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Re: Glenna

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Wonderful to hear you are pleased with your new Medical Team

Prayers sent your way for Macie

Hoping they give you an answer--or at least some help

Keep us posted

Is Macie still on the Diet?

Keto or Atkins?

Zara says " hi " to Macie

Sandi

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Hi Sandi,

Thanks for asking. As a matter of fact, since we raised Macie's

ratio back up to 3.5:1, we've seen a pretty big improvement. Her

ketones by urine still look the same as before. We're going to do a

stick tonight for blood BHB. I'm betting it is higher now. We've

been at this ratio before, with slightly lower calories...not good.

Who knows if it will continue to help, but we'll take it for now.

I'm already thinking that if this really works, I'll be PO'd at

myself for wasting almost 5 months, thinking her ketones were high

the whole time.

How about Zara, how have her days (and nights) been lately?

Hopefully you've still got good control.

Thanks for the support!

Glenna

-- In ketogenic , SJVC5@a... wrote:

> Maybe someday-our kids will benefit from the Keto Pill!

> How is Macie?

> Any changes since you saw the new Neuro?

> Wishing her seizure free days

> Sandi

>

>

>

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  • 3 weeks later...

Hi Sandi,

No, Macie was at a 2.6 when we went to the new center about a

month ago. We had worked down from a 3.3 to a 2.0, very slowly, over

a few months. It seemed for a while she did better with the lower

ratio and not so much protein. When she started having more trouble,

we went back up to 2.6 and stayed there until we went to the new

center. Her urine ketones were high always, no matter what the

ratio. Once we got to the new center and started the blood ketone

testing, we saw right away the 2.6 was only letting her be in the 2's

and 3's for blood ketones. We raised immediately to 3.5, lowered

cals a little, and started seeing results. She's been at 3.5 now for

a little over three weeks. First two weeks were good overall, now

we're seeing things creeping back. Blood ketones are generally in

the 3's again, glucose around 70-80. No changes in the diet, or

sickness that we can tell. Sorry if I didn't explain myself better

before.

THANKS!

Glenna

-- In ketogenic , SJVC5@a... wrote:

> Did Macie go from a 3.5 down to a 2.6 ratio--quickly?

> And are you back to a 3.5?

> Missed some posts--

> Sandi

>

>

>

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  • 2 weeks later...
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Hi Glenna! I knew you were going to Cincinnati Childrens, but I

thought you were north of Cincinnati for some reason -- had no idea

you were in Kentucky. I am in Louisville and my 3 year old sees Dr

Puri. He has been great until now, but he is falling on my list :)

I sure hope he redeems himself soon :) But anyway, Mikaela started

First Steps at 6 months of age and she had GREAT therapists. She is

now going throught the public school systems, but doesn't get NEAR

the therapy she needs. Because of that, I also take her to Speech,

Occupational and Physical therapy each week. She doesn't walk yet,

but is now getting around in her own little way. Not crawling per

se, but she gets around :) Where is Bath County in relation to

Louisville or Lexington?

So you are liking Cincinnati Children's huh? I was on their website

last night and noticed a Dr Holland. Mik saw a Dr Holland

when she had surgical evaluation at Cleveland Clinic and I'm

wondering if it is the same doc. Do you ahve any idea what this Dr

Holland looks like? I checked Cleveland Clinic's website and I

didn't see her name on there anywhere. Do you see Dr Holder for

general neuro stuff to or just Keto? Do you have good contact with

the dietician? I can't get ours to call us back after 3 left

messages. So you can tell I am getting very frustrated. I just

don't seem to be getting any finetuning attention that I think Mik

needs. And I wouldn't be against switching to Cincinnati -- it is

only 1.5 hours away. We go to Florence Mall often just for a change

of mall scenery so the drive isn't bad at all for us -- straight up

I-71. Well, I guess I will go now. I hear Mikaela in her room

stirring around so I'm sure she is up from nap. I hope that you and

do get to meet up on Tuesday. That would be awesome to pass

each other in the hall way :)

Shari

Mommy to Mikaela -- 3 years old and keto kid since 5/03.

We live in Central Kentucky (Bath County) and have started seeing

Dr. Holder at Cincinnati Children's.

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Guest guest

Hi Glenna! I knew you were going to Cincinnati Childrens, but I

thought you were north of Cincinnati for some reason -- had no idea

you were in Kentucky. I am in Louisville and my 3 year old sees Dr

Puri. He has been great until now, but he is falling on my list :)

I sure hope he redeems himself soon :) But anyway, Mikaela started

First Steps at 6 months of age and she had GREAT therapists. She is

now going throught the public school systems, but doesn't get NEAR

the therapy she needs. Because of that, I also take her to Speech,

Occupational and Physical therapy each week. She doesn't walk yet,

but is now getting around in her own little way. Not crawling per

se, but she gets around :) Where is Bath County in relation to

Louisville or Lexington?

So you are liking Cincinnati Children's huh? I was on their website

last night and noticed a Dr Holland. Mik saw a Dr Holland

when she had surgical evaluation at Cleveland Clinic and I'm

wondering if it is the same doc. Do you ahve any idea what this Dr

Holland looks like? I checked Cleveland Clinic's website and I

didn't see her name on there anywhere. Do you see Dr Holder for

general neuro stuff to or just Keto? Do you have good contact with

the dietician? I can't get ours to call us back after 3 left

messages. So you can tell I am getting very frustrated. I just

don't seem to be getting any finetuning attention that I think Mik

needs. And I wouldn't be against switching to Cincinnati -- it is

only 1.5 hours away. We go to Florence Mall often just for a change

of mall scenery so the drive isn't bad at all for us -- straight up

I-71. Well, I guess I will go now. I hear Mikaela in her room

stirring around so I'm sure she is up from nap. I hope that you and

do get to meet up on Tuesday. That would be awesome to pass

each other in the hall way :)

Shari

Mommy to Mikaela -- 3 years old and keto kid since 5/03.

We live in Central Kentucky (Bath County) and have started seeing

Dr. Holder at Cincinnati Children's.

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