Hi from the Ketodiet list - need advice-long

[Guest guest]

Hi Patti,

My name is . I am familiar with you and Katera from the

Ketogenic diet list. You were a great monitor there and sooo

knowledgeable!!!!! Which is why I am writing to you. It seems like

the pecanbread list is really busy, so I'll understand if you don't

get chance to get back to me.

My daughter Abby (27 months, seizure disorder starting at 3 months,

severe global developmental delay, hypotonia, cortical vision

impairment, ?cp-quad) has been on the ketogenic diet since she was 7

months old. She was basically weaned from breast to the keto diet.

So I have never given her a " normal " diet. We had some really great

initial success on the keto diet. But an intestinal infection

through her off for 6-9 months. I think some lingering gut issues

have continued to interrupt success on the diet. I believe her

immune system is involved also in her seizure control. But, all of

that is too detailed for this email.

Because of continued lack of development, continued daily TC's, and

totally unsuccessful attempts to find something metabolically or

genetically wrong with her. We are revisiting the search for a

seizure focus. She initially had a PET scan done in Boston while

fully on the Ketodiet. We are now going out to Detroit to get

another PET done. The doc there firmly believes the ketodiet and

PET scans are incompatible. To get the scan, she needs to be ketone

free for 3-4 weeks. So, we are weaning the diet to get this scan

done, which is fine since her seizures haven't been controlled since

August, anyway.

I am interested in weaning to the SCDiet. But, can it be done

dairy, free? how about nut free? Mushy, pureed food is all that

she can handle (applesauce consistency). She is currently on a 1:1

ratio but still making ketones. Her foods are extremely limited

(chicken, egg, butter, oil, applesauce, baby food veggies, canned

pumpkin, RCF infant formula with microlipids and polycose powder,

fruit 2O and recently a tiny bit of diet sprite). I want the option

to be able to go back to the keto. But I'm hoping, in the short

term, the scdiet could keep her out of ketotis, while helping her

gut to fully heal, therefore allowing her to successfully go back to

the keto diet (assuming she is not seizure free on the scd, that

is). I have NO more faith in AED's!

Did you change or adjust calories as you weaned and made the

transfer? Did you find that keeping meals evenly distributed and

evenly sized mattered? What should I use as good mushy, non-dairy,

non-nut meals? Can I use Gerber baby veggies? How long before you

saw an improvement in seizures? Have you seen a change in energy

level or/ & developmental skills? Did Katera's keto doc approve?

Are you still seeing him for her seizures/neurology or did you have

to find someone else? Is she having particular blood work including

nutrition levels checked? Abby is using Theragram M advanced, calci-

mix and carnitor. Would she still need these? If so, who would

prescribe them? I'm sure, I have other questions, but this email is

probably way too long already.

I hope Katera is doing well and that you and your family have had a

nice holiday season so far. Thanks so much.

ee.walt@...

[Guest guest]

Hi ,

I remember you! I'll answer briefly ..... and then I'll post to you privately

with a longer response re: how to transition from Keto. First of all, yes....

you can do this diet dairy free..... and also nut free if you really need to. If

it's a texture thing, you can use nut butters..... Katera really has to have

everything either mashed or pureed well, too... I just blend everything with a

mini-food processor or hand blender. She will eat little bites of cookies or

muffins once in a while but I don't make them frequently so we use very little

nut flour....... and instead use almond butter, peanut butter, tahini (sesame

butter), etc.... and just mix it into her food.

No, you won't be able to use the jarred baby foods..... you'll have to cook

almost everything from scratch (not so hard really..... and you can cook a lot

and freeze small quantities)....... but just think about this: NO WEIGHING

FOOD, NO PLANNING MEALS on a computer program......... NO ketosis (I think it's

unhealthy long term...... and certainly made Katera stop growing while she was

on it). That sounds just like Katera toward the end..... she was at a very low

ratio but still making large ketones. Did you know that Dan and Diane Currier

are here?........ they are transitioning to SCD, making the final leap

off the Keto diet and fully SCD on January 1st! Katera has had a few seizures

recently and we did in fact start her on an AED but are staying on SCD for sure.

