Monday, March 31, 2014

Vaccines and the California Measles Outbreak

If there are doctors who have taken the time to read the full package
insert on vaccines I have not met them yet. Typically they rely
on the handouts from the CDC.  Photo courtesy of vactruth.com

I don't believe heavily in vaccinations for lots of reasons. For full disclosure I did vaccinate my children until they were about 12 to 18 months old before I started to realized the potential hazards of vaccines.  I don't get my information from celebrities but medical journal articles. 

Rarely are unvaccinated children the cause of an outbreak. Normally the cause is someone traveling out of the US (or entering the US from a foreign country). These are called import cases. In the articles listed below, the fourth paragraph down, states that 99% of the 159 measles cases were import associated. From January 1, 2013 to August 24, 2013, there were no deaths were recorded due to measles.

http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6236a2.htm...

Even in the most recent outbreak in California less than half of the people that got the measles were unvaccinated children. In the last paragraph the article details ten people who had been out of the country and they are the ones that probably brought the measles back. In the United States measles is not prevalent due to proper sanitation, improved hygiene and good nutrition.  


Here is a post from Facebook from Dr. Bob Sears.  I like him because he provides a fair and honest evaluation concerning the California measles outbreak. 
_________________________________________________________________________

Orange County Measles Epidemic . . . Not (yet, anyway)!

Wow. Who would have thought that a few simple sentences in my last post would cause such an uproar? If you missed it, check it out below. All it says is “don’t panic. If your child hasn’t had a measles vaccine, you can get one now. If you don’t feel comfortable with it, don’t panic, because there are only seven cases (at the time).” That’s it.
But it’s interesting what people took from it:
Some people seem to believe the post advises people to not get the vaccine, which the post clearly doesn’t say. The post says get the vaccine, or don’t – it’s up to you. I guess what the vaccine militants wanted me to say, instead, is that every single person, without fail, should get the vaccine no matter what.

Some have attacked me for starting a measles outbreak seven years ago in my waiting room, which is false because no one with measles has ever even been inside my office (except for one child about 15 years ago who came down with a live measles infection from the vaccine, which is pretty rare but known to happen); so much for journalistic integrity for whoever wrote that (to be fair, most journalists do have integrity).

Some took my post to say that the MMR vaccine causes autism. WTF? The post doesn’t even include the “A” word.

Oh, and some thought my post said measles is harmless. My post didn’t even comment on the severity of the disease at all. Of course measles is sometimes harmless. It’s a tough disease. It’s no fun at all. The measles chapter in the book makes that very, very clear. My mistake though – I didn’t reiterate that in the post. So, for the record, measles CAN be very serious. It RARELY causes severe complications though. Almost everyone who catches measles here in the U.S. will be fine. You’ll be sick for a week, need to be quarantined, then you’ll be fine. IF your case is typical. BUT, in a small percentage of cases, even in the U.S. where we don’t have Vitamin A deficiency and protein malnutrition, complications can occur. About 1 in 1000 may die from it (studies vary – some say 1 in 3000, some say 3 in 1000). We haven’t had a measles death in the U.S. in over 10 years. But you know what? We will someday. May be this year. May be next. May even be here in the O.C. Every death from a vaccine-preventable disease is tragic. I’ve never said otherwise. So, just to make a few of you pro-vaccine militants happy, there you go. Measles can be bad. In developing countries with malnourished children, it’s even worse.

But for most, it’s a harmless disease. Old pediatric textbooks call measles a harmless and routine disease of childhood. IN DEVELOPED, WELL-NOURISHED COUNTRIES, for most people, that’s true. But not for all.

Finally, some love to blame me for the outbreak. As if people aren’t getting the MMR vaccine because of me. In the measles chapter of the book, AND in my alternative vaccine schedule, the MMR vaccine is very clearly listed at 1 year and 5 years. I very clearly recommend the vaccine in the book.

The post was simple – there’s a small outbreak, don’t panic. Get the vaccine or don’t. Up to you. Perhaps I should have said, “It’s really NOT up to you. It’s your social responsibility to get your children fully vaccinated so you don’t infect others. That way, NO ONE would ever need to have measles.” Keep reading – more on this later.

