WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Friday, May 31, 2013

Train Wreck!

Things have been good for us this year with Abby. Apparently too good.

I had shared before the saga of the wisdom teeth(which she is keeping)

We have visited a number of dentists over the past 6 months. All of them instantly wanted to focus on the wisdom teeth. We knew she had some pit cavities and we had noticed significant changes to the color on her enamel, but when we would bring the subject up to the dentists it was always, "we can address that after we remove the wisdom teeth."

There are a ton of reasons not to have her wisdom teeth out. When she had the muscle biopsy and kidney biopsy and constant trips to the Dr. it was simply too hard on her body and we watched her get sicker, not better. After almost 2 years of intense work on Abby's part, we just "know" that wisdom teeth removal would set her back months...

So finally found a specialized dentist who referred us to another specialized dentist.. sounds familiar right?

Abby saw the new Dentist.

What we found out horrifies me. Her teeth are destroyed. Between last year and this year her teeth have simply started falling apart.

Of course my first thought was I am a terrible parent! Then I thought, what have missed in her diet? Then I thought fixing this is going to kill her... and admittedly I thought about the horror of having destroyed teeth. Let's face it, in America we all want those perfect teeth.. Religiously since she was 2 she had dental cleanings, braces, everything we were supposed to do.. Abby is one of those people who you may not notice until she smiles and she lights up, total transformation. Mega Watt smile. We have always worked very hard to keep the girls teeth in great condition. So you can imagine my horror.

The cost is mind blowing. The damage is mind blowing.

What caused it?


Abby always has a low PH, which means high acid. Now to find out why she has such a low PH. We were reassured that there is nothing absolutely nothing we could have done to have caused this.. not normal in a year, even if she ate batteries for breakfast, lunch and dinner. This is only seen in the significantly chronically ill population.

After googling, and chatting with a few families, apparently this has happened to other patients who have mito and other various diseases.

Learn from us. Make sure you keep the acidity low in the mouth.

You can actually buy test strips to test in your mouth quickly to check. There are supplements to reduce acidity. Leafy greens are great to help reduce it. What you use for toothpaste can make a difference. As we move forward with this dentist I am sure we will learn many new methods to slow further damage.

Make sure to drink plenty of water.

Make sure to find a terrific dentist. I am more then a little stunned by the lack of care by various dentists. To have so many not listen to our concerns and to fixate on the wisdom teeth(little money makers!) instead of being more concerned about not just her overall dental health but her overall health. How many times do we hear on the news that our teeth reflect our overall health? Yet so few Dentists practice what they preach. It is like Drs. on the commercials and talk shows talking about getting second opinions, nutrition, etc yet despite seeing hundreds very few practice what they preach are the best patient practices.

Make sure to have a saving account dedicated to dental care, right now we are looking at costs that exceed her medical care for the past 2 years.

Just like the journey so many of us have taken to more Drs. then we can count, dental care is no different. You really need to be an informed patient, you need to ask the tough questions and advocate for you or your child.


Jenna said...

I am so very sorry to hear this... how very difficult. I truly appreciate the heads up for Matt's teeth, but i am so sorry that the information came at such a high cost.

Anonymous said...

So sorry you're having to deal with this. And thank you for the heads up on this issue. K has some teeth issues, but tooth enamel is not something I ever thought about. And K's body is almost chronically acidic.

Do you think all of the damage is from acidity? I ask because my daughter has something going on with her vitamin D metabolism...has elevations in vitamin D 1,25 D3 that no one can explain (she's milk-free and doesn't supplement D or calcium), along with low bone density and very poor growth...and I think I might remember you saying Abby also had something different about her Vitamin D levels also? Anyway, just a thought that I thought I'd throw out there, since I know that this whole idea of vitamin D metabolism isn't something a dentist or even a doctor might think about. (And even if they do, none of the specialists we've talked with -- even at the NIH -- seem to understand it).


Diane said...

Ah Thanks Jenna! Glad this might help catch things before they are an issue for Matt- hoping he won't have to deal with it though!

Diane said...

Teresa! Thanks for posting!
What we do know is her teeth are clearly demineralizing at a frightening pace..
I know the acidity argument is up in the air.. Holistic medicine recognizes it as a contributing factor, where tradition medicine doesn't. So not sure, what I do know is she is alway very acidic..

Good thoughts on the D.. We are going to do a bone density and see if there are any other issues. We really need to revisit the D issue. It has come up a bit, but not nearly enough. I have read that there are connections between D metabolism and bone issues..

It is not a subject we can find a lot of guidance on for sure- frustrating, Something metabolically I am sure is causing your daughter to be elevated and Abby to be scary low.. and clearly she is on the little side, where I am tall..

Another weird one- her feet have shrank 2 sizes in the past year with consistent weight and fluid control. Not at all sure what that is about! I am wondering if it is tied into the D,mineralization, bone connections though...

IF I find out anything I will post! I suspect we are about to jump feet first into the rabbit hole on this! :-)

thanks for posting!

Nick Dupree said...

I was just tentatively diagnosed with mitochondrial depletion syndrome! now I finally understand why we, me and Abby too, get worse not steadily but in response to illness or crisis

sorry about Abby's teeth.... I have wisdom teeth too, and keeping them


Diane said...

Exactly Nick! Wow, you may have a more definitive diagnosis,finally. ! You and Abby have more in common then ever. It is always assumed if you have a depletion you will not make it out of childhood, and that is not true. With luck and decent health and a lifestyle that protects your body, you can live a long time. Every insult we can protect her body from allows her to maintain. Each insult(allergies,colds,flu's,surgeries etc) her body doesn't have enough "power" to manage. So in theory, if you can just make the bubble wrap thick enough, you stand a good chance at "preserving your current health level" or at least slow things significantly. Unfortunately, because of the low amount of mitochondria there is simply more wear and tear.. we describe Abby's body as getting worn out much faster, so it starts to show damage earlier then a "normal" person with adequate mitochondria. Stay in touch! You are now the oldest depletion patient(childhood onset) that I know! Hugs and thanks for sharing!

Nick Dupree said...

would it be okay if I email you regarding what I've learned?

Diane said...

Nick that would be great!


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