Well hate to say it but the seizure free days are a thing of the past yet again! Can I just scream now! This gets so frusterating sometimes. Whats even scarier is that they have come back in a different form! They consit of her falling flat out in the floor, eyes rolling all the way back, stiffing of the body for a few seconds. These last anywhere from 30 seconds to a minute then she will have some sort of a click or tick if you will then look around lost starring off even if I'm standing over her she will not move I'm guessing she is still in the mist of it all. Then she will get up and start screaming. I hate these I have left messages for the Neuro so we will see what he says. She does still have a few of her head drops a day maybe 1 or 2 and like 6 of the others and thats where we are at.
This is one of her seizures that I happen to catch while taking photos of the kids at the alligator farm! This is what it looks like when she is sitting up she gets very stiff I couldnt bend her arms and her eyes where rolled up she sat like that for a minute, might not seem like along time to some but to me it seemed an eternity! Especially since her norms are always so quick if you blink you would miss them!
On to the diet well what can I really say about it other than it being a complete pain in my butt. Its greasy, discusting and very time consuming! Cameran loves the breakfast minus the butter I even melt her butter and put it in her eggs and she still gets fussy over that. But eventually warms up to it. With the egg she is getting bacon and cream. I'm waiting for the Keto pancake meal add up from the nurse since I have no idea how to do it! ANyone that does she is on a 3:1 calories being 333 each meal.
On to the lunch the hardest part of my day, lets just say I have the pickest toddler and more so now that she really doesn thave that much to choose from. I explain that part in a minute! We have tried tuna, salami, chicken salad, ham and now pepperonis. The 1st 3 are out the door, she would not budge that little mouth of hers after the first bite. Today we tried the Pepperonis and she did great. Supper the only things I have for it are chicken or chicken, which is getting old quick!
I have requested 4 meal plans from the nutrionist 2 weeks ago and she just keeps telling me it takes time. But really how long does it take???
Cameran hates these foods and gags on the mayo because I just dont know what to do with it anymore! I have whipped it, hid it and fed it to her by itself! Nothing is working she hates it and I cant say I blame her. I use to love mayo now I cant even stand the sight of it. Weird too is that I thought every kid loved butter Lord knows Caleb does but not Cami of course she hates anything that she knows she has to have so we have hid it and it too does not work so I have to syringe feed it to her last. Stubborn Stubborn! I have never seen such a greasy mess; hair, face, clothes, tables, counters its everywhere!!!!!!!! I think I have lost all positive thought about now in regards to the diet. I just keep reminding myself it worked for 3 days so we can get back there again. I know she is having these additional seizures because I am having to make stuff up on my own and just guesstimate the weight....Bad on me but I am getting no help from the person I thought would help the most!
(Cameran will however eat grass, rocks, and here took bite of an alligators foot while there she also took a bite of the animal feed, also she pulls her hair out and eats it and Why I have no clue, I'm just so lost in the weird things she does)
I emailed the Neuro requesting another Nutrionist hopefully one locally because I have no clue in what I'm doing! I need someone who relazies that kids do get tired of eating the same ol same ol everyday. I just want atleast 3 different meal plans for each meal that I can alternate! Oh that felt better just needed to vent!
On to something funny that happened today and I needed a good laugh! But when you really think of it its not so funny because of the results she will have! But this morning it had gotten really quite too quite so I went on a hunt for a sneaky litte girl who I remind you makes you think that she doesnt know what she is doing but clearly does! Anyhow I checked the living room and upon the couch was her brother minding his own watching his am cartoons rapped up in a blanket totally oblivious to his surroundings! So on I keep walking and I come to an open door and if you live in my house this is a bad thing because Cameran gets into EVERYTHING! Well as soon as I walk into the room the floor makes a squeaking noise and gets her attention so she jumps and turns around holding something in front of her! And what you might ask does she have a chocolate pop-tart....OMG I panicked and ran towards her saying Cameran no no and she takes off shoving what she can salvage into her mouth! Then gave me the biggest brightest smile like......WHAT?
Could not help but laugh but oh boy are we gonna pay for that one!
I love this one, Caleb and Cameran with my two nieces Cheyenne holding her little sis Natalie! Miss you guys!
One last bit of good news is that her Pommel Walker got approved, due to be here any day I'll post some pics when we get it! This will really come in handy now that she is having a hard time with these new seizures! I'll keep you all posted on any news but she is not due for another appointment until May 11th and it is scheduled with an EEG! He might move it up though with these new things!
I'll be putting up a slideshow on here soon of more pics these where all taken on our Spring break trip to Louisiana to visit my family last week!
4 comments:
So sorry to hear how rough things are. I hope you either get a better hold on the diet or try something else. I know, not a lot else to try. Have you posted on the group looking for keto meal suggestions? Have you joined the yahoo keto group?
We're headed to DC for the weekend for the Walk for Epilepsy. I hope all goes well while we are away and I'll talk to you next Monday.
hugs,
Jen
Oh Karen,
Sorry to hear about all this annoyance. I'm discouraged for you! But let me give you a little hope (and sorry it's just a little)...
You are very likely right about the new seizures coming from your inaccurate meals. The keto diet is the most PRECISE diet on EARTH (no exaggeration), and if you're off an ounce, breakout seizures CAN happen.
You definately need another nutritionist. Mine would give me meals the same day! She would ask what kind of food she wanted (protein wise, let's say), and we would tweak it according to a computer program that would tell us how much cream, etc. Will they let you try Children's in B'Ham? The nutritionists there have been wonderful. There's also a version of that computer program that YOU can get for home. You may need to just do that in order to get what you want! If you can't find it on a google search, email me and I'll make a phone call.
She also may need the 4:1 version of the diet. I know it sounds horrid, but if it works? That'd be great.
And if you think it'll work better for Cam, there's a formula version of the diet in 4:1 form (can be modified for 3:1). It's called "Ketocal." If you think she'll take it better that way, look into it. All YOU do is measure the water and powder! Michaela had it by g-tube, but plenty of young children drink it by mouth. Maybe something like that will work for her, and you can even give her the "pink stuff" by mouth for a treat.
Michaela never DID do mayo. We always stuck with cream and butter. Have you tried the cream with flavorings, sweetener, and whipping it up? It looks so cool (we'd do purple!). We'd also do hotdogs with ketchup (mixed with a lot of butter--but RED, and deceptive! wink wink!)
Hang in there, friend. There ARE ways to make this easier, and workable. With the right help, and the right tools, you can make it work if it works for Cameran.
Please email me anytime if you need more help!
~Kelly
Karen -
My son Aidan was on a 3:1 ratio and only 765 calories per day and I still have all of his meal cards.
We did things like egg salad (which hid the mayo well), chicken salad w/goldfish crackers, spaghetti w/meat sauce (we used spaghetti squash) and a Jello meal that Aidan really liked.
We had to do a lot of tweaking with the diet even though Aidan had immediate success. Aidan had a few days while on the diet that his seizures changed from the normal head drops to where his body would shake on one side and then stiffen up. When he was done he would cry or scream. These seizures lasted anywhere from a few seconds to 90 seconds each. Luckily, they only lasted for a few days and we never had to use any emergency meds.
Good Luck,
Tara
Karen-
I LOVE the new pics, my favorite is her and Caleb where she is kissing him and her and the goats! She is an angel!! We will keep her in our prayers and we can't wait to see you guys again in June! We love and miss you bunches and give the kiddos love for us!
Love, Tasha and Kelsey
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