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.

Wednesday, February 29, 2012

New symptom- Neuropathy.

Not sure if it is the Spring weather, my diet, or just good luck, but we have had a "happy" week. Maybe Happy isn't the right word, but feeling grounded and enjoying the small things again. We all feel like the Black Cloud that sat over us all winter is blowing past and blue skies are here again.

That doesn't mean Abby is any better, but I think we just all finally got through the anger,grief,mourning, and all the other emotions that jumped us last year.

I think I realized we are all in a better place when Abby started talking about "pins and needles" in her legs, arms and feet. First, I did not panic. I went back to the "she always has odd symptoms, no worry until it is consistent. Now it has been a few days and still has the pins and needles. Again, no panic. No flying to google it or flipping through Dr. numbers to figure out which one should have a clue and be able to figure it out. We know she has low B levels so the bet is her levels have dropped enough to cause the Neuropathy. Fact is she cannot take it by mouth as it destroys her gut(24 hour of misery from one tiny gummy!) Plus, she has the scope next week, odds are depending on what they find will decide how to get her nutrition back up- then we can decide which Dr. will help her get her B back up. No worries Right?

So much could go wrong, but ya know, I just seem to have a little of my stubborn faith back about this stuff. Abby is a kaleidoscope of odd and rotating symptoms- they come and go. All of them probably mean something but if doesn't cause a trip to the ER it is enough to add to the list on fridge of "Remember to ask at the next Dr. appt." list.

I know I have asked before about B12 deficiency and the claim was she could not be since she was not anemic- Ha- they still don't get that Abby's body doesn't follow any medical guidelines- it is truly almost it's own unique organism and I think of learning the ropes of how to care for Abby, like learning how to care for an alien! :-) Just because her body does things so completely differently then the normal, doesn't mean it is doomed to fail, just means she needs different things to maximize her health.

We are back to the space of " Abby is delicate, different" instead of "Abby's sick." Works much better for all of us, including Abby.

"Different" allows us to creative problem solve, to think outside the box- to use the Motto-Where there is a will, there is a way.
"Sick" is like a brick wall that only Drs. know how to get through-

I like Different and Delicate way better!

Admittedly, I checked out of all the MitoWorld support groups and lists mostly. It is hard to explain but for as lonely as I felt before I found the groups I nearly felt as lonely when participating in the groups. The people are all loving, and kind but my unique perspectives don't really fit. These families often are in the front line of this disease day in and day out. They have dealt with all the bad medicine, many with far more significant disease process, I should feel comfortable, but I did not.

Fact is, I don't like many Drs. Fact is, I don't trust them. Fact is, Drs. see a sick kid when they look at Abby, I just see a high end sports car that needs a little tweaking to keep her running- she is specially made and needs special fuel.. On the days we have all tweaked our little sports car just right, boy does she reward us with a marvelous day of unbelievable performance. But like all high end sports cars, she spends a lot of time in the shop to get those once in a while peak performance days. We are okay with that, in fact I am very proud to be Mom to such a unique kid aka sports car.

Tuesday, February 28, 2012

Mitochondrial Disease Vocab-

More new vocabulary words today.

A few of the Mito Mom's and I have been talking about nutrition and environmental impacts on our Mitochondria.

In the Mito World there is no cure, but they treat the damage and encourage supplements to make the Mitochondria function better.

My thoughts are wandering toward all of the "danger" we expose our Mitochondria to on daily basis. My question has always been, what can I do as a Mom to reduce the risk of making Abby worse? Clearly, we have tinkered with nutrition over the years because of her extreme allergies. If you search the Web, you will find thousands of articles that talk about nutrition and the impacts on our bodies. Lately, the Autism world has been making huge strides on discovering from an elemental level how helpful good nutrition is for their children and I have following their blogs and trying to make sense of their fabulous and deep understanding of how food interacts within our bodies.

Another angle is environmental exposures. Remember BPA? They banned it from baby bottles. Or remember years and year ago when nonstick pans first came out? Those first coatings were found to be dangerous and cancer causing to our bodies.

I know for Abby her Mitochondrial Depletion is genetic. She doesn't have enough mitochondria. However, it appears that the Mitochondria she has is healthy, so what can I do to keep those little energy makers healthy? We have learned that there are medications that are toxic to mitochondria. Wouldn't it be logical to assume the millions of chemicals we bath ourselves in via food,environment etc could be potentially dangerous?

MSG- Acknowledged by the Mito World as BAD for Mito Patients.

Toxic to Mito Medicine- Visit MitoAction to read their long list of medications that Mito patients and suspected Mito patients and even family members should avoid if possible.

OXALATES- newest word in my vocab. Here is a quick link that I found helpful http://www.lowoxalate.info/

SALICYLATE- quick summary http://en.wikipedia.org/wiki/Salicylate_sensitivity

ROTENONE- Dr. Cohen speaks about it and we have heard some Children's hospitals are testing for it. A link-http://en.wikipedia.org/wiki/Rotenone

2,4 D- a product called Speedzone- Kristi at BabyfoodSteps did a great job researching this and many of my other vocab words :-) It is being used heavily in Houston.

RoundUp-talked about this on my blog a few days ago.

Many of these chemicals are often touted as "naturally occurring" and they are, but that doesn't mean they are good for our bodies- Arsenic is naturally occurring- but we know how dangerous that is!

For anyone wanting a more in depth look at these chemicals and the impacts on the body I suggest visiting Kristi at Baby Food Steps She posted an amazing entry yesterday with great links and supporting literature.

Monday, February 27, 2012


The weather has been great outside of Houston.

My family responds strongly to the changing of the seasons. Hands down my favorite is Spring.

Spring Cleaning- something about attacking the dust bunnies and baseboards, touching up paint assessing your nest.

Spring yard cleanup- nothing makes me happier then seeing tidy beds and greening grass. I am hooked on geraniums this last couple years. They are as close to a "sturdy" annual as I have found. I love the annuals but in general they burn up as soon as the summer hits and that will be here in a blink of an eye. My Lantana from last year is waking up and I think I will throw some sage in the beds as well. Of course I am already thinking about how many tomato plants to put in this year. I found a local farm selling heritage tomato plants and in the spirit of avoiding genetically modified species I think I will buy from them this year.

Health- Kind of a catch 22. All of us have hay fever. So I cannot throw up the windows to suck some of that fresh air in the house. What I notice is that all 4 of us and our 2 poodles are constantly finding a reason to grab some sunshine. Nothing makes you feel as alive as getting a good dose of sunshine streaming in the house. A good attitude seems to always make us feel better. Usually, by this time of the year Abby is really dragging after being overtired and sick all year at school, this year without school dragging her down I am hoping she will bounce and enjoy the spring despite the hay fever. This time of year I sorely miss the old medication called Seldane- they pulled it from the market in 1998 and since then I have had no complete relief...

Abby is doing pretty good. The new GI we found made her feel so much more optimistic and "normal". She has tried a few foods she has been avoiding, without success but not without hope. She gives it a couple days and tries another one. Fingers crossed her scope will show something insanely normal and treatable- the GI certainly felt we were on the right track thinking "Horses" before "zebras".

Sunday, February 26, 2012

Amazing MitoAction Social Houston, TX

Unfortunately we were not able to make it to the Mito Social- and I am so disappointed because based on the feedback and photo's it was simply amazing!

Here is a link to see pictures of everyone and read about what a great meeting it was; http://babyfoodsteps.wordpress.com/ (tried to add a link via the blogger but failed, so cut and copy for my readers! :-)

Special thanks to Kristi Wee's for so generously volunteering her spoons to get this first meeting organized!