So, now we have about 21 cases in Orange County. We all knew it wouldn’t stop at seven. In my last post I gave a heads up that we’d see more. I thought maybe a few more, and didn’t think it would jump to 21. But it did. 5 cases are children, all unvaccinated. 5 are healthcare workers exposed to patients. They were vaccinated when younger, but the vaccine had worn off. As for the other 11 cases, I don’t know. Those details weren’t disclosed. But they are adults, according to the public health department notice. The outbreak won’t die out until everyone who’s been exposed either gets infected (which will be a very small few) or doesn’t, because they’ve been immunized or their immune system fights it off. Most outbreaks nationwide are restricted to a small number. The largest outbreaks from last year (58 in New York and 20 in Texas) occurred because the exposures were in large groups of unvaccinated people. Here in the O.C., almost everyone is vaccinated, so we are unlikely to see such a large outbreak. But it WILL extend a bit more. Who knows what the final number will be? But in the absence of a large unvaccinated group, it isn’t likely to spread much more than it has now. IF it hits a particular school or group where many are not vaccinated, it will likely spread through that group.

Finally, a message to those who chose to not get the MMR vaccine. I would still say don’t panic. The chance that your child will be caught up in this small outbreak is still very low. I understand your reasons for not wanting the vaccine. Every parent is required to read the CDC-mandated list of side effects to every vaccine before it is given. And the list of side effects to the MMR vaccine is quite daunting, and would scare any parent. You’ve probably read this list and opted out of the vaccines. The CDC handout tones it down a bit, but the MMR vaccine product insert doesn’t. And that’s what is spelled out in the measles chapter of the book. I simply list the side effects as described in the vaccine product insert. So, if any mandatory vaccine militants are going to be mad at me for that, then what you are really saying is that parents should NOT receive informed consent about this medical treatment. They should NOT be informed of the risks of a vaccine; they should just be reassured that the risks are small, they don’t need to worry their pretty little heads about the details, and just go ahead with the vaccine. If that’s how you feel, then you are justified in being angry with me. For the rest of you who like to follow proper medical procedure and medical ethics, you provide informed consent for vaccinations. Allow the parents to be involved in this decision. Some will decide NOT to vaccinate; this puts their child at a small risk of disease, and it poses a risk of their child spreading the disease to other unvaccinated or too-young-to-be-vaccinated or those-who-got-vaccinated-but-it-didn’t work (I don’t think that was grammatically correct), but parents have that right to make that decision.

If we could guarantee that every single dose of MMR vaccine would be harmless to every child who received it, then we could be justified in making the vaccine mandatory. Since that’s not the case, we must allow parents to decide.

Bottom line: if your child has had one vaccine, then there is a 95% likelihood that he or she is protected. If two doses, it’s about 98 to 99%. So, you’re in good shape. You likely have nothing to worry about. Unfortunately, as we’ve seen in this outbreak, some adults will lose their immunity, and may catch the disease. If you decided to not get the vaccine yet, then you have a decision to make. Read all the pros and cons. Understand the side effects of the vaccine as well as the disease. Consider the importance of public health protection. If you were planning to have your child get the vaccine at some point anyway, but you were waiting until an older age, maybe now’s a good time to consider it. But the outbreak is still small enough where you don’t have to rush into it. If you decide against the vaccine, the disease risk is still acceptably low. Stay tuned.
_________________________________________________________________________

Often vaccines do not confer a life long immunity to a disease so it gives people a false sense of safety against the disease. This is somewhat prevalent in measles and is definitely seen in whooping cough.

http://www.ncbi.nlm.nih.gov/pubmed/629246

http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6041a4.htm.... (Fourth paragraph down)

Have you read a package insert for the MMR? Here is the package insert from the MMR II made by Merck. On page six it says there have been no animal studies to determine if the vaccines can affect reproductive capacity. At the end of page six is the start if adverse reactions. These include vasculitius, diabetes, anaphalaxis, arthritis, Guillian-Barre syndrome, seizures, encephalophy, and death. There are many more side effects that I did not list (both severe and not so severe).

https://www.merck.com/.../pi.../m/mmr_ii/mmr_ii_pi.pdf

As the old saying goes....it's all fun and games until someone gets hurt.  That is the way I feel about vaccines.  IF you are the unlucky parent of a child injured by a vaccine (yes, it DOES happen) then YOU have to deal with the aftermath!  You cannot sue the doctor or manufacture of the vaccine for compensation to help with all the medical expense YOU will now have to deal with.  This is due to legislation passed by Congress called the
National Childhood Vaccine Injury Act (NCVIA) of 1986 (42 U.S.C. §§ 300aa-1 to 300aa-34).  Since 1989 the National Vaccine Injury Compensation (VICP) has awarded 2.7 Billion dollars in damages!  Often vaccine injuries are self reported by doctors so the number of vaccine injuries could be much higher than listed on VAERS.  It is not easy to win a case in the vaccine injury court.  Here are two links to give you an idea of what happens.

