Tag: Supplements

BIG NEWS ALERT

After 3 tough months battling the insurance company to continue coverage for Daphne’s medicine (N-Acetyl-Cysteine) that may partially reverse her disease…
I WON!!!
Excitement is an understatement 🙌🏻
My last update on this topic was winning the appeal to get a 3 month courteous fill to give me time to fight them, many hours on the phone with various agents, trying to figure out the right form and process, trying to get the doctors office to do their part because in the end I can do all the work except complete the final paperwork, so annoying but thankful they stuck it through with me and I will be sending them a sweet 🎂 treat for being so sweet (a little exaggerated 🙄), but my dad always taught me “you attract more bees with honey”!
A special shout out to Paula at the insurance company.  I fell in love with the first agent I made an appeal with several months ago but Paula took it to a whole new level and really cared and took ownership in helping me.

You may think it’s easy but seriously some people and processes are setup just to be difficult just to make you quit, I swear.  

Follow me for a minute here…. 

Believe me it’s true, in my own job I see it and even play off it ( sorry not sorry sometimes) so that is just the case in other careers as well.  

One thing that has always given me the edge to not giving up are those people that say “Who’s going to own it?  Are you going to own it?”  They are saying this knowing good and well they should be the ones owning it but you being the better person, steps up and says, yes I will.

In the back of your head your doing this, because 1. You’re so good at it 😜, 2. You will learn valuable lessons along the way, 3. At some point in the future it will benefit you.

So thank you to all those who have done this.  You have gotten me to this point.  Thank you for teaching me how to help others want to do this as well. My rule in dealing with the insurance folks is to be nice, courteous, understanding, listen, be realistic in what I am asking for and take ownership of the issue.  Paula did all of those things and more.  She called me everyday when she said she would, to check on the status and she made the final step to get this approved happen!  Paula my dear, you have just made my dreams for Advocacy for Daphne’s Lamp a reality.  

I think this shirt was made for me and every other Mito mama I have met!

***It’s not my most glamorous picture but I will be honest I am usually in pajamas by 6pm and tonight squirmy little Daphne would not cooperate very well but that’s my life.

This is just the beginning, I am going to D.C to meet with Congress June 29th and I will be pushing for the next big thing.

Until I have to appeal again in another year, I am making steps to make this fight even easier, stay tuned for those details.

This is for my daughter Daphne and what the future of those involved in with #daphneslamp will look like. I don’t take NO for an answer and I will put up one hell of a fight, so get ready. Get on board with the movement it’s going to be BIG!

#mitostrong 💚 #daphnestrong

One thankful and Happy Mama tonight 😊

Reversible

So my super smart, amazing research scientist husband spends just as much time researching Daphne as he does his job.

Don’t ask me when he has time for the rest of life.

Seriously he researches A LOT!

He found an article that I hope has changed our lives.

An article that I hope helps others.

An article that I have been so scared to mention it out loud, let alone write about it

…because something bad would happen (don’t ask me what)

…people would bombard the scientist

…maybe science would say too bad so sad it will not work

…our doctors would not believe in it

I was scared.  I still am.

But I know the more science knows the better Daphne will be.

So here it is reversible

What is basically states is that there are 4 reversible mitochondrial diseases per her research.  2 fully reversible and 2 partially reversible based on a mild state and age diagnosis and some other stuff…..read it.

Daphne’s Disease is listed as partially reversible!

I mean when I read it and Rich and I talked about it I was so excited but then again contained my excitement so I didn’t jinx us or whatever else.

I met a Mito Mom who lives in Canada on a Facebook group I am  a member of who told me to research articles and contact the authors to see what they know and to do the same with clinical trials since neither one of our kids are old enough to participate.

I said Rich this is what the Mito Mom said, you have to contact this doctor.  So he did and she happened to respond super fast and was attending the National Symposium for UMDF in Seattle that we talked about going to but didn’t but we connected her with our Genetic Counselor so they could talk and meet.

We shared the article with our Metabolic Group and discussed the supplement N-Acetyl Cysteine which they wanted to discuss with us yesterday.

There are some GI issues that could come from it and maybe toxicity of the liver but she is functioning normal to date so we have to be a little careful with this supplement and will follow-up in 1 month to monitor her levels.

Also our San Diego Doc was just in the UK visiting her lab because of funding or a proposal she had requested.  Small freaking world!

As our Metabolic Team stated we are now in a very small select group in the World and will get to know just about everyone associated.

My angry point of this post however is that the doctors (both the NeuroMet team and the San Diego Doc) did not bring up this article or any science from it and it was published over a year ago.  RICH had to find it and really push them to explore this option.

This is even more justification that no matter how great of a medical team you have caring for your child, you are the only advocate for your child and much exhaust all means necessary to find a cure.

**This is exactly what I am talking about with all care not being equal and wanting to help bridge that gap for others that are less fortunate and do not have the resources or intellect to find this stuff out.  I truly believe that is one of my missions in my baby being given this stupid horrible disease.  I want to make this happen and do not want to be a website like all the others in memory of my daughters life.

I want my daughter to break the mold and defy the odds and science.

So the coolest part is the Doc in the UK recently received some money to study fibroblasts in the EARS2 gene mutations and she is willing to receive Daphne’s sample.  I mean have any of you ever had this type of connection?!

Ok, maybe you have but don’t burst my bubble, it’s stuff like this that got me through yesterday’s procedure.

I hope and hope that she can find something to help Daphne and advance science.  I have no idea on how long this will take.  I will keep everyone updated.

There is another article on a suggestion of an intermediate stage and the use of another supplement but we are pumping the breaks on that one as we will wait approx 3 months before starting Daphne on anything else.

So you know these supplements are NASTY in smell and taste.

Two of them we put in her bottle and hide it with a combo of breast milk, formula and oatmeal cereal.  We have tried oatmeal, applesauce and yogurt but to get her to eat enough to ensure it is all consumed is not fun, even if we do one bite.

Any tips for getting a baby to take them?

Thanks!!