persist because his
seizure activity is what will most affect his long term outcome, but
I am my heart is aching to
have my happy, energetic boy back. Any words of advice or opinions
would me most
appreciated. Alison Reinecke




________________________________________________________________________
________________________________________________________________________

Message: 2
Date: Sat, 27 Aug 2005 07:59:42 -0700 (PDT)
From: kate s
Subject: Fwd: Alicia Witt and Dentistry


Note: forwarded message attached.


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