Thanks to MitoAction and Memorial Hermann Katy hospital for their support.

It is just wonderful to write about something that is positive instead of my normal rants about the dysfunction of the Mito World in Houston!

Saturday, February 25, 2012

Round up and minding your Mitochondria

Read this article this morning- had to after reading the title and it was about one of my favorite yard products.

I have used Round up religiously for years. I for some reason thought it was basically just a form of salt(those assumptions sure bite me !)- and assumed it was safe enough and did a great job killing the weeds.

Does this mean I am going to have to weed by hand again? Not sure I am willing to give up my chemical weeding, but this article is really making me think perhaps it is time I find another, safer way to clear out my flower beds and driveway cracks.

Not that I am blaming it for Mitochondrial Diseases, but could it contribute? Here in Houston a neighborhood is judged on whose beds are without weeds, whose lawns are pure augustine, yards are pristine here where we seek absolute order of our yards and frown at those with uncontrolled dandelions... How many tons of this chemical are used in households just in Houston? Where does our yard run off go to? Should we worry?

Study: Roundup diluted by 99.8 percent still destroys human DNA

Thursday, February 23, 2012 by: Ethan A. Huff, staff writer


(NaturalNews) A new study published in the journal Archives of Toxicology proves once again that there really is no safe level of exposure to Monsanto's Roundup (glyphosate) herbicide formula for genetically-modified organisms (GMOs). According to the new findings, Roundup, which is applied by the tens of thousands of tons a year all around the world, is still toxic to human DNA even when diluted to a mere 0.02 percent of the dilution amount at which it is currently applied to GM food crops.

Numerous studies have already identified the fact that Roundup causes DNA damage, not to mention endocrine disruption and cancer. But this new study, which originates out of the Medical University of Vienna, is one of the first to illustrate Roundup's toxicity at such drastically diluted levels, which is a direct contradiction of the agri-giant's talking points about the supposed safety of Roundup.

"Comparisons with results of earlier studies with lymphocytes and cells from internal organs indicate that epithelial cells are more susceptible to the cytotoxic effects and DNA-damaging properties of the herbicide and its formulation," wrote the authors in their abstract.

"Since we found genotoxic (DNA damaging) effects after short exposure to concentrations that correspond to a 450-fold dilution of spraying used in agriculture, our findings indicate that inhalation may cause DNA damage in exposed individuals."

Interestingly, it is not so much just the glyphosate ingredient in Roundup that is extremely poisonous, as much as it is this chemical's amplified toxicity in the presence of other additives in the formula. Polyoxyethyleneamine, for instance, a surfactant that facilitates glyphosate's absorption into cells, has been found to significantly increase Roundup's synergistic toxicity in humans.

Despite Monsanto's claims to the contrary, Roundup is clearly an exceptionally toxic chemical that has no legitimate place in agriculture. According to data compiled by GreenMedInfo.com, Roundup is linked to causing Non-Hodgkin Lymphoma, imbalanced hormones in children, DNA damage, low testosterone, endocrine disruption, liver cancer, meningitis, infertility, skin cancer, kidney damage, and even uranium poisoning (http://www.greenmedinfo.com/toxic-ingredient/glyphosate).

Environmentally, Roundup is a pervasive threat to air, water, and particularly groundwater and drinking supplies, as studies have shown that it does not effectively biodegrade after being sprayed. Back in the fall, the U.S. Geological Survey (USGS) released data showing that air and water all across America's "bread belt," where much of our nation's food is grown, is highly contaminated with glyphosate (http://www.naturalnews.com/033699_Roundup_pollution.html).

Sources for this article include:


Friday, February 24, 2012

New World of Chemicals-impacts on Mito..

For years farmers have filled their cattle,pigs,chickens with hormones and antibiotics. For years we heated plastics that were likely poisoning us. We know environmental chemicals, pollution are absorbed into our bodies, but why so few studies or tests?

Last night a friend(a good friend!)mentioned Oxalate. I know I had probably read something about it at some point in my reading addiction but could not remember. Turns out it is naturally occurring. Heavy in spinach. In general it is perfectly safe except when your body may not be functioning properly(leaky gut is mentioned). Did you know that kidney stones are 50 percent Oxalate? The things we learn! But, can we translate these bits of information into health through nutrition? I know we cannot cure everything, but surely if you had a history of getting kidney stones wouldn't it be helpful to know which foods were heavy in oxalate- and then with less consumption maybe you would get fewer stones? Sounds logical. The frustrating part is that these logical thoughts on what we eat are not being translated into medical research.

A few links on Oxalates-

Clearly there is a connection that this element can interfere with Mitochondria.. but, with all the Dr.s Abby has seen, I cannot find a test for oxalates in any of her records...

We all know that when we eat food based on our bodies metabolic needs we feel better. No one argues with that(well some do, like the US food pyramid that is making America fat and sick).. it seems like a very easy leap to acknowledge that there are compounds even in our "healthiest" foods that may not be ideal for everyone. For example, my husband does best with very little carbohydrate in his diet. The amount of meat fat he eats literally makes my stomach turn. But, he feels better- no bloating, no GI upset and even his cholesterol levels drop. I run best with more carbohydrate and less fat.

I am hopeful as the study and research into genetics sped up over the next couple years, they will be able to connect the dots. Wouldn't it be just great if they could draw your blood at your yearly physical and be able to set up a diet to fuel your unique body the best? A test that would check for pollution, plastics,metal poisoning,element imbalances.. A quick printout of which foods to avoid and for how long, and which to add and for how long..You could be tested before getting pregnant so you know you are providing the safest environment for your growing baby.

We know so little.

Thursday, February 23, 2012

Dr. Shopping- a No or a Yes?

The term "Dr. Shopping" comes up frequently.

When you have a Dr. you like and trust, you don't need to go further. However, There are good reasons to try another Dr.

1)If you have an undiagnosed disease- 50 percent of the Drs. you see will try to convince you that you are just depressed and pills will fix all. The other 50 percent recognize that there is a disease process and encourage you to hunt for an answer.

2)Personality clash. Fact is, Drs. are humans and their personalities greatly influence how they do medicine. I am noticing that more and more practices are putting up autobiographies or bio's on each Dr. It does help us decide if we might click with a Dr. We are not runners, mountain climbers, and if the Dr. is, they tend to either not understand why we would not embrace their lifestyle, or they judge us- hands down societal boundaries and expectations are not left at the door of a dr. office, no matter how badly we want to believe our Drs. are past that.

3)Busy practice. If you start with a practice and despite really liking a Dr. you find that they are not available when needed or are unorganized and it can take weeks to get a simple prescription filled- probably time to change Drs.

4)Treatment. Today we all google. Many of us go into the Dr. office understanding our disease/issue and what treatments are available. Sometimes as the patient we are anti intervention unless no choice, some of us want the quickest fix, some of us want the newest fix.. As patients we should work harder to trust our Dr.s judgement, but he/she needs to work a little harder to listen to our needs- no two patients are a like.

5)Sub speciality. So you need to see a Neurologist because you have MS. Your internal medicine Dr. gives you a name. You show up to your appointment and this Neurologist doesn't seem to know a lot about MS. IF it is a good Neurologist, he/she will say that though they understand the basics, MS is not their sub speciality but they know a guy who is MS focused. A bad Neurologist will not refer you to someone who has the expertise to help you. Some Neurologists focus on MD, some on Parkinsons, some on Mito... you often can research the Dr. and see if they have a sub speciality or special interest, but sometimes you have to pay for that first appointment to find out. Even within the Mito Specialists they often specialize in different types of Mito. So one Mito Specialist may be most helpful if you have GI issues, where another is more focused on the metabolic aspects. It seems that each year Specialists become more and more specialized in certain aspects of their speciality. Insurance companies do not make the distinction though, and based on some of the referrals we have had from various family and Ped Drs. their local Dr. guide doesn't clarify sub speciality either.