http://www.ccandh.com/faqs.asp

http://www.nvic.org/injury-compensation/losangelestimes.aspx

http://articles.latimes.com/2004/nov/29/business/fi-vaccinecourt29

I often hear the argument to get my children vaccinated for the greater good. Do you know what? The greater good would not be taking care of my child if they were injured from a vaccination...that would be my job. So, since its my job, then I feel like I should have the decision left to me if I want to risk my child's health by vaccination or just let them catch the disease. It is a bit of a gamble either way. 


Also have you ever thought about the connection between the CDC and pharmaceutical companies? There is a very close tie there. This is part of the reason why the CDC pushes for more vaccines than ever. The bill discussed in the article was not passed due to pressure from the large pharmaceutical lobbyists.

http://www.ncbi.nlm.nih.gov/pubmed/22375842


http://www.lawyersandsettlements.com/articles/drugs-medical/CDC_Big_Pharma-00285.html

http://www.ebcala.org/unanswered-questions/inadequate-vaccine-safety-research-and-conflicts-of-interest

http://articles.mercola.com/sites/articles/archive/2012/08/02/merck-flu-vaccine-conflicts.aspx

http://vactruth.com/2012/11/30/2011-billions-vaccine-manufacturers/
 
I've put a lot of thought and research into vaccinations. I don't think I should have my parental rights questioned when it comes to medical decisions concerning MY children. That is why I disagree with what Colorado and several other states have done but more on the erosion of parental rights in another blog post. 

Wednesday, March 19, 2014

#freeJustina Pelletier and How the Government Can Steal Your Child

Some of the latest news on the #freeJustina Pelletier case...

The parents went to court on Monday, March 17th, as the judge directed to hear the judges' decision on the placement of Justina.  Once again, Judge Joseph Johnson, added insult to injury by not making any decision.  He said he was going to make a decision by Friday.  Why Friday?  Your guess is as good as mine.  It makes no sense really.  How can the judge keep postponing the decision?  Hasn't the 13 months Justina has been in Massachusetts DCF's custody enough time to make a decision on the family or even the placement of Justina? 

Monday was also the day Justina's situation appeared on Dr. Phil.  I am thankful he gave more national coverage to the plight of Justina!  I included a clip from the show. If you look around a bit on You Tube you can find the full episode if you want to watch. In the full episode you can see the shock of the head of Child Protective Services in Los Angeles.  This case is appalling and there seems to be no end in sight of the wrong doing of Mass. DCF and Judge Johnson!

So why isn't Justina home yet or at least on her way there?  In a very telling radio interview constitutional attorney Mat Staver, of the Liberty Coalition, spills the details of court documents he had obtained.  Apparently Judge Johnson can order a child removed and custody be given to DCF; however, when he issues an order to return Justina DCF can ignore that order!  What you say?  Yes, the Judge wanted to return Justina to her family MONTHS ago but DCF has been ignoring his court order. 

If you are like me then you begin to wonder...  How in the heck can DCF ignore a judge's court order.  It is pretty simple really.  In an article from MassOutrage the group details just how corrupt DCF really has become in the twenty years! According to the article a couple of court case decisions back in 1995 gave DCF almost complete control of the children in its custody.  The only way a judge would interfere is if someone can prove they used an "abuse of discretion."  Normally one would think this is a good idea but judges have turned a blind eye to abuse of children given out BY DCF but if a parent had done the same action DCF would have swooped in and taken the children away.  You can't even sue DCF because they have been granted "qualified immunity."  Basically the ONLY way you could sue DCF is if they violate a "clearly established" constitutional right (which is why you NEVER open your door to a DCF worker!... Fourth Amendment). 

