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!

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.

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

What a Week!

Happy Friday!  I know I am glad it is Friday but I will explain that later!  The children are doing well.  There has been a lot of reports of stomach flu going around in the area.  So far we have been able to avoid anyone getting sick!  This is SO important because Margaret and Joseph has gained a decent amount of weight in the last few months but if they get sick with the stomach flu they would lose all the weight they have managed to gain.  Not good!  So we are trying hard to keep everyone well.

I know this may sound strange but what do people think about having a birthday party for your child when it is not their birthday?  This is something my husband and I are contemplating.  Our children's birthday is about two weeks before Christmas.  This is a horrible time of year to try and have a birthday party for a child.  We have the additional complication of Joseph and his health issues that I don't want the children out and about during the winter.  So what is a parent to do?  I want to give the children the experience of having a birthday party but not jeopardize their health in the process!   The idea John and I are toying around with is to throw the children a birthday party on HIS birthday (June 25th).  It is during the summer, still not a great time exactly to have a children's birthday party, but we would not have to worry about the children getting ill during the summer (WAY less chance of that happening in the summer time).  I think the children would have SUCH a fun time! I am looking forward to this idea!

I was glad to have Monday off this week.  It allowed me to spend time with John and we really had a nice time!  Tuesday I headed out of Phoenix to Flagstaff for work. It was a nice drive though I had to start my work day at 5am!  I went to a Partnering Meeting for a project.  While at the meeting my object was to meet with other employees and get their input on another one of my projects.  The other project is major project for the office so it was important I finish it that day.  I thought I was able to work out a solution and I headed home happy thinking my other project was wrapping up also.  I went to get paperwork signed and found out I was wrong!  The details I thought I had worked out the day before was not finalized.  This was BAD since I had my project signed off on by higher ups!  I worked at one of the consultants office's I work with on Wednesday because I did not want to be at my own office.  I was sure the BIG boss would show up and yell at me for not having my project finished.  I did not want the drama so I stayed away!  I was able to get everything coordinated and wrapped up on Wednesday and got my project out late that night.  Thank goodness!  I was starting to become concerned for my job...as in, I was worried I would be fired!  Glad it all worked out!  I went into the office Thursday and worked on several other things.  Friday I was going in to work half a day but I never made it.  I was desperately needing sleep!  The stress and anxiety of the week got to me!  Glad the main component of my big project is finished and out the door!

I've Been Slacking!

I freely admit it that I have been slacking lately with keeping up with the blog.  In my defense I have not been feeling very well.  For the last four months I have not felt well and things have been getting worse.  I have been complaining for the last year that my hair has been falling out and it is so bad not I can see my scalp through my bangs.  I have been battling chronic anemia since the birth of the babies but I have no idea why.  I take iron pills until I am good and a few months after I stopped I would be anemic again.  So I went to my primary doctor and discussed with her my issues.  She was not helpful because she told me to see a series of specialists. The dermatologist said it would not be something she could help me with.  I have gone to a GI doctor.  After being invaded in all sorts of ways that would make an alien abduction story sound tame the GI doctor determined I do not have issues with gluten, lactose, or have an ulcer.  I thought I had an ulcer with all the symptoms I have including the chronic anemia.  I was wrong.  So what's my problem...why do I have the chronic anemia?  So far, who knows?  I also do not know what to think about my hair.  So I have have several other appointments lined up.  One with a hematologist and an endocrinologist.  Hope to find an answer with someone.

Thanksgiving Day 2013

As for the children.  Well, they are far more interesting to talk about and I would guess that is why most people read the blog!  Near Thanksgiving I had all the children lose at least one tooth. It was VERY cute.  I love the picture I took of all of them smiling.  Joseph has both of him front teeth missing.  He had those pulled out when he was at the dentist in Las Vegas.  Then Margaret has lost her left, top front tooth.  James lost his top, left tooth that day!  Very cute!  Lots of smiles and not as much teeth!  Thanksgiving was a nice time.  We had moved into our new house near central Phoenix. I had Maddi, Dimitri and Jerrin all here at that time.  It really was a nice Thanksgiving!

I will have to cover the children's 6th birthday some other time. 