6)The "team" Dr. vs the "independent". Some Drs. rely very heavily on their team. If you see Drs. from various Teams it can be a problem. When you have a rare or complex disease and personality to boot, it can be difficult getting a specialist to feel comfortable working with drs. from other Teams. Just like a strong office, these specialists develop strong working relationships, communication and methods. It works for them and makes them better Drs. But, if you take their team away, it increases their work load since they will have to reach outside their team and develop new relationships- I am more of the type of person that though I love my "team" I enjoy getting to know other teams- new teams offer new ideas and methods which make me wiser. However, not all people are programmed that way.

7)Sometimes good medicine is good medicine. You might hate the Drs. personality, but hands down they are brilliant. I find these type of Drs. tend to fall into the Diagnostic Medicine world- they are happiest hunting down the issues and giving you to someone else for treatment and follow up- this works for me. Sometimes though, they despite having no personality want to continue to treat or follow up(usually from an academic perspective)and usually that triggers Dr. shopping for me! :-)

8) There a few reasons that Dr. Shopping is universally bad. If you are shopping to find a dr. to give you drugs that you have an addiction to or are not healthy for your body. If you are needing attention and actually enjoy the medical drama(yep, I know people who go for every little bit of snot)...

9) I also understand that some diseases are hard to diagnose and sometimes a Dr. has to see a pattern. It would not matter who you saw, they would all need multiple appointments to get enough clinical data to make a diagnosis-again another good reason not to Dr. Shop.

10) At the end of the day, you are the one living with an illness or disease. You are paying for the time spent with Dr. If you are not getting the care you are paying for- find a new Dr. I think you are doing the Dr. a favor too- they probably are well aware that you don't trust them or are not happy with their style,method etc- leaving their practice opens a slot for a patient who would benefit more from his or her time.

11) I wish there were better directories for patients looking for the "right" fit. Specialists need to have their sub speciality posted right next to their speciality instead of buried in their bio's. Insurance companies need to post Specialists sub specialities- it would save them a lot of money if we did not have to try a few different specialists to get to the 1 that can actually help us. All Drs. should have a bio posted that we don't have to dig the internet to find. I would also love to see average times for how long it takes to get in for the first appointment(Texas Children's can take in excess of 6 months if they do not feel you are an emergency)even if you are urgent it can still take 2 months. There are a lot of things Drs. could do to make sure they get the patients they are best trained to see- and it would save me and my insurance company a lot of time and money.

Wednesday, February 22, 2012

The case of Landon Weber,was it Mito?-more questions then answers.

I doubt there are many Mito parents out there that haven't heard about CPS involvement in children with Mito.

A blog I read a few days ago from a few years ago commented that at the time(2009?)up 1/3 of children with Mitochondrial Disease had been reported to CPS.

In the last 5 years Texas CPS has developed a bad reputation for hurrying to terminate parental rights, ignoring the courts, ignoring their own reunification plans and more- Do you remember the big polygamy ranch bust? They spent MILLIONS tearing children from families based on a single phone call- after months and months they were unable to prove any abuse in nearly all of the cases and the children were given back, but CPS was planning to monitor them closely. Some of this is very concerning to me. From a pure constitutional standpoint, it is chipping away at parental rights. The secrecy and shame involved with CPS that is not healthy for the children or families- it breds more dysfunction. The foster care system is dysfunctional and statistics show some insane percent like 70(digging through my cobweb mind for that, will have to fact check)end up not attending college, depending on the government, and often become criminals.

Last night I read article after article about the terror and outrage many in Texas feel toward CPS. The sheer number of blogs,news articles , parent advocates,associations all talking about the aggressive and often harmful actions of CPS really took my breath away. I was terribly disheartened. CPS should be a terrific support system that help our Texas families become stronger. That help families be better families for our children.

A blogger wrote that Memorial Hermann and Texas Children's have something they called "CPS Squads". Staff who's purpose is only to look for child abuse within all the children served at their hospital- again- I find it disturbing if this is true.

So, in the Mito World CPS has been such a damaging element that the Associations have actually held webinars to help parents understand why they are being labeled and how to avoid it.

When we first found out that Abby had a Depletion the first thing I did was google. I remember one of the first Mito Articles I found in Houston was the Landon Webber case. He saw our only local Mito Specialist. Many invasive treatments were ordered and it appeared Landon was a very sick little one. Texas Children's supposedly reported the Mom and CPS quickly blocked her access. I guess when he still wasn't getting better they blocked access to the grandparent's too. From all accounts, it doesn't sound like CPS worked to reunify the family or had any intention.

I have no idea if the family was only doing what the Dr said, or if they were truly trying to help their child, or if they were abusing him- unfortunately that was left to CPS and courts to figure out.

Here is the first newspaper story from 2010-CPS Does About Face, Accuses Parents Of Abuse
Updated: Tuesday, 30 Mar 2010, 10:24 PM CDT
Published : Tuesday, 30 Mar 2010, 10:24 PM CDT

Investigative Reporter
HOUSTON - Landon Weber, 4, is one of two little boys that FOX 26 Investigates presented that have spent alot of time in hospitals. The mothers of both little boys were under investigation by Childrens Protective Services for medical child abuse.

"That happens when for one reason or another the medical system is used to perpetrate physical abuse on the child," said Valerie Brock, an assistant County Attorney representing CPS.

While both cases are ongoing, FOX 26 has a dramatic development when it comes to little Landon.
His mother, as well as some doctors, say Landon has a rare disorder called Mitochondrial disease. Some studies claim the symptoms of that disease can cause false allegations of medical child abuse to be lodged against parents.

Two months ago this is what CPS had to say about Landon's mother: "She's having to care for a child who has a lot of medical needs. he's medically fragile the family just needs training," CPS's Estella Oguin told FOX 26 Investigates.

But now CPS believes the exact opposite -- that Landon Weber is the victim of medical child abuse.

"I think we all were a little surprised," said Brock.

CPS had an independent medical evaluation done on Landon. Just days ago, that doctor testified in court, Landon has no medical condition whatsoever. His problems are because of his mother.

"I think that given the findings that we have that the parents have been involved in some medical child abuse," said Brock.

"I'm horrified," said Landon's mother Jennifer Weber.

The court testimony accusing Landon's parents and even possibly his grandparents of causing his medical problems came as a shock to the Webers.

"It's about the worst thing you could have to do as a parent," that's how Landon's father James Weber described listening to the court testimony.

Landon has feeding and ostomy bags attached to his body.

"His digestive system has been described as dysfunctional," Brock said.

The doctor hired by CPS testified those bags had an unknown substance in them that could cause infections.

"They were not able to find out exactly what was in the bags," Brock said. "Still it was kind of a suspicious and concerning circumstance."

The judge granted CPS's request that Landon's parents and even his grandparents have absolutely no contact with him not even supervised visits.

"It's crazy, this is not justice", Charles Weber, Landon's grandfather said.

Charles Weber said cops ordered his wife out of Landon's hospital room.

"About 5 minutes after the court hearing a police officer escorts her out of the room and takes her out of the building," the distraught grandfather said. "that's ridiculous."