So what are clearly established constitutional rights?  They are rights specifically listed as being protected in your state or federal constitutions such as free speech.  Parental rights are considered "reserved powers."  This means that it is a power not specifically given to the government or by the constitution and belongs to the people under the Ninth Amendment of the Constitution.  ALL powers, including parental rights, which are not mentioned in the Constitution are kept by the people under the Ninth and Tenth Amendments (I did not know that!  Thanks MassOutrage!).  Since parental rights are reserved powers the government has the ability to take your child away whenever it sees fit. Why?  Because the government sees itself as the parent to people unable to take care of themselves (children, disabled and elderly). You birth them, love them, pay for them but the government OWNS them! Don't believe me?  Look it up!  Parens Patriae... In Wikipedia it defines parens patriae as a "public policy power of the state to intervene against an abusive or negligent parent, legal guardian or informal caretaker, and to act as the parent of any child or individual who is in need of protection. For example, some children, incapacitated individuals, and disabled individuals lack parents who are able and willing to render adequate care, thus requiring state intervention." So the government has reserved the right to have control over your children and you are only holding them for the government!  If you make the government mad (for any real or imagined reason) the government can seize control over your child.  You have NO POWER!  If the government takes your child your best hope if to pay for the very best attorney you can afford and fight them, politely but firmly, in court. (I did a lot of summarizing from the article on MassOutrage.  Please take the time to read the article in its entirety.  It really is a rather exceptional piece!)

This is EXACTLY what they have done to the Pelletiers.  They have been fighting alone, then they got help from the media, and the public.  Finally they have been getting help from billionaires, nationally recognized attorneys, national media, legislators, and many many others but DCF still has custody of Justina! DCF does not even have a plan to return her home to reunite her with her family!

Not to say the government doesn't need to step in sometimes for those that cannot defend themselves but the American people need to stand up and say, "NO MORE!."  We NEED a law, maybe even a constitutional law, protecting parents from false allegations by the government. To make the burden of proof, especially in cases were the child is being fought over concerning a difference in medical diagnosis, more difficult for the government to intervene.  We need to change the mind set of guilty until proven innocent back to innocent until proven guilty as our forefathers intended!

Sunday, March 16, 2014

#freejustina Pelletier and Measles

Photo courtesy of susanknowles.com
I have continued to follow the case of Justina Pelletier.  I have to say I am appalled by what has been going on!  Tomorrow's court date will help to determine what will happen with Justina.  I pray she will be allowed to go home but I am worried that Massachusetts DCF will continue to fight for custody over her.  Once it was decided that Justina's original doctor from Tufts could resume care then DCF should have released her back into the custody of her parents.  That was the reason DCF and Boston Children's Hospital used to take custody from the parents in the first place.  Being child protective services (which does very little to really protect children) they LOVE to keep their hooks families to control what the parents can/cannot do with their children.  I hope tomorrow goes will for the Pelletier family!  They will be on Dr. Phil tomorrow (check you local listing).  I will be watching and I hope you will be too!

Some items you can do to help #freejustina :

1.  There is a group taking a survey for parents of children with rare and undiagnosed diseases.  If you have a child that fits into that category please take the time to go and fill out the survey.
http://globalgenes.org/protecting-children-with-rare-undiagnosed-disease-from-discrimination-a-survey/

2. People are working on doing a "Twitter storm."   If you have a Twitter account please participate!  Information can be found here...  http://pastebin.com/LaCdeY0G

It is not one shot but at least two. If you go
college then you get another shot and now
some adults are recommended to get a fourth
vaccination.  Not so sure the vaccination
confers immunity as the CDC says if you
need so many boosters!
Photo courtesy of nlm.nih.gov
On to other news...

I hear a lot of flack occasionally about not vaccinating my children.  With Joseph having some disease that is undiagnosed I am in no hurry to vaccinate the children.  There was recently, a rather offensive opinion piece, published in the The Daily Beast titled Thanks, Anti-Vaxxers. You Just Brought Back Measles in NYC. The article was rather assertive. In 2000, when measles were declaired eradicated,  there were 89 cases.  So the extra 100 cases last year made for an outbreak?  Really?  There are roughly 318 MILLION people in the United States yet only 189 cases of the measles were reported last year. That was 0.0000006% of the population.  That is NOWHERE close to an outbreak to me!

From January 1 to August 24, 2013 the CDC reports some interesting information.  First, of the 159 cases reported to the CDC 157 of the cases were import-associated.  This means that someone went abroad and came to the US with the measles and infected others.  The US itself does not have a high incident of measles but other countries, with poorer nutrition and sanitation, have higher incidents of measles. Second, out of the 159 cases reported there were only 17 people hospitalized for some reason related to the measles.  Only FOUR people out of 17 had something more serious (pneumonia) and NO DEATHS were reported.  This is in stark contrast to the quotes I have been seeing saying about 30% of measles cases have serious complications.  IF ALL of the 17 cases that were hospitalized were done so for serious complications (and I doubt it or the CDC would have reported it) then only 10.7% of the measles cases caused a significant health problem. Not the 30% figure that is so often thrown around.  If, as I think, there were only FOUR serious complications for the measles (I would consider pneumonia serious) then only 2.5% of the measles cases caused a serious complication. Again, no where close to the 30% figure.  I think the CDC and others use that figure as a tactic to get people to vaccinate.  If you are wanting to read a bit more on measles and why there is no dire need to vaccinate then please read the blog post by titled Thanks, Pharma. You created the “anti-vaccine movement”.