Christmas was a stressful time.  We were running VERY low on money.  I was back logged in bills and struggling to support everyone one in the house.  My oldest son was helping out too.  He had taken a part-time job at FedEx and was helping out with food and bills in the house.  Jerrin soon left after Christmas. He went back home to the 16 year old he was seeing (he is 21).  I cannot help but say what is in my heart...they do not belong together.  Because of that I did not keep my mouth closed and told Jerrin what I thought.  In doing so cost my relationship with him.  If that is how things need to be right now then that is the case.  It breaks my heart but I understand he is following his heart.  I just cannot support in that endeavor at the moment.

New Years was quiet.  John and I enjoyed our 14th wedding anniversary.  It was nice to have a little time alone.  By the end of January Maddi and Dimitri had moved out.  I hated to see them go.  I really did.  John and Dimitri were seeming to argue or have some sort of issue most every day.  I honest think John was the cause of a lot of the issues.  I don't think he meant to be but subconsciously I think he wanted to have the house to himself.  After Maddi and Dimitri left John and I were coasting along but things were tense.

We were finally able to find someone to do rehab.services for the Margaret and Joseph.  We also found someone to give us some respite.  So in the 18 months I have been here I have only been successful in getting rehab. services and some respite set up along with a little intermittent physical therapy services.  My children need so many other therapy services and I just cannot find service providers here.  Just getting into some doctors too can be a chore.  I have been trusting John to handle those duties and I have been trying not to interfere but it is getting harder.  I know I need to get the children in to see doctors and specialists and the time is running out for me to have "good" insurance and the appointments are SO far out into the future!

My time is running out because I think the plan is for us to return to Las Vegas.  John and I both like it there more.  I can get the therapy services I need for the children easier.  The therapy services, especially at this age, is significantly more important than them seeing doctors.  I know Joseph is a medical mystery.  We are still at a lost.  In Joseph's recent deep muscle biopsy test and lumbar puncture we still did not find answers. Joseph's test from the lumbar puncture did not show cerebral folate deficiency.  That was good news.  In the muscle biopsy test on the other hand did not show me what I wanted.  The purpose of the muscle biopsy was to test for some of the more "common" forms of mitochondrial disease.  Oh course, Joseph tested negative for all of those.  That does not mean there was nothing found that was unusual in his biopsy!  Joseph showed an increase in positivity for acid phosphatase and he showed abnormal storage of lipids (fats) in his muscle tissue.  Not enough for the pathologist to be able to diagnose a specific disease but enough for it to abnormal.  In the end the pathologist said he could not exclude mitochondrial disease (because there are other forms that cannot be tested but are determined by ruling out other diseases) but said Joseph should be examined for an "unspecific" (the pathologist's word and it means he could not point to any one disease because Joseph's symptoms were not severe enough) metabolic disease and genetic testing.  Ironically, I have done the genetic testing.  Nothing was found there.  That does not mean I would not revisit the genetic testing again.  Tests do change and improve.  Metabolic disease on the other hand is not something we have thoroughly investigated.  Joseph has had abnormal blood work that points to possible metabolic disease but it has never been to the level that a doctor could point to some number and say....hum, looks like we have a problem with so-and-so disease.

I cannot state how frustrating it is to know something is wrong with your child.  You fight years and years to get specialist to see your child as something more than just a preemie that is having problems.  Once I finally got to Phoenix...that happened.  I have specialists here that agree with me. Something is wrong with Joseph.  As to what that is, it even has the specialists here stumped.  All I want is to know what is wrong and if there is anything I can do to help Joseph reach his maximum potential.

Sigh, okay, enough venting about Joseph and his team of doctors.

John and I had a really nice Valentine's Day.  We got to go out on a real date and have a nice time.  I was worried that things would not go well for us since I knew there were relationship issues we had to discuss but we had such a nice time.   We did not do the things we wanted to on Valentine's Day because the relationship stuff turned out to be a HUGE topic and pretty productive discussion overall.  Currently John and I feel closer to each other than we have in years.  I am happy right now and so is he. I wasn't sure if we could have happiness like that again but it seems like we can.  I think it has been helpful to have all the twenty-somethings I had in my house gone. This has allowed John and I to be more ourselves.  To have our time alone in the evening and the space to fight (and/or make up...LOL) as we wish is rather priceless.

Okay, now that I am caught up I will work on keeping the blog more up to date.  Having a desktop really motivates me to write!