"The frustrating thing is CPS isn't doing it's job," the Weber's attorney Chris Branson said.
Branson accuses CPS of ignoring doctors who say Landon is really sick.

"So they not only want to take the child away from the parents and grandparents they appear to want to put the parents in jail as well," Branson said.

CPS's next move, terminating the Weber's parental rights.

"I'm extremely concerned especially since we have'nt done anything to harm him," Landon's father said.

"It's a terrible thing that's happening and it needs to be stopped," Landon's mother said.

While CPS insists there is nothing physically wrong with Landon, his parents say they will do what they've been doing for 6 months. They will fight.

Here is an article talking about how his Mito Dr. and her nurse actually went with Landon's family for make a wish-Texas CPS Kidnaps Disabled Child, Denies Medical Treatment – Landon Weber
Comparte tus ideas en el FORO ENARM
March 30, 2010 Fox26 Houston. www.myfoxhouston.com More information on little Landon . — Make-A-Wish provides trip for Landon Weber. It’s been rare for 3-year-old Landon Weber to leave Children’s Memorial Hermann Hospital during the last six months. Landon, who has mitochondrial disease, left Jan. 17 on the trip through the Make-A-Wish Foundation, the national, nonprofit organization that grants wishes to children with life-threatening diseases. Landon is traveling with his mom Jennifer, dad James, and brothers Braden and Tyler, 5 and 9, along with his physician, mitochondrial disease specialist Dr. Mary Kay Koenig, and Children’s Memorial Hermann Hospital nurse LaKeesha Minor. The trip is an important chance for the Weber family to be together. They moved from St. Louis to Katy last summer so Landon could be treated by Koenig, an assistant professor of pediatric neurology at The University of Texas Medical School at Houston and director of The University of Texas Neurometabolic & Mitochondrial Clinic. Koenig, who also is a pediatric neurologist at Children’s Memorial Hermann Hospital, is one of only a handful of physicians across the United States who specialize in mitochondrial disease. There is no cure.. . . More on link. www.chron.com Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body …

And finally the latest on the case-eff McShan / KHOU 11 News
Posted on February 13, 2012 at 11:43 PM
Updated Tuesday, Feb 14 at 11:32 AM
HOUSTON – A 7-year-old boy whose parents are accused of medical abuse was placed with a new family Monday in a Houston courtroom.
From the moment Landon Weber was born, his mother said he was very sick. At the age of two, Landon was on oxygen and had to be fed through a tube. He was diagnosed with a rare lung disease.
For years, Landon’s mother and father took him from doctor to doctor, seeking treatment for a serious illness. The Make a Wish Foundation, thinking he was dying, even sent him to Disney World.
Landon was constantly in and out of hospitals in three different states. But now, investigators say the child was never really sick.
Houston doctors began closely looking at Landon’s medical history and comparing notes. That’s when they noticed there were a lot of inconsistencies. It appeared the parents were making up his illnesses to look like heroes. It’s known as Munchausen by proxy.
“You know Munchausen isn’t formally defined. We worked with it as a medical child-abuse case,” said Valerie Brock. She was the court’s chief prosecutor when the investigation began.
“He had unnecessary surgeries, countless small things like being stuck with a needle,” she said.
Judge John Phillips appointed a group of experts to find the truth.
The Webers, who are still under investigation, had their parental rights taken away, and on Monday, Landon -- represented by ad-litem attorney Michael Craig -- was given a new mom and dad.

Did you notice? First he had Mito, then the CPS Drs. said nothing at all was wrong with him, and the end that he had lung disease? The last story did not even sound like they were talking about the same family.

Now if this was just one case in the Mito World, we would feel bad and move on, but it is one of many. As a parent who is struggling to just accept Mito is the diagnosis for her daughter(proven by genetics via biopsy)- these frequent stories of Drs,CPS feeling a Mito diagnosis is a symptom of abuse leave me fighting the diagnosis even harder. We know something is very wrong with Abby- but how could a disease that is often investigated by CPS, Drs. who order treatments but according to CPS were manipulated, be real? The fact that CPS may have squads sifting through medical records of children at TCH or Memorial Hermann is enough to make anyone with a child think twice. After reading all of this, I understand why Mito Drs. are not giving a Mito diagnosis without a firm Genetic connection- to protect themselves, their patients and the integrity of research.

I have not fact checked anything here- just cut and copied. I wish I knew what the truth was, but I am left wondering.

Can CPS ever be trusted? Can Dr.s be trusted to know when a treatment is needed or not? Can Drs. diagnosis of Mito be trusted? Do the hospitals actually have staff hired to sift through records hunting for any abnormal or rare symptom that just because it is not "standard" might be abuse? Is child abuse higher in the Mito world? Should you move to another state if you have a chronically ill child? Who do you trust?

Here is the link to the blog that talks about CPS at the hospitals. http://www.houstontexascpslawyer.com/blog/2010/08/20/attorney-ad-litem/

Tuesday, February 21, 2012

back down the hill....

Not that we aren't still hopeful, but Abby's stomach has been really bothering her again. Her proteinuria is back off the chart.

She did run around more then she has in months this weekend, so we are keeping our fingers crossed with some rest she will start bouncing again.

A little concerned though- she has been have night sweats this past 3-4 days.. no fever, not hormone related(based on week of the month) so not exactly sure what is causing it, again just crossing our fingers it will just go away without having to make yet another trip to the Dr. to likely hearing them say, "Gee, we don't know what is causing this!"

The Sun is out today here in Houston and it feels wonderful! I think my afternoon will be pulling the zillion weeds from my flowerbeds- which of course is a perfect excuse to get some sun therapy.

At my Husband's office the flu is going around- just great! So he may get the Lysol treatment after work for awhile- the last thing we need around here is the flu..

Monday, February 20, 2012

Favorite Quotes

We are what we repeatedly do.


Be the change you want to see in the world.

Mahatma Gandhi

Self-respect is the fruit of discipline: the sense of dignity grows with the ability to say no to oneself.
Abraham J. Heschel

To keep a lamp burning, we have to keep putting oil in it.
Mother Teresa

It's easier to go down a hill than up it but the view is much better at the top.

Henry Ward Beecher

You were born to be an original. Don’t die a copy.

John Mason

Sunday, February 19, 2012


Do I dare hope that Abby might be actually getting better?

We are past the one week point with the Elecare. It was a rough start, but by yesterday she said her body was "craving" the elecare.. This morning is one I don't think I will forget any time soon.

She came out this morning to greet me as usual, and maybe it was just me but there was a MARKED difference. The face was not as drawn, her body moved more smoothly, her eyes had some sparkle and she had volume and tone to her voice. She said she felt more like herself and had not realized how shutdown she had felt before. Her kidney proteins are dropping daily, she said the pain in her kidneys is down to a very low level..her stomach doesn't hurt as badly. She said she feels more herself and has a little kick. One week has not erased the pain and illness from her body, but either she is on a little bounce or the Elecare is worth its weight in gold.

I have always believed that her Allergies were key to all of this...This last month I was ready to surrender, to watch this depletion take over- but not after this morning.

Could a container of powdered food really be the key? Don't get me wrong, I have no illusions that this is a "cure", but is it possible it might take us back to Abby the "sensitive" instead of Abby the "sick?"

We all agree with Mito that it is important to fine tune each body system. If one body system is damaged, it does tend to wreck havoc in another.. Could this really scary year be over? Could "food" yet again be our enemy and our hope?

It is hard not to hope. Even if the Elecare is helping, the fact that she needs the Elecare at all clearly defines we have an issue. However, finally a tool to work with... now for patience.