I have done my research on vaccines and I have to say I would rather leave my children unvaccinated.  With the health issues they have and the low risk they will be exposed to measles I am not worried.  Even if they got the measles I think they would handle the disease just fine.  Then they would have a permanent immunity to measles versus the false hope they would never get it because they were vaccinated.

             

Thursday, February 27, 2014

Rare Disease Awareness Day #freejustina


     
Tomorrow is Rare Disease Awareness Day.  What a great time to revisit the Pelletier case!  I have to admit I am rather at a loss!  The parents have done all they could.  Monday they show up in court thinking they would have their daughter returned to them, a little over a year after she was taken away, but the judge instead ruled Justina would be placed in foster care versus going home to her family (Father, mother and three sisters). Once the news broke about what was going to happen to Justina people immediately began to speak out and call for a vigil at the foster care facility in Merrimac.  When the foster care group home heard the negative press, the protests and all the drama associated with housing Justina they quickly declined.  What do I say about that?  Way to go!  Glad the voice of the people can still intimidate someone!

Photo curtsey of opposingviews.com
Massachusetts Representatives Marc Lombardo and Jim Lyons seem to be among the few people in the state that have some common sense! 

“The Pelletier case is a dispute between conflicting medical opinions… the decision on which medical treatment to adopt should rest with the parents, not with DCF. The Department’s heavy-handed, unjustified interference with the rights of these parents is an example of what is wrong with this agency,” said Rep. Jim Lyons (R-Andover).

WOW!!! Congratulations sir! You are brilliant! These two legislators along with 12 others are looking to introduce a bill into the House to ask for the release of Justina to her parents.

So what can YOU do to help? Most of it is pretty simple yet VERY effective!

1. You can participate in the Thunderclap event set up for March 16th at 9am. What is thunderclap you ask?
I had never heard of it either but Thunderclap is a platform that allows you create a message, then other users can sign up for it with their facebook, twitter, and instagram accounts. On a specific day and time, thunderclap will then use everyone's accounts (don't worry it doesn't save your passwords and stuff) to post that same message. It ONLY posts it ONE time, but when 40,000 people sign up with twitter, facebook, and instagram, then that same message is sent out 120,000 times. Social media EXPLODES. I love the concept and I signed up! Here is the link:  thndr.it/1hgW3zS

2. You can go to each Massachusetts Representatives Facebook page and comment either thanking them for supporting the resolution to free Justina or politely asking that they do and hashtag ‪#‎freejustina‬. There are hardly any comments on these FB pages right now. 

These following people deserve a round of applause for having some common sense! They are currently support the resolution to #freejustina.

Mr. Marc Lombardo of Billerica

Mr. Jim Lyons of Andover

Mr. Matt Beaton of Shrewsbury

Ms. Leah Cole of Peabody

Mr. Geoff Deihl of Whitman

Mr. Angelo D'Emilia of Bridgewater

Mr. Ryan Fattman of Webster

Mr. Paul Frost of Auburn

Ms. Colleen Garry of Dracut

Mr. Jim Miceli of Wilmington

Mr. Frank Morgan of Lawrence

Ms. Shaunna O'Connell of Taunton

You can contact the other members of the House either on Facebook or at the following website to ask them to join in supporting the resolution:
https://malegislature.gov/people/house


3. You can contact the following officials and let them know you are concerned about the Justina Pelletier case:

Martha Coakley
Attorney General of Massachusetts(candidate for Governor)
One Ashburton Place
Boston, MA 02108-1518
ago@state.ma.us
617-727-2200
617-727-4765 (TTY)

Joseph F. Johnson
Judge
Essex County Juvenile Court
Lynn Session
139 Central Avenue
Lynn, MA 01901
(781) 586-0415
http://www.mass.gov/courts/courtsandjudges/judgesandjudicialofficers/johnstonj.html

Dannel P. Malloy
Governor of Connecticut
State Capitol
210 Capital Avenue
Hartford, CT 06106
860-566-4840
800-406-1527 (toll-free)
860-524-7397 (TDD)
860-524-7395 (fax)