I'll write more privately.... but have to go start dinner right now.....

Patti

----- Original Message -----

Hi Patti,

My name is . I am familiar with you and Katera from the

Ketogenic diet list. You were a great monitor there and sooo

knowledgeable!!!!! Which is why I am writing to you. It seems like

the pecanbread list is really busy, so I'll understand if you don't

get chance to get back to me.

My daughter Abby (27 months, seizure disorder starting at 3 months,

severe global developmental delay, hypotonia, cortical vision

impairment, ?cp-quad) has been on the ketogenic diet since she was 7

months old

[Guest guest]

Hi back from the keto list. We live near Detroit and were on the keto diet for

over two years. Please e-mail if you need anything. We have a large house and

could even put you up. We would love to help in any way. We have been to

Children's and have had a PET done by Chugani.

Diane

> Hi Patti,

>

> My name is . I am familiar with you and Katera from the

> Ketogenic diet list. You were a great monitor there and sooo

> knowledgeable!!!!! Which is why I am writing to you. It seems like

> the pecanbread list is really busy, so I'll understand if you don't

> get chance to get back to me.

> My daughter Abby (27 months, seizure disorder starting at 3 months,

> severe global developmental delay, hypotonia, cortical vision

> impairment, ?cp-quad) has been on the ketogenic diet since she was 7

> months old. She was basically weaned from breast to the keto diet.

> So I have never given her a " normal " diet. We had some really great

> initial success on the keto diet. But an intestinal infection

> through her off for 6-9 months. I think some lingering gut issues

> have continued to interrupt success on the diet. I believe her

> immune system is involved also in her seizure control. But, all of

> that is too detailed for this email.

> Because of continued lack of development, continued daily TC's, and

> totally unsuccessful attempts to find something metabolically or

> genetically wrong with her. We are revisiting the search for a

> seizure focus. She initially had a PET scan done in Boston while

> fully on the Ketodiet. We are now going out to Detroit to get

> another PET done. The doc there firmly believes the ketodiet and

> PET scans are incompatible. To get the scan, she needs to be ketone

> free for 3-4 weeks. So, we are weaning the diet to get this scan

> done, which is fine since her seizures haven't been controlled since

> August, anyway.

> I am interested in weaning to the SCDiet. But, can it be done

> dairy, free? how about nut free? Mushy, pureed food is all that

> she can handle (applesauce consistency). She is currently on a 1:1

> ratio but still making ketones. Her foods are extremely limited

> (chicken, egg, butter, oil, applesauce, baby food veggies, canned

> pumpkin, RCF infant formula with microlipids and polycose powder,

> fruit 2O and recently a tiny bit of diet sprite). I want the option

> to be able to go back to the keto. But I'm hoping, in the short

> term, the scdiet could keep her out of ketotis, while helping her

> gut to fully heal, therefore allowing her to successfully go back to

> the keto diet (assuming she is not seizure free on the scd, that

> is). I have NO more faith in AED's!

> Did you change or adjust calories as you weaned and made the

> transfer? Did you find that keeping meals evenly distributed and

> evenly sized mattered? What should I use as good mushy, non-dairy,

> non-nut meals? Can I use Gerber baby veggies? How long before you

> saw an improvement in seizures? Have you seen a change in energy

> level or/ & developmental skills? Did Katera's keto doc approve?

> Are you still seeing him for her seizures/neurology or did you have

> to find someone else? Is she having particular blood work including

> nutrition levels checked? Abby is using Theragram M advanced, calci-

> mix and carnitor. Would she still need these? If so, who would

> prescribe them? I'm sure, I have other questions, but this email is

> probably way too long already.

>

> I hope Katera is doing well and that you and your family have had a

> nice holiday season so far. Thanks so much.

>

>

> ee.walt@...

>

>

>

>

>

>