Re: Thinking about putting son on diet - Diabetes Insipidus

[Guest guest]

HI - my daugher Lily has DI secondary to bacterial meningitis as an

infant. Her hypothalmus was affected by the infection. She has

pan-hypopituitarism as a result. She has DI, low thyroid, low

adrenaline and low growth hormone. Her pitutitary does function, but

it under functions.

She gets replacement hormones for thyroid, growth and the DI. She

was on Prednisolone for the low adrenaline, but is off now. Her

function is enough so that so far, I can give her stress doses as

needed, rather than full time maintenance.

She is doing pretty well on the diet. One striking thing is that her

DDAVP dose has been cut to a third of what it was (she was on 6 pills

a day, now 2). Her urine also appears to be concentrated, where

before it was truly insipid. This started a couple of weeks after we

started the diet.

I'd be more than happy to compare notes, especially with regards to

the pituitary issues.

Caitlin, mom to Lily, 3 yrs. old.

> Hello

>

> I am thinking of starting my son on the Ketogenic Diet. I have a

> very good friend that has had her son on the diet for a few years

> and has done extremly well.

>

> My son is 21 months old... He has many other health issues. Which is

> why we are just exploring at this time. We are not sure if the

> Ketogenic Diet will interfer with his other health issues.

>

> He has many myotonic seizures a day. Some days we can count 75 in 5

> minutes. They can be very weak or very strong . Most times both his

> arms and his right leg are extended fully.

>

> We have tried the meds and keep chasing ourselves. We increase the

> meds and he is fine for about 7-10 days and then it started all over

> again.

>

> When he starts to have the cluster of seizures he has a sloshing

> noise that he dose. When he does this he gets a lot of gas in his

> tummy. We begin to have proplems with his feeding. He is g-tube fed.

>

> There are days that he seems to get stuck into seizure mode and

> cannot get out of it.

>

> Is there an other parent in the group that their child not only has

> seizures but also has Diabetes Insibidus? This is not surgar

> Diabetes it is very different. My son was born with no pitutary

> gland . So he has no natural hormones.

>

> Also is there a parent in the group that is having their child

> follow at Sick Kids in Toronto?

>

> If so I would like to connect with you and chat..

>

> Thanks