This morning as I putter around the house, I cannot help but visualize her back in College. I keep telling myself not to get too hopeful, because when the crash comes we will all be heartbroken. I just cannot help myself.

Thinking I really should start taking a pic each day- the changes in her from last week until now have been quite remarkable.

Friday, February 17, 2012

Stepping back a Notch.

It is becoming clear to us we have two paths. 1) We can enter the world of Mito Drs. and generally a more aggressive treatment style. 2)Or stick to what we have always done and consult now and then with a Mito Dr. to avoid some fumbles.

Yesterday Abby looked the best she has looked in months. The feelings it inspired in me were frightening. I was able to believe for longer then a minute that somehow she was diagnosed wrong, and that whatever plagued her is over, done and gone. You would think a year of watching her crash, the Dr. visits, would have allowed me to fully accept that she has a major disease that at any point could overwhelm her.

By the afternoon, I realized my emotions were probably off base, just a tiny bit! :-)

What it did do is force me to recognize since finding out about this diagnosis, we only allow ourselves to live after I see her face in the morning and am reassured nothing is worse. This has been going on for months and I am tired of obsessing.

The ups and downs in her health are the worst part. Just when I have prepared myself that things are getting bad, she perks up. Granted each one of these cycles of being really sick seem to last longer and do more damage each time- but as we have seen this week she is still able to "come out of it" despite the longer periods of flare. I also recognize that she seems to only stay out of a flare for a few short sweet days, and maybe weeks before nose diving again..but I am still hoping we can head back to the cycle of a few bad weeks followed by months of balance..instead of days.

Admittedly the one aspect that drives me batty about this disease is not knowing enough about it. If it weren't for the other Mito parents I doubt I would even know how to spell Mito yet! LOL I am kind of a of a big picture kind of person, and so far there is no big picture for Abby.

What I have learned is that we could do some interventions. Or we can chose to avoid them. I hate to say it, but when I look at the kids who have had the interventions they don't always work to stop progression. Actually, a lot of the time they don't. So why do them? I know for some it is a life or death thing, or worth trying and we may reach that point with Abby, but not yet.

This last flare taught me a lot. 1)Her flares are getting longer and worse. 2)she gets some new issues with each flare. This round was the GI(we still suspect pancreas despite Drs. disagreeing and thinking more "mito"), we see the intention tremors(I have had since I was 14 and no harm no foul), and we find that when she flares all her other issues are much worse. 3) We still do not know what it is that stops a flare and stabilizes her.

I also learned that she may be great today, and crashing hard next week. Each cycle the damage becomes more dramatic,thus weakening her further and when the next flare hits her body just gets more and more beaten down..

If even changing brands of a vitamin can cause a crash in Abby, what would be the impact of some of the dramatic interventions? Despite helping in one area I know they would cause harm in another. The intention is good, but the impact is not being considered.

At the end of the day, I am not ready to head down the aggressive Mito path with her, and neither is she. We are going to hold on to our placebo methods for as long as humanly possible. If the Dr.s Denial of anything wrong with Abby for years and years forced us to figure her out on our own all these years, then surely our methods are as good as theirs and will carry her a little bit longer.

What do you want to bet, sooner then I would like to admit, I will writing on this blog that she is flared up again, and I have changed my mind again and see it is time for intervention. But for today- less is more.

This disease is like owning beach front property. The ocean is your foe and the whole reason you live on the Beach. Every year you watch the tides eat away at your property. You dump pilings,concrete,sand in front of your property and then watch over the next year as the tides slowly steal that work away.. Year after year you continue to build the barriers. You read books about building barriers,you consult with neighbors, engineers,you start saving all your money on things to block the ocean-your days and nights are consumed with beating back the tides. You pay more in taxes each year for less beach..but after a few years your realize you cannot fight the ocean,tides, gravity.. Mother Nature ALWAYS wins. You can chose to appreciate the beauty that drew you there and accept the price or you can spend all your time trying to engineer the blockage of pilings to protect what is yours.. I think the smartest of us put up the pilings each year but don't get to upset when the ocean has a greedy year.. you just accept that the ocean is bigger then you and work with what is left. You enjoy what you have and hope that some smart engineer will figure out how to build a tide proof barrier one day that will protect what is yours.

Wednesday, February 15, 2012

Mito Social and Jeans for Genes!

Jeans for Genes is coming up Feb. 29. Thank you Moody for participating!

The first EVER Mito Social Katy TX is happening in less then 2 weeks! A wonderful way to meet other Mito families in your community. Memorial Hermann has been gracious to give the Mito Social(MitoAction)space, and snacks- I am very much looking forward to meeting everyone! I know we have had some opportunities to meet Houston families via the UMDF meetings, but unfortunately they have been either weekdays or evenings- a Saturday is perfect! If you are suspected, diagnosed, adult,child, patient or parent, everyone is welcome!

Mito Patient & Family Socials

Mito Patient & Family Socials offer a free and fun opportunity for patients & families to connect in person.

We have heard many people express their desire to meet other Mito families in their communities. Our Mito Patient & Family Socials can help you make those connections. These low-key, relaxed gatherings allow Mito families to meet each other, share stories, give and get support, and realize they’re not alone on this difficult journey. We want to help you get support closer to home, and are hopeful that a Mito Social will offer just that. Consider hosting or attending a Social!

Upcoming Mito Socials

(RSVP to support@mitoaction.org)

Saturday, Feb. 25, 2012: Memorial Hermann Hospital, 23900 Katy Freeway (I-10), Tiger Room A&B, Katy, Texas. Hosted by Kristi Wees

Tuesday, February 14, 2012

Deletions,Depletions,Replication,dysfunction, Respiratory Complex...

Very easy to be confused by the terminology, but more then that I am confused by this disease period.

If you are diagnosed with cancer there is a clear and precise process. 1)where is the cancer? 2)what type of cancer? 3)Staging 4)which treatments? I love the MD Anderson commercial where the woman talks about not having an expiration date on her body, very true that often it is impossible to predict outcomes..but, easier to predict an outcome with cancer then with Mito.

With Mito there is no book, no process and few guidelines. There are gobs of Drs. that either don't know what it is, don't believe it is real, or don't understand the huge variables.

Abby is lucky. Or has been lucky. Despite the various issues none were critical that forced a diagnosis over the years- it sure would have been helpful to know what was wrong with Abby all these years, but clearly it would not have changed the outcome of where we are at today.

Right now though, we feel like we are at one of the biggest crossroads in Abby's care we will potentially ever face. Like a Chess game that depending on each move could change the outcome for Abby 10 years from now. Each sip of an elemental formula, each prescription and test is one more move on the that medical chess board. I have never felt such pressure as I do today when it comes to making decisions for Abby's care. It was easier before we knew the diagnosis- we did what we had to find out what she had- okay, so it wasn't easy, but we had a very clear objective. So now we know. She has a Depletion. But, there are no guidelines, no set path, no process, each patient follows their own very different path. Some would argue that for all patients it is about energy, but that is way too vague to base any decisions on.

I have been consulting with my brilliant Mito Moms, her Drs., our friends and our family trying to decide "What is the next step?"

Clearly we need to know the condition of her stomach, and status of her GI issues- but since she has been eating better(admittedly not even close to ideal,but at least eating)I find myself wanting to plug my ears and say, "see, we are working into a bounce, nothing to worry about that a little more time won't fix." I think the term is "Denial" or is it? Because we don't know jack about Mito it is still very possible that her GI stuff may never get any worse from this day forward- but then again, because we don't know, it might and is assumed could get worse as well.