Deval Patrick
Governor of Massachusetts
Massachusetts State House
Office of the Governor, Room 105
Boston, MA 02133
http://www.mass.gov/governor/constituentservices/contact/

https://twitter.com/massgovernor
617-725-4005
888-870-7770 (toll free in state)
617-727-3666 (TTY)
617.727.9725 (fax)

Olga Roach
Acting Commissioner
Mass. Department of Children and Families
600 Washington Street
Boston MA 02111
dcfcommissioner@state.ma.us
http://www.linkedin.com/pub/roche-olga-dcf/32/5b3/a91


Even after we have Justina home lets all remember that this is more than just a fight for Justina.  This is a fight for parental rights, for the rights of mental health patients, protection to children and families with rare and undiagnosed diseases. It is SO easy for a medical professional to accuse parents of medical child abuse when they have a child that has a rare or undiagnosed disease.  Tomorrow is Rare Disease Day!  What a great time to do your part in helping Justina, who suffers from the rare disease of mitochondrial dysfunction, along with helping to protect the rights of so many other people!



Speak up, Speak out!  Go and do your part!  Please dedicate 15 minutes out of your day helping such a great cause!

Sunday, February 23, 2014

Undiagnosed: Medical Refugees - The Movie

Photo courtesy of patientsafetyradio.com
Addendum:  Dr. Katina Moritz will be doing some speaking engagements concerning this documentary.  She will be coming to the Phoenix area.  If I receive any information I will pass it along!
 ________________________
Across my Facebook page came something I found most interesting.  I LOVE my Facebook friends!  I have a very eclectic and interesting group of friends on Facebook and I never know what is going to see on my Facebook page.

Yesterday I say a post about a new movie called Undiagnosed: Medical Refugees.  This movie moved me like no other!  Having a child that has stumped multiple medical specialists as to what is wrong with him I can relate!  Going from medical specialist to medical specialist can get you in trouble with child protective services (like in the Justina Pelletier case) but if you believe something is wrong you have to keep searching for answers!  The ladies who are working on the film have done so, to this point, completely out of pocket.  They are about 80% complete with the movie and are seeking funds to help with the final production of their movie.  Please donate!  It would be a tragedy if this film is never produced!

Please pass this along..Twitter, Facebook, Blog and other forms of social media.... Let's get this movie funded!

A bit about the film from Vimeo...


UNDIAGNOSED - MEDICAL REFUGEES Trailer and Plea from Undiagnosed Films on Vimeo.

There is a hidden epidemic - millions of people living with perplexing illnesses that elude definition and treatment. Undiagnosed: Medical Refugees is a medical documentary about what it is like to exist in a constant state of unknown, struggling with undiagnosed illnesses and rare diseases, and existing as medical refugees in a modern health care system. The film aspires to bring objectivity to this controversial and timely subject by interviewing doctors, medical administrators, and people, both children and adults, who have the misfortune of suffering without a diagnosis. Research and professional opinions combine with gripping stories into an incredible narrative that showcases the strength of the human spirit and the need for change in our medical system.

Saturday, February 22, 2014

Caroline's Carts Are Coming to Krogers! Ask Now!

Photo courtsy of al.com
I cannot say how thrilled I am for Caroline's Cart! Being a Bama girl myself I am proud of the founder of Caroline's Cart, Mrs. Drew Ann Long!  Good for you for having an idea, pushing and marketing it and now she is finally getting orders pouring in!

I have been a big fan of Caroline's cart for almost two years now.  On October 21, 2012 I sent a letter to Krogers asking they carry Caroline's Cart.  Having disabled children including one child that has a great difficulty walking I wanted to see these carts in my local store.  So I wrote a letter to Krogers...

(Sorry for any formatting issues...hard to copy over from my email account!)

From: Michelle Harris [mailto:murigheal72@yahoo.com]
Sent: Sunday, October 21, 2012 11:56 PM
To: Goosman, Gregory M
Subject: Caroline's Cart

I have been a customer of the Kroger's corporation for the last 20 years. Everywhere I have lived and traveled I have shopped at Krogers (Kroger's, Smith's and Fry's). We currently live in Gilbert, AZ.

Though the Fry's on 714 South Val Vista Drive , Gilbert, AZ 85296 is one of the most convenient to stop at there are several choices such as:
855 West Warner Road, Gilbert, AZ

3751 East Baseline Road, Gilbert, AZ

Each of these store I am a potential customer depending on what I am doing and where I am going at the time. I am sure I am not the only woman with a disabled child whom I take shopping. I have surviving quadruplets. One of my children is several delayed including mental delayed. It is nice to have a cart where he can fit and I am not having to try and contort him to fit into the child seat or let him roam in the basket part of the cart. Please consider purchasing Caroline's Carts for your stores in my area!

