Where can I begin.
We will get a few cans from Hartford tomorrow after we get madies blood work and height and weight checked..we will be recieving a 6 pack of Ketocal in the mail via UPS someday...Other than that this month looks like another out of pocket month for Ketocal.In case you wonder...well that is about 600 a month...PER MONTH. about 40 a can...if ya round it off..
Do any of these big whigs in the insurance companys have childrean with intraceable epilepsy? Lennox Gastaut Syndrome? Global Developmental Delays? I wonder.
The agents themselves well we cant go screamin at them...they have been nothing but kind and telling me they wished they could do something for me...its just the policies they follow. No sense in beating up poor Kathy from Anthem...
I try to understand that these companys are just following their policies and rules etc etc...
As a mom I am wanting to scream THIS IS MY CHILD!! MY CHILD! This Diet of 600 dollars a month can help her SO MUCH! HAS helped her! 4 years of horrible seizures and medications...specialists, therapies, unknowns...No reasons found WHY my child has her seizures..lets slap on a Fancy name for it and call it Lennox Gastaut. Then when she gets older we will scan her brain again and again and maybe throw in an Autism too!
My Madie angel has been just that...An Angel. Sweet happy (ok unless hungry, Tired or hurt or trying to poop...lol) Just overall happy..interactive as she holds onto your head giving her loveys and giggles..
I have thousands of pictures of her and over the years you can see it when she has bad days..the emptiness in her eyes and the circles under them.
I dont know how long Madie can be on this diet..I would like to hope soon we can start to introduce real food to her for the first time in over a year...maybe that will make it easier on the wallet.
To drift off ...we will actually be trying some unsweetened apple sauce in her mix..please keep some good encouragement for ME as I try once again to get my Madie to eat....
Although I have never tried this while she is on her Keto...may be different..
She is so much NOT like those old pictures of a "lost" little girl storing up giggles and loveys while seizures just nail her down..
This was from 2008...We had only been in our house a few months..I think she was on Zonegran and Topamax?? Unsure...gosh there have been so many..
She is getting bigger, HEAVIER, putting meat on her lil bones and when we get her bloodwork tomorrow we will determind if she is getting all the vitamins and minerals she needs as well..
She on ONE medication..still her Depakote Sprinkles. 2 vitamins...Her Carnatine and her half Scooby Doo (sugar free!) Seizures well...she had one large one on MOnday this week....I blamed our medicine mishap...I made a mess squirting it in her mouth and got it on her shirt and chin...sigh...OR was it low Ketones???
Hmmmm....
I hope I am not rambling too much...I am an ADDer and my brain just wants to spit out my thoughts as fast as they come...without forgetting! LOL
And Last Spring...May 2010
So I guess in a nutshell...We are going hell and high water to make this diet happen month by month...making sure we save enough each month or whatever to make it happen. Its been amazing...and to have to take her off the diet because its so expensive will break me in two. I cannot loose the madie that has emerged from this. Please wish me luck with trying some food with her...I have tried in the past with horrible luck..maybe just maybe this time will be better..
OH OH in the market for a new big girl bed for my big girl too!! I have good faith we will find her princess bed with lots of railings and pretty new bedding :) SO excited for that! :)On back burner for now...as we wait for ANOTHER appeal with insurance...sigh.
Have a great weekend!
me.
3 comments:
I hope this gets sorted out. I hate that red tape can threaten to take a miracle away from a little child. It sickens me that it is easier to get approval for $125,000 of ACTH than it is to get approval for a can of formula that is doing more than a ton of other treatments ever did.
I hope you continue to see the good days. I have come not to expect the nirvana of seizure freedom but to cherish the 30 days we get between seizures. We have been so lucky since starting the diet. I accept seizures as part of my child's journey but am beyond grateful for every change that keto has afforded her.
I think of Madie often and love that you are seeing some positive improvements.
I am a long time reader of your blog, delurking at last :) I really like reading it - it feels like having an easy conversation with a good friend, even though when the topics themselves aren't always easy. I have a 3 year old daughter too, not with seizures (yet?!) but with an undiagnosed genetic syndrome of some kind. Global developmental delay is the main symptom. She looks a little bit like your Maddie - same pretty brown eyes! I wish you the best & would LOVE to donate a bit to your Ketocal fund for Maddie. If you are comfortable doing so, you could set up a way people could donate through PayPal?
Sara, mommy to Tate
Thanks for all the support! I have faith that we will somehow get this formula paid for, whether through insurance or some other means... It'll happen! I've actually thought about setting up some kind of donation fund or charity fund or something - not for Madie, but just for any of our kids that could use some assistance, whether for medicine or just basic needs like diapers or clothes. We're fortunate that Madie's school has a program that provides us with things like that from time to time. Makes us want to do the same for other families! I know how much it brightens our day to be set with stuff like wipes or pediasure (when she could eat it lol).
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