The Elecare is going okay- not perfect and I get the feeling though Abby's gut is kind of okay with it, her metabolic response is not looking promising. I know I really really need to quit looking at just today and try to look at year from now and today. Yet I don't have any percentiles,statics,no great "Mito" centers like cancer patients have, we would have to fly all over the Country to hear what I already know- which is there is simply no way to guess what we may or may not need to do for Abby.

A few years back we went to Oregon to visit my husbands family. His Dad took us to visit his Aunt who was dying from Huntingtons. She was a younger lady I think around 40-45? But what we saw was a skeleton barely clinging to life. They had put a feeding tube in the year before...at first I could not tell if she knew my husband but she seemed to recognize him. He went to hug her and she begged him to help her because she hurt.. she kept moaning about hurting.. That was her life.. for months and months.. never leaving that bed and just wanting help for the pain.

Now, I know that is not the path for Abby, but I have a number of family members I have watched slowly get eaten by cancer of one variety or another.. again, I know this isn't what is in store for Abby.. but the feeling of watching your life trickle through your fingers- that is sure the same, yet with Mito there is a possibility of an unexpected "bounce"..or at least a lengthy stabilization.. more questions then answers.

What is in store? A bounce? Stabilizing? Maybe a clinical trial that stops it? A tube? Life support? Maybe back to college? How do you plan for a disease like that?

My job as her Mom has been to give her the skills to plan her life, to give her the tools to create her path and find happiness. For me this has meant creating deep bonds in our immediate family, we depend on each other deeply. It has been about enforcing the importance of a higher education, and mostly that they find happiness. To feel strong about the decisions she makes for herself, to think before acting.. yet, here I am trying to face her disease with no facts, no stats, no tools, no skills to know how to wrestle and win. There are no tools for this...

Abby should not have to make any decisions yet- it is my job, but last night I found myself wishing someone else could do it. Or if we could just have another bounce that would hold her for about 10 years until maybe the Mito Specialists know enough to be able to provide a path and choices like that which are laid out for other diseases. I wish I could just trust a few Dr.s and have enough faith to let them decide when and what needs to be done. Unfortunately, Mito cuts none of us any slack. I suspect from now on our path has changed. For years the path was "Get the diagnosis" I thought it was the hardest thing I had ever done. Now I find myself on the second leg of the journey, which is "Pick a treatment"...and I just realized that this is as bad as the first part.

Today I am just pulling for a bounce- tomorrow is soon enough to plan the next move on chess board.

Monday, February 13, 2012

Day 3 on Elecare

Last night we had a little hope. Abby got groggy after the Elecare serving, but about an hour later she was a regular motor mouth! It was lovely to see her a little bouncy.

It does seem to irritate her stomach more so then I would like to see, but I am wondering if it is the corn syrup?

Why is it that we all know that sugar is not the best thing for kids, and these toddler/children elemental formula's all have corn syrup or sugar of some sort as the FIRST INGREDIENT?? Yes, I know many kids need the calories, but really, empty calories?

We are going to try the unflavored and flavor it ourselves, that might reduce the stomach pain if it is a corn reaction.

Sunday, February 12, 2012

Not bad.......

Abby always surprises me. I thought for sure she would be at her very worst after all the travel this week, not that she is doing great, but she is doing pretty good!

I am breathing a lot more about the GI stuff. But then, she seems to be eating better. We finally tried the Elecare last night- so far so good though the stuff is insanely sweet and we will need to water it down if her body continues to tolerate it. I have to admit, if she could handle just a little bit of this stuff everyday, we would feel better.

My "gut" says always lean toward less is more with Abby-

No great interesting topics(or weird ones!) today. Just checking in.

Friday, February 10, 2012

Mito Vocab

Within every culture and community we develop language to best describe the unique details that are unique to our community or culture-

For example, a few of my 3rd cousins (or similar relationship)said to us, "grind and grease" with a heavy accent mind you.

They grew up in East Texas where life revolved around fishing,hunting and what the land provides-and trying to make the dollar spread as far as it would go.

Grind and Grease- What that means is to batter catfish in cornmeal(grind refers to the grinding of corn)and grease means to fry it.

In the Mito World our culture is rapidly developing language that has it's own definitive meaning.

Bounce- With many Mitochondrial diseases a cold, the wrong food, wrong temperature, can cause a "flare" in symptoms. We can watch our child's symptoms intensify and watch the disease appear to progress rapidly. "Bounce" refers to a flare or progression that is temporary in nature. We all hope for the bounce.

Baseline- a certain spot in the disease process where there is no progression, where we all recognize where he/she is at in the disease process and it makes it easier to recognize any changes if we know their baseline.

Stabilize- During a flare, we have to sit back and often watch progression. If there is no "Bounce", and no absolute halt in symptoms that we can call a baseline, we say we are waiting for them stabilize. Stabilize seems to describe a clear picture of where they are at in their active progression.

We all want a Bounce! We all like to know our child's baseline as it identifies when progression is occurring. If our child is in a flare, we watch and wait- we hope first for them to stabilize and then for a point where we can identify the "new" baseline.

In the Mito World from a purely Anthropological standpoint, the speed within which our group of people are defining and developing new cultural and community traditions,language and behaviors is impressive. 20 years ago, I don't think it would have happened. What we are witnessing and participating in is culture mets technology.

When I find a few more "new" words I will post.

Thursday, February 9, 2012

Curse of the Gypsy Polish Woman

Each family has their inside jokes and fables, but usually they are based on some facts.

In my family, we tease and joke about being Gypsy Polish women.

My Great Grandmother followed her husband here from Poland. They came through Ellis Island and in order to afford to make a new life here in America were forced to leave their oldest child behind in Poland. Like many they could not afford much in Brooklyn and lived with the bare basics. They embraced their catholic faith and produced child after child after child. Somewhere between 11-14 children. Some died at birth which was typical of the times. She was from what I understand who "wore pants in the family" and all of us since tend to be as strong willed. My grandmother, her daughter told us fabulous stories about growing up so poor in Brooklyn- stories that have shaped who I am. Apparently, my Great Grandmother was tough- really tough. My Uncle told me that years later when my grandmother had grown and my Great Grandmother lived with them, they all moved to Texas . Apparently, my Great Grandmother was bitten by a rattle snake. She calmly wrapped it up and disappeared to her room and rocker. Her leg swelled to enormous proportions and it was clear she was violently ill- she threw everyone out of her room. 3 days later she appeared quite restored and ready to work around the farm again. This is one of many stories of her ability to overcome.

Her daughter my grandmother was apparently the runt of that enormous litter of children. She was born with spinal bifida- and way way back then was one of the first successful cases where they closed it and she maintained her ability to walk. She also a few years later had a huge swelling on her neck and they removed bone,skin, hair- very much like what we would refer to today as an absorbed twin fetus- She by her 60's had fought cancer a few times, had a 90 degree curve of scoliosis/ and kyphosis. She had organs that were not in the right spot..She was in so many ways the toughest old lady. I remember playing on the floor with her and at 75 years old she could criss cross her legs yoga style.. do the splits! She amazed me. Out of all her siblings she was the sickest and she lived the longest- many died in their 20's and only 3 made it past 60.

Her daughter my Mother was also uniquely tough. A year before my Mom was diagnosed with cancer(age 55ish) she had a 25 foot Maple tree in her yard and she did not like where it was planted- so she moved it. Yep, she spent a week digging all night long(was too hot during the day)dug the massive root ball out, rolled it on to a tarp and dragged it to it's new location in her yard. The tree lived and did fine. My Mother frequently would impress me as a child with her ability to focus her mind on the most impossible tasks and she would do it- Nothing stopped my Mom when she was on a mission.

