ne - Hannah / MCT crisis?

[Guest guest]

> You sound so very frustrated and down hearted by this continued seizure

> pattern Hannah is having. I am sorry, as I do not have any

> suggestions at this point, but share in your despair,

Thanks ne, it's good to know that you are there and thinking of us. You

are experiencing similar problems. Dont worry about no suggestions. I'm not

sure there are any definite answers right now, if at all.

The dietitian has suggested I do a 24 - 48 hour ketone profile to see what

Hannah's pattern is over a day or so. Once we know what it is, and if it

varies from the expected, we may be able to alter her feeding routine, and

consider any changes to her feed content/ratio. We decided to up the ratio

to 3.5:1 anyway. What a pain I have prepared in advance about 6 days worth

of 3:1 meals!

Havent hear about the MCT supply problem, but we use Calogen too, with Ross

Carbohydrate Free (RCF) formula, and Polyjoule for carbs. The calogen is 50%

water, 50% fat (long chain triglycerides) They are all funded through the

hospital system here in (as are all enteral nutrition needs). I get

them all on a script from the dietitian.

I appreciate your nervousness at the change of dietitian. We will be picking

up our fourth in as many years this November. Hope we both get keto friendly

ones.

I'm glad to hear that Gaby's pain is improving, but the seizures are not

surprising under the circumstances. They probably are temporary, but

temporary does not always mean a short time to our way of thinking. We'd

like them gone now, or next week, or some time soon, but they will settle

when the circumstances are right. Gaby has faced a lot of change

recently......routine, pain and discomfort, limited movement compared to

before, and I wonder if her feeding has been normal? So much has happened

and their little bodies have huge insults to recover from. Both our girls

are fighters and they will come through all this, but I'd rather it be

sooner than later. I'm with you on this one ne.

Cheers