AUTUMN IS HOME!!!!!!!!!!!!!!!!

[BlessedMama]

I have to say--this morning Autumn and her family were at church for the first time in over a month all together!!!

I do the children's message, and I nearly cried (and am right now!) when I saw Autumn come up to the carpet to sit down with her sisters! I knew she was coming, but also knew she is a little nervous about having seizures in public, so this blessed me greatly!

I told Ann about all of you praying, and many others I knew about--she really, really appreciates it so much! Thank you for your prayers! As she said, she knows they're not totally out of the woods yet, but what great hope--and to have their dd back from the drugged state she was in!!!!

Glad you are enjoying the wedding trailer--she said that came up at the last minute--somebody that somebody knew that somebody knew and he put it together for them in 2 days! Such a beautiful "gift"!

[just7]

What a great update, Trisch! The video was just beautiful.

[ilovemyminihorse]

That video was beautiful! Thank you for sharing.

[BlessedMama]

It's been a bit of a roller coaster ride for the Fortis--thanks for your continued prayers!


"It has been tough trying to figure out what is going on. Autumn’s seizures have gotten longer and stronger and she now loses bladder control with them. We are trying to figure out what happened. Is there a magic glucose/keyone level? Is there an exact calorie level she should be at? She is well into the keytone range that is considered desirable for the diet so there must be more to it than that. We are trying to figure out anything and everything we can to see if we can find any patterns to the whole situation. We met with the neurologist earlier this week. We know we need to get the seizures under control so we are prepared to put her back on meds if our attempts to adjust the diet do not begin to work. The only problem is that research shows that if you have failed more than 2 drugs (which we have) the likely hood of any additional drug working is less than 10%.



The diet that once looked so hard, now seems like a cake walk if we could only get it to work. Hopefully we will have some type of breakthrough."

[eshlemania]

Continuing to pray, Trisch.

[carrieayers]

Praying too! I feel so bad for this little girl. This must be so hard on her and her family.

Carrie

[Lisa A]

Still praying here too, Trisch! Thanks for sharing the wedding video!

[BlessedMama]

Thanks for your continued prayers! Here is an update I got this evening from Ann, Autumn's mom:

Perhaps I should write updates and prayer request more often…We had 10 hours without a seizure today and only a couple after so far.

2 days ago we went back to square one with the diet and have been giving Autumn the exact same food at every meal. I think I erroneously made the assumption that as long as Autumn was eating 4:1 ratio meal and showing high for keytones she was in the “required range” for the diet. However I think perhaps she was getting just a bit too many carbs from the lemon juice/water stevia ice cubeciles I was making her. Even though there is almost an insignificant amount of anything in them that may have been it. This was confirmed to me later today when I read a reply from a post on the Charlie foundation where a mom had told me they had been doing really well until one week when their daughter had been drinking a drink with stevia in it. The stevia itself is safe (unlike NutraSweet or splenda) but the minute carb is not. When they say this diet is exact, they mean it! The diet is to mimic putting the body into starvation so any little bit of extra calories will matter.

Also, the other thing I have noticed is that her morning fasting blood glucose level is almost her highest level of the day, and this is when she seizes the most. I am not sure why her body would have such a high fasting reading but once we find out I think that may give us some more answers.

I have no idea what the upcoming days ahead will bring but we are grateful for the insights we gleaned today.

We so need all of your prayers and are so grateful for all your feedback.

[ayj67]

Well, if it is the carb and exact carb, then there is a good chance Autumn will heal by careful and meticulous kept food journal. Will continue to pray.

[BlessedMama]

Thank you, ayj! I know there's a learning curve to all this, but Ann is a "crunchy lady" as one person put it, and she really knows how to research and "dive in"!