Warning…vent inclosed…

[Anonymous]

Okay, so Kaden has been on Alimentum for 10 days now and I think he is doing FANTASTIC on it. I have no private insurance (gave it up when I went on Mat leave, as here in Canada we don’t need our own insurance for basic medical care). Had I known that we were going to have formula issues, I would have kept it. Oh well, what’s done is done.

I asked my ped to apply on our behalf to our pharmacare program, and we were DENIED. I am so ticked off right now…………….we just simply cannot afford his formula. I mean we can, but it is touch, we are a family of 6, but we will find a way.

Apparently, to meet EDS (exceptional drug status—which I was told Alimentum may), Kaden would have to have a diagnosis of CF, which he does not. Once I get my denial letter in the mail, I am going to appeal the decision. Seriously, it is not like Kaden has a choice as to what he eats, he is eating what is working for him.

I could go on and on, but there is no point. I am mad. I had thought that I read a document on this site, that one could “tweak” to make it personal and submit it to an insurance company. I am very good when it comes to writing letters explaining why something should be covered, but don’t know enough about reflux/intolerance to make sure I know what I am talking about.

Can anyone point me in the right direction? And, why would that be the only (or one of) the way that the government will step up and help with the cost? Who is to say that CF babies can ONLY tolerate Alimentum, so they will pay then? AAARRRGGGHHHHHH.

Sorry about the complaining

[Anonymous]

don’t worry about the complaining. I believe you may have luck if you look under the insurance tab and read the “going to the top” post. I think it might be stickied. Also Sheri (MFPIX2) is a pharmacist in Canada and I don’t know if she can help. Also Lori (s&h’s mum) is in Canada as well. You might want to pm them and see if they have any advice. Good Luck. I am glad the Alimentum is working.

[Anonymous]

Thanks for the info. It is all just so frustrating…………….although I am glad the formula is helping, it still frustrates me.

Now over to a different forum………..just can’t remember what it is called without looking at the name………….

[Anonymous]

Ds was on Alimentum for about 10 months and it almost borke us…our Ins. Co. would not cover it at all. We were denied left and right and at the time Jedd was 100% tube fed…!!!!!! Still denied.

We got lots of free alimentum from our [ped. since most children rarely need this formula there samples would ahve gone to waste if we had not been given them.

We also bought alot of it off of Ebay. It cost WAY less there. I never had any issues with the ones I bought there.

I also bought coupons of of Ebay to use in stores. That was a great way to save money.

Good luck.

[Anonymous]

HI Erin,

We had almost same story…..we live in missisauga canada and my son is refluxer…went thur so much so far.

pls call me,…. we will let you know how to deal with goverment

416-619-7575

[Anonymous]

HI Jessica,

My son is on neocate right now. He is doing ok..but i found he have corn allergy as well..so I want to try Alimentum.

Do you try to fed him thru g-tube Alimentum formula?

my son is also 90% gtube fed. Did you use powder or ready to fed for g-tube.

pls let me know.

[Anonymous]

We did both through the tube, the powder and the RTF. He was on 27 cal. mix so we took RTF and HAD to mix powder to it to bring it up to 27 calories per oz.

We also did a blended diet of stage 2 baby foods right through his tube once he hit aobut 13 months old. Inkow lots of mothers/parnets on another site who do this full time. There hcild is NOT on any commercial formula, it’s all blended foods in the G tubes.

I would jus tmix up the baby foods I wante him to have and sryinge it in the tube!!!! I could add oils and butter that way and he gained LOTS of weight AND he started vomitting less!!!

That was the start of our oral eating BTW…less vomitting means a more willingess to eat orally.

And…are you using a pump for the bolus feeds??? Kids tend to tolerat them better if they run in over the course of 30 mins. Verse doing them bysryinge in a matter of minutes.

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