You can read more about my surviving quadruplets at:
http://mommax6.blogspot.com/
I am the first listing when searching surviving quadruplets on Google.
Here is one of your customers, my son, Joseph.
(I inserted a picture here)
Sincerely,
Michelle H.

After all this time I never thought I would hear a reply.  Imagine my surprise when I got an email from Mr. Goosman the day before Valentines!  I shared this news on Valentine's Day with Caroline's Cart site on Facebook...

From: "Goosman, Gregory M"
To: Michelle Harris
Sent: Thursday, February 13, 2014 2:14 PM
Subject: RE: Caroline's Cart


Michelle,
We now have this set-up in the Kroger order system, please ask that your store manager order this line item from the Technibilt Company for your store. They can order through the Kroger Facilities Group in their Division. Here is the information to use when asking. This is now approved by Kroger and will be able to help you out.

Supplier: TECHNIBILT LTD
Supplier Part #: CC20.7Z.3BLU.CAROLINES
Kroger Item #: K-0044999
SPECIAL NEEDS CART MODEL CC20.7Z.BLU. CAROLINES CART


Any further questions, the store manager can call me…………..sorry for the delay.
Greg Goosman
513-762-4497


Thanks Kroger and your multitude of chains!  This was the best Valentine's Day gift EVER!!!

http://youtu.be/7HTt9fx5WPE

The Medically Complex Child: How the State Can Kidnap Your Child

Justina BEFORE going to BCH.
Photo courtesy of nydailynews.com
Addendum: Here's a link to all the financial supporters of BCH! Hit them where it hurts! Where the money is!! Contact all these sponsors and let them know about Justina! If they don't pull support.. we will
Link to Sponsors of BCH Also a Facebook page has been set up to rally and organize the people to help Justina and her family. Please visit the Free Justina Pelletier From Boston Children's Hospital! for more information.
Justina NOW at BCH. Who do you think was taking better care of her?
Photo courtesy of nydailynews.com

Addemdum:  Here is one of the best overall articles I have read concerning the Justina Pelletier case. Click here.

I wanted to comment a little on the recent news story.  The custody case of Justina Pelletier.  If you have not heard about this case you should get involved!  There are so many stories on the internet at this point I would suggest googling Justina Pelletier to read up on the case.  This case is an outrageous abuse of authority of a hospital and the State! As the parent of a child that has been called "medically complex" (by several doctors) I understand the risk of taking my child to a hospital or a new doctor.  Why should I be afraid?  The Justina Pelletier case is just one example (there are several more) where the parents were trying to do the right thing but it ended horribly.  The parents had a diagnosis of mitochondrial disease from a doctor at Tufts and for the last two years had been treating their daughter according to her specialists.  When she got ill last year with the flu around Valentine's Day they took her to a local hospital.  The local hospital in Connecticut did not feel as though they could treat her adequately so they sent her on to Boston Children's Hospital (BCH) which is well known for its pediatric research and specialists.  Justina's doctor at Tufts, Dr. Mark Korson, (Head of Metabolic Services at Tufts) was on his way there to see her at BCH.  When Justina went through the emergency room a neurologist took charge of Justina's care before her doctor from Tufts could arrive.  The neurologist and then a psychologist determined Justina suffered from a psychological condition (Somatoform Disorder) and not from mitochondrial disease.  Once Justina's doctor from Tufts arrived he was told he could not take charge of Justina's care.  The parents of Justina then wanted to take her out of  BCH to another hospital for a second opinion.  They were told they could not and escorted out of the hospital.  It was only a day or two after the parents (Lou and Linda) were notified that the State of Massachusetts had taken custody of their daughter.  They were told they lost custody because they had over medicalized their daughter and this is a form of child abuse.  So, because their daughter did not feel well, they took the time to take her to various doctors in a hope to find out what was wrong. They researched possible causes of her illness and had her undergo various medical tests to try and determine the problem (which a diagnosis WAS made) and they were accused of the more encompassing form of Munchausen By Proxy (this is no longer the term used, the modern term is Fictitious Disorder By Proxy) called medical child abuse. 