I in turn have shared these stories with my daughters who are now the youngest gypsy Polish women. Sounds pretty neat, who doesn't want such neat ancestors, these ladies were smart, determined and unbelievably hardy.

The curse is, for all that courage and strength, comes a heavy dose of weirdness. My Great grandmother lived for codeine and booze. I remember a story that later in life my grandfather had to go fetch her from jail for public drunkenness. She was a woman who still believed in folklore and we actually still have the crow she mummified and made clothes for to protect my Mother from it.(if you walk and cross by a freshly dead black bird she felt it meant an early death, so by treating the bird as if it were blessed and alive it might prevent the early demise). For despite her moments of magnificent strength and endurance came long periods of darkness, illness and fatigue.

My grandmother's curse was that she was not emotionally stable. Not in a bad way as she got older, harmless I would call it. I loved her as a child and she had a child like quality that made her our favorite. But she was a hermit and often did not feel well and self treated with sugar and booze.

Then my Mother- my Mom was smart, very very smart. She also believed in aliens, in multiple lives, strange mix. She also was incredibly likable when she was well. She spent years drinking- she raged. She was not exactly the warm and fuzzy type. The older she got the weirder she got and the more she hid at home, like her Mother and her Grandmother.

Now to me. I have my gifts- and despite my lack of interest in academics my IQ was high enough to shock my family. I am determined like the women in my family before me. Trying analyze myself is tough but I have some of the physical strength of the women before me, some odd health issues, and I have the curse- I am a little colorful. I get more colorful as I age, and more aware that I have not escaped the curse. My addiction issues thankfully are not booze or drugs but I still have a few.. At this point in my life I know what is coming. All the stories that have been shared have in many ways foretold my future. Will my hubby love me still 20 years from now when I become the neighborhood cat lady?

Sara and Abby are exceptional- their IQ tests both indicated exceptional(beyond genius)levels. They have some odd health problems and now we have finally found a Mitochondrial depletion in Abby- they too have inherited the curse.

As we are learning about Mitochondrial Disease I have to wonder about this folklore, could the curse possibly be Mito that has been passed down to all the women? . All these women who had odd fatigue, history of addiction, amazing strength, multiple illnesses and life threatening disease..and eccentricity. Could it be genetic? As the researchers feverishly study Mitochondria and their secrets are learned they are finding huge connections. To autism,mental illness,all sorts of neurological diseases,vision, hearing.. the list is ENDLESS. Could it be that our Polish gypsy curse is just genetics? The folklore in my family is the story of our genetic blueprints- it brings great gifts and handicaps. Sara and Abby understand the risks of passing this genetic blueprint on.. we may be the end of the curse.

Wednesday, February 8, 2012

Long day...

Flying back and forth to Atlanta was a long long day.

1) The TSA at Atlanta and at Hobby in Houston were terrific. I had been dreading dealing with flying with concern about the TSA. However, it was a breeze, the TSA employees were polite and kind.

2)Delta airlines gets a thumbs up! It is the first time we have traveled with a wheelchair, and not only did they have it down where Abby did not have to worry, they were delightful. We have flown continental airlines almost exclusively. I had heard Delta was lacking in customer care, but, I gotta say, I have never met so many employees that were so equally organized,cheerful and professional! Go Delta!

3)I think it is finally sinking in that a depletion is a depletion is a depletion. That there may be other health issues that pop up, but at the root of the majority of it, is the depletion. I think we have all been hoping it was a mistake, or secondary that something else will pop that is to blame for all the other issues and the depletion is just something that is there but not the cause of all the troubles. Reality stinks.

4)A good Dr. is worth more then a million bucks. Abby's Mito Specialist has this magic way of talking Abby and I off the roof. For so many years Drs. minimized Abby's symptoms to the point that I constantly felt so lost it is no wonder it has taken us so long to trust the Drs. Abby has right now- in the past the various Drs. we took Abby to did not know so therefore it did not exist.. Having someone who listens,who knows more then we do, and has the experience to help Abby be as healthy as possible is priceless.

5)Hertz gold members for car rentals is the best. Great car,warmed up and waiting for us to help ourselves, and when we returned the car they gave us a ride to our gate(Atlanta airport is MASSIVE, they saved us a least 30 minutes of hiking around).

We can chose to focus on the negatives, or to look for the good stuff.

Monday, February 6, 2012

1 baby 3 parents..

Scientists want kids with three parents to help eradicate genetic disease

SYDNEY scientists want to create designer babies with the DNA of three parents to prevent children inheriting life-threatening diseases.

IVF specialists argue they could eradicate mitochondrial mutations - which can cause multi-organ failure and fatal heart, liver and muscle conditions - by removing defective genes and replacing them with healthy DNA from a donor.

The procedure, described by scientific opponents as "fraught with danger", would ensure women with the severe genetic condition do not pass it on to their children.

"This would mean we are using the genes of three parents," IVF Australia's Professor Peter Illingworth told The Sunday Telegraph.

But Professor Illingworth defended the procedure, saying it was "not properly understood" and "would not affect the child's genetic make-up".

Read full story at; http://www.dailytelegraph.com.au/news/scientists-want-kids-with-three-parents/comments-e6freuy9-1226262783608

My question is, can we step past the moral issues to make this a reality?

I am admittedly conservative in some of my views. I stopped and thought about this for a moment- if I had been told Abby would get this Mito, and if I let them engineer the fetus we could avoid Mito, I may feel uncomfortable about a child that is not just mine and Derek's, but to get rid of Mito? Without question we would have done it.

The issue is the temptation to play god. I mean if I have 3 parents to pick genes from, don't you think folks will be wondering if they get a choice of hair color,skin, height, intelligence, life span... and if they can eliminate genetic disorders then those with means to afford this procedure would have the healthiest and longest living children, while those without money would have reproduce the old fashioned way and continue passing on "flawed" genetics..

Where is the line? Should there be one? Who decides where the line should be?

Saturday, February 4, 2012

To be a fly on the wall....

My latest internet addiction is reading Dr. blogs. I prefer the anonymous blogs, they seem to feel more comfortable to express, not their "Dr Persona" but their human side. Over the years I have often been puzzled by Dr. behavior, so finding a treasure trove of blogs to read felt like winning the lottery!

1)Everyone poops. They actually have all the human characteristics the rest of have. From honesty to narcissism they aren't immune.

2) After reading about 25 blogs- I have discovered that odds are at some point one of your Dr.s does judge you! Sometimes the judgement is in honest hope that you will live a lifestyle that is gentler on your body, but they judge us on a personal level too! The whole personal level judgement kind of throws me because as a patient I don't judge them on a "personal level" but I do judge their ability to quickly process data, whether they talk to me while typing on their phones, or writing vigorously in their charts,whether they appear to recognize the medical issue and whether they are prepared to move forward. Apparently, from our weight to our level of education and at times our politics can be discussed as long as it is done privately.(not sure an anonymous blog online is private but..)

What really stood out, was that Drs. seem to really respect their colleagues who "think outside the box" where they become very frustrated by patients that think outside the box... hummmm The term "non-compliant" was generously used.

3)Based on the blogs I have read, more seem more comfortable identifying themselves as democrats/liberals/progressives(could that be why I clash with so many??? :-)vs conservative, repub or libertarian- maybe conservatives are more conservative about sharing personal data?

