Saturday, November 6, 2010

Insurance Co's and Anxiety.

Ahhhh Healthcare. ya gotta love it.

Well we are kicking off the diet today. A rough start. Supposed to have 10oz each feeding when she used to have 16oz of pediasure in the morning then an 8oz after school and then another 16 oz before bedtime. NOW we have to try 10 oz at a time..This morning she gagged and fussed and ate 6 oz of Ketocal and left 4 oz. We do not have any jucies in the fridge yet except for OJ so we mixed in 2 oz of that to make 10 oz of feed... Does that make any sense?? Well my stomach churned as I was mixing this into her bottle and well...I dunno what she thought of it. (gag)
Hubster took her out this AM and I graciously stayed behind so I could get some thoughts out. Kinda a mind cleansing. He went to Kholls the home of the "2 day mega sales" to hunt for a food processor to make her yum yums...mayo and chicken ya (my magic bullet bit the bullet...hardy har)
I am super nervous about this diet. I am a bundle of anxiety. Trapped in my anxiousness. Panic attacks galore. I NEED to stop looking at the whole picture and just take ONE day at a time. Madie is Madie. I want to KNOW what the diet will do. I dont want to worry anymore about seizures and her development and if this thing will mess with her tummy or make her vomit. Unfortunatly the only thing I can do is wait and see. Waiting is probably the worse thing you can make me do. Aside from dropping me off in a busy shopping mall...(lol)
We are still trying to get someone or some company or some insurance to pay for this stuff too..The samples from the hospital will not be enough. Like we need a case of this crap..the cans are small.. Talked to a woman at Graber Pharmacuticals that distributes stuff like this and she was so apoligetic to me saying that Anthem is not accepted by them and that since our secondary insurance CVS caremark prescription plan (dropping names) has denied the stuff 4 times already... She was so sorry saying there was nothing she could do unless we were on welfare section 19 (It would be given to us no questions asked) and if my husband was not working...She was so darn nice and thought that she was going to CRY talking to me! She was so nice..trying so hard to work it out. Gave me her number if anything and all I need is a credit card...(sigh) We are still going to work with Anthem instead of Caremark to see if we can clam it as a medical nessestity... that is to be continued. In the meantime there is a program at Miles' work that may be able to get some for us. we are waiting to hear back from them.
AND we will also try another company...Nutrica the company that makes the stuff.
*sigh* dunno.
Workin Workin...not giving up. We have been so blessed with supportive family and friend and even folks I have never met who live accross the US loving my madie and reading her story and giving me pointers or just a "You can do it mama" and it means the world to me.
In meantime we have about 2wks worth and a couple juice box size premade samples to get us thru for now.
Well time to go defrost some chicken and get more laundry going.
Please send good kharma and prayers we can pull this off...and mama can be less anxious and overcome her anxiety...Please throw in a good one for Austin too..he is about to embark on a journey that could grant him seizure freedom as well.



jocalyn said...

been there! we are weaning from the diet after much success the past 18 months. i will have lots of extra cans of ketocal i'm more than happy to send your way. just e-mail me.

also, it would have been helpful to know that coconut oil (unrefined) is an awesome way to add fat to some old favorites. we did bananas and coconut oil a lot. also unsaturated fats used early (canola oil, vegetable oil, flaxseed oil) is a good idea too. it prevents the dreaded high trigliceride panels.

just some thoughts. stick with it! kendall ate by mouth fairly well before the diet, but had to get a g-button 3 months into it. G buttons make the diet much easier, but i did everything possible to avoid it!

hang in there!!! and please let me know if i can help in any way.

Reagan Leigh said...

I was on a website yesterday...I think it's the yahoo special needs equipment exchange group...and I think I remember someone posting that they had some Keyocal available. You should definitely look into that! I remember we had a lot of issues in getting Ketocal approved by our wasn't until the doctor said it was her"sole source on nutrition" that they finally approved it!

Holli said...

I'm nearly in tears...because I vividly remember how it felt getting started on this diet, and I want to tell you that it DOES get easier. Not just the food prep, but the anxiety too. If you start to see improvement, it will boost you SO high it will really seem effortless! It is so overwhelming at first, and I honestly can't imagine having to buy so much KetoCal. Our insurance denied coverage too, saying that only if he were tube fed would it be "medically necessary". Boo! But, once you really start getting your feet wet in this ideas will start coming! Hang in there mama!! Deeeeeep Breath!! You CAN do this!

And Jocalyn is right about the bad fats...just a few months of too much cream, butter, and mayo increased Austin's triglycerides. I started using Smart Balance oil (canola, soy, olive oil mix) and cut down on the butter & mayo. Just adding enough for taste and compensating with the oil. It helped a lot. Have you thought of pureeing her fruit and maybe mixing it with whipped cream? Austin loves his strawberries & cream! :)

Good luck and keep us posted!!

And thanks for thinking of us! :)