What is the profile of a person accused of medical child abuse (from American Academy of Pediatrics)? 
1.  Life revolves around the child's illness. *If you have a child who is ill and you cannot determine the source of the illness I am sure your life, as a parent, would revolve around your child's illness too.  I know ours (John, myself, James and Margaret) revolve around Joseph.  We work really hard to be careful not to bring illness into the home for fear of Joseph getting critically ill.

2.  "Good parent" or Martyr. *So being a good parent, a concerned parent, can be used against you if a physician decides you are perpetrating medical child abuse.

3.  Not being relieved at a normal test result. *I have to admit I have been guilty of this. Why? Because I knew something was wrong but the tests were not showing the problem.  I have gotten into several arguments with neurologists telling me there is nothing wrong with Joseph besides him being premature. We did an MRI and the results were normal.  I was upset.  My gut, my mother's intuition, said there IS something wrong! So, in this case, I was NOT happy about a normal result.  I am glad Joseph's brain is normal. I really was, even at that time, but I knew something else was going on!  In the last year, with the additional tests we have run on Joseph, I have been vindicated.  We still do not know what is wrong with Joseph just yet but we have narrowed it down to something genetic, something metabolic or mitochondrial disease (the same disease that Justina was diagnosed with!).

4.  Promotes invasive tests and procedures. *Again, I am guilty of this!  I did not push for invasive tests without doing less invasive testing first.  I did not want to put my child through that.  I waited, and waited, and waited some more.  In the last year we did some of the more invasive tests.  I hated putting Joseph through it but on the other hand we now have more information and clues on what might be wrong with Joseph.  Even if this means we are finally able to get a diagnosis of "Joseph's disease"!

5.  Interest and expertise in medicine.  *Again, I am guilty of this.  I have learned a lot about medicine over the years.  I have spent a lot of time researching what might be wrong with Joseph.  I have bought, borrowed or read what I could of medical journal articles and medical textbooks.  Why?  First off I am a concerned parent wanting to find what is wrong with my child.  I realize that doctors, in particular medical specialists, are busy with a multitude of patients.  Even Joseph's primary care physician, the doctor who would know him best, still cannot know Joseph as well as my husband and I do.  Joseph spends the majority of time with us, not the doctor, so we know him and his behaviors best!  Second, I am a research scientist.  I may not be a medical person but I understand science and I can research with the best of people.  In reading medical textbooks on neurology I spent a lot of time underlining medical terminology and researching the definitions.  Just because I did not go to medical school does not mean I cannot understand a medical journal article or medical textbooks.  It takes me longer to read and understand than a medical professional but then again I am not conversant in the jargon.  I am sure a medical professional would have a difficult time understanding a geologic journal article (one of my majors) for the same reason...lack of understanding the jargon.

I could easily be accused of medical child abuse by a hospital that knows nothing about me, my history with doctors, or Joseph's complex medical history.  At a hospital they do not know you there and make a snap judgement about you and your child.  This is what happened to the Pelletiers.  The parents had spent a lot of time and testing to determine Justina's condition.  A medical specialist, highly recognized in his field, had diagnosed her. Dr. Korson was successfully treating her.  She was a fairly normal child, enjoying physical activities like ice skating and all of that was stripped away from Justina once BCH decided to interfere with her treatment.

Justina is not the only case and there can be SO many other reasons for the abnormal test results.  She is not the only case by BCH and not the only case in which a parent has been falsely accused of medical child abuse.  Once the State takes custody the horror and nightmare for the parents begins as it can emotionally and financially bankrupt a family!  Parents are typically given a gag order or are afraid to speak out. Parents fear child protective service will see speaking out as an attention seeking behavior and will use that as "additional proof" the parent(s) have Munchausen. Other cases where children were taken into State custody for questionable reasons include the Kirks case, O'Shell case, Velasquez Case, Huber Case, and there are many more but the parents are afraid to speak out!

I applaud Lou Pelletier and his decision to speak out even though there was a gag order on his case.  It has allowed other parents to come forward and talk about their case.  It has inspired me to speak out!  Lou has begged for help and people are starting to listen.  Please help!  Please call BCH, the mayor of Boston, tell anyone, tell everyone!  Go and sign the petition to the White House.  This petition states that the parents should have the final say in medical care.  Read below what Justina's parents were given by BCH as her new guidelines for care.  Would YOU accept that?  Would YOU allow NO second opinions?  Who else knows your child better than you???

Guideline of Care for Justina - Given to Her Parents by BCH
Photo courtesy of dailymail.co.uk




Talk by Dr. Korman