4)Drs. in Seattle love to blog! A lot Dr. blogs up there. Some are very personal, some are just repeating what the FDA, and the Medical Association tells them to think.. and a few are good rants! A few I really appreciate because they are honest and show their "human" side and how it affects their doctoring- I found myself sympathizing for Drs. instead of my normal defensive posture.

5)When it comes to vaccines, many are as confused as we are. Surprisingly, most(keep in mind mostly Seattle blogs)are open to delayed vaccines-but don't get excited yet, they tend to only be willing to delay the "extra's" like Hep or chicken pox. One of the Drs. blogged that they did a little local poll of pediatricians in the Seattle area and over 77 percent had been approached and asked about delayed immunizations by worried parents.. They may act like they have the answers and stand by vaccines and the current schedule, but Drs. are wondering if there is compromise in vaccine schedules that would ensure coverage and reduce risk- they are hearing us! They acknowledge that we are now reading those warnings they hand us and asking questions- keep up the good work Moms- they are listening.

6)They really do hate smokers.

7) There seem to be a huge variable of personalities across the different medical specialities a lot of diversity, except in Peds- these Drs. seem to have certain personalities-really just a couple types instead of variables you see in other specialities. They often see parents as "obstacles" instead of partnerships. Though I totally understand that their "patient" is the child, they do need to remember that the child belongs to the parent- even when they are patients.

8) They judge each other. Perhaps more then they judge us peons...:-)

9) Based on the blogs- it is "them" against "patients." Many are not happy about us surfing the web and asking lots of questions. Some are accepting that it will change how they practice medicine, and it might be a good thing, but many are not happy at all that they no longer have control of all the knowledge. Even the Drs. who had been patients themselves, tended to analyze the experience from a Doctors point of view. I read a lot of blogs and many are what I would call "unintentionally arrogant" their Dr. point of view is really the only point of view that is right. I suspect this is a coping mechanism but it is still kind of obnoxious.

10) They are twice as worried about the future of healthcare. Though I did read some who were truly worried about patient care, I read a lot of worries about fiscal impacts on their hospitals,and careers. As I said, everybody poops! At the end of the day we are paid to do a job and look out for the company we work for, but we are motivated not by our Companies reputation, but by the money that shows up in our accounts at the end of the day.

11) I have always said I want a fat,older, out of shape, smoker, who eats twinkies and loves TV type of Dr. After reading all the blogs, I want that Dr. even more! A Dr. who has been harshly judged by their peers becomes more human- which makes my experience more comfortable and real.

To all you Drs. out there- we are not the enemy. As healthcare evolves and drastically changes in the next 20 years(it is coming better or worse), and you listen to the Politicians,other Drs.,Professors,Lawyers,Insurers- for goodness sake- Don't forget to listen to us!

Friday, February 3, 2012

Mito Moms

I just do not know how I would have made it through this week without the Mito Moms-

Of course, we would have made it through, but I would be completely lost and in panic mode. With their shared wisdom,advice and sharing of experiences I am able to process this new GI stuff much faster. I also am far more grounded then in the past when something new popped up.

Not that Drs. don't know what they are talking about, but sometimes they don't quite understand what a Mito Mom needs to hear.

To all you Mito Moms- Hugs and my deepest gratitude that you share so freely with me and Abby.

I think we have been spending too much time worrying. We have been missing out on opportunities to live. The bubblewrap theory works for a few months, but cabin fever has set in and time to take some risks.

While I have been tracking, analyzing,charting, protecting, we stopped taking care of having fun, learning, adventure. We all need a little bit of everything.

Thursday, February 2, 2012

GI and Abby

Well, we saw the long awaited GI Dr. Yesterday.

I have to be honest, I went in expecting a nice guy(I did my research!), and figured he would give us a script for a few meds, tell her to try a few tricks and have him send us on our way. This guy has a reputation for not wanting to intervene. He tends to want to give a kid some time to heal up, and make some changes to diet etc. He also is one of the few in Houston who has seen a number of Mito kids.

So, when he was way more concerned then we were I PANICKED! Abby Panicked! We were completely unprepared for a Dr. to react so strongly.

His suspicious is that there are a few problems at work. He wants her to see another GI too, so 2 to handle her? And I thought he would just pat us on the back and send us back out the door with some dairy free ensure and probiotics. I am still reeling a bit.

I think he was concerned about her lack of a "team" approach for care. I however, am not. Right now Abby actually has all her organs being looked after nicely- they may not talk to each other, but her Mito specialist overlooks everything, and her Mito specialist has a very unique gift of putting the smallest pieces together- I have faith she would let us know if we had a problem. Anyone of you that knows me at all, knows it is impossible for me not to be frank- and I was quite clear with him why we steer clear of Houston for care. I was pleased when he acknowledged that and understood. I was annoyed when he tried to get us to see "his" geneticist even after I was "frank"- no way no how am I going back through diagnostics ever again with Abby- she has had enough of that. It is what it is.. If they cannot find what they want in her blood they are out of luck- no more biopsies. No more EMG's.. Done. No need to torture her anymore. !5 years was way more then 10 people should go through in a lifetime.

What I felt from him is that we were perhaps a little bit in denial- he seemed to keep trying to get me to acknowledge that was a problem.

Here's the deal though, yes, I know there is a problem. I also know Abby and her process. Like many things in life I think where her health is at is somewhere in the middle- somewhere between "lets intervene now!" and lets try a couple more weeks of coconut milk and chicken broth.

At the end of the day, we liked him. I am hoping his frustation was more about the difficulty of getting good Mito care for her, then directed at our determination to avoid as many interventions as possible. I don't think Dr.s understand what it costs Abby to just make it to an appointment. That she will be in PJ's and napping all week to recover. The interventions rob her of a ton of energy, so any intervention must guarantee that it will provide her with many benefits - you cannot just go run her through things on a hunch..that causes her progression- and we cannot afford that.

So, looks like next up is a visit with his motility GI guy. Then scheduling a scope- not fun. But, he assures us it would be the quickest way to rule out a lot of different things and streamline what we need to do for her. I don't think he thinks some nutrition drinks are going to work to fix all of the issues, I felt like he was very anxious for me to understand that sooner then later she may need a tube- but, with this disease, progression is unknown. Abby could be fine for many more years, or she might hit the wall tomorrow. I suspect he hasn't dealt with a odd duck like Abby before. Boy, is he in for a ride! LOL

My Mito Moms were great- they talked me off the roof yesterday, and reassured me that finding a Dr. that actually understood the big picture of Abby's Mito issues was a very good thing- I feel much better, but am still a little panicked.

I don't trust many Drs.-and for good reason. I know this Dr. probably feels a little handicapped by the fact that I am not interested in her seeing his team- and I will try to compromise because I don't want to tie his hands behind his back.

What I am hoping will happen is he will have relaxed a bit by the next time we see him(and realize we see one of the very best Mito drs. in the country, he had no idea who Dr. Kendall was)and hopefully recognize that because of 15 years of dead ends with Drs. we have developed our own methods to keep Abby healthy- that we have sacrificed EVERYTHING for her health and we are far from not taking her health seriously- our family dynamic is based on Abby. Also, before I see him again, I need to breath a little and work on trying to trust a Dr. for once..

I am thrilled to say Abby managed the first bottle of liquid nutrition well! Despite her history of dairy allergies, and this one having some sort of broken down dairy protein she said it did not hurt anymore then anything else. Victory. I truly believe if we can get her nutrition back on track, her body will heal with time. Good food won't get rid of the depletion, I know that. but, we can get back to a level that she can go back to our way of management.

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