Temple Terrace Girl Scouts triathlon helps girl | Breaking Tampa Bay, Florida and national news and weather from Tampa Bay Online and The Tampa Tribune | TBO.com

Temple Terrace Girl Scouts triathlon helps girl | Breaking Tampa Bay, Florida and national news and weather from Tampa Bay Online and The Tampa Tribune | TBO.com

I just had a really upsetting encounter with one of Megan's physicians - I actually feel like just breaking out into a full on emotional cry right now. Why should I feel like I am bothering the paid physician to answer a question or clarify a certain test that needs to be performed. It is one that was suggested by the physician and the instructions were to get one of my local Dr's that I trust to have it set up - it is a genetics test/skin culture and labs - is it too much to ask for the actual test code that Mayo uses so we make sure it is done right? I attached the tests via PDF to my email

My question:
The two attached docs are tests through Mayo. Could you please look at them and confirm that this is what we should proceed with? He will be able to perform but we want to make sure we have the right studies before proceeding further.

In the event that these are incorrect please advise the correct test orders.

Response:
They're exactly what is it my email

This is what was in the email which led me to question test codes:

The additional studies are 1) obtaining tissue (it can be peripheral blood lymphocytes) and completing electron microscopy studies on them to look for the presence of the typical lysosomal inclusions that are diagnostic of the disease. A pathologist would know what to look for in this case. 2) Skin biopsy to do TPPI enzyme analysis
through Mayo labs. The skin would have to be grown in culture then sent to Mayo labs for analysis

I did not respond to the very curt answer I got but decided to call to be told by the person on the other end that the Dr. is actually out sick and they were surprised that I got an answer at all. And her being so blatantly curt was passed off as she is sick and she did not have to answer at all.

If you are sick and unable to answer - have an autoresponder on your email that states that so you dont feel obligated.
I did not ask for an answer "TODAY". Did not expect one till next week sometime.
I am not a doctor and have never professed to be one. I am my child's lifeline and advocate though. I never bitch or complain about any fees, appts, wait times, etc. I understand that it is a highly specialized area and there is not a vast amount of help to mito patients and you have to be patient and understanding.
Lastly - I dont care how you feel - this is your profession - this is about my child's life and future - she has a bad day every freaking day - there are more bad days around here than good for everyone. I am tired and emotionally spent - but I am not rude.

Please tell me I am not crazy - why do I feel hurt? I guess it is so disappointing. My faith in the medical field and their compassion for the people they treat in their specialty is rarely there or it seems it is a front when they act like they do care.

For the first time in so long Megan woke up clear in her chest - hope it stays this way. She also has been pretty cranky and I figured out why - she is cutting her six year old molars. Had her in the pool and she had her head back and mouth open and they were staring right at me - puffy gums and all.I am guessing it hurst more cause she does not chew food with her teeth and her gums are thicker - ouch! And - She has broken the 25 pound threshold at 25.2 pounds. Pacemaker was put in a year ago on April 13th and she has gained 4 pounds with it.

   5th Annual Tri It Get Fit Youth Triathlon & Fun Run

Saturday--May 4, 2013

                                   Sponsored by Girl Scout Troop 758

Reverse Triathlon:  Run, Bike, Swim

Temple Terrace Tri It Get Fit Triathlon  (TTT)

ONLINE REGISTRATION LINK--click here

 “Tri It Get Fit” is the PERFECT location to kick off your 2013 triathlon season or “tri” your first triathlon!  A triathlon may seem overwhelming but if you can swim, bike and run a short distance YOU CAN DO IT!  The triathlon is open to youth of all ages (starting at 5 years old) and adults and includes a closed course run, followed by a scenic bike around Temple Terrace Country Club Golf Course and finishing with a heated pool swim at the Temple Terrace Recreation Center. 

We are also adding a NEW EVENT for the community this year--a 1 mile FUN Run/Walk Event for those individuals who would like to participate in a fun, healthy event and support our efforts without committing to a triathlon!! 

Join us to celebrate youth fitness and “Tri It Get Fit”.  Troop 758 will be holding severaltraining sessions in March and April for youth and adults to train and become familiar with how to transition during a triathlon.  Training dates will be sent via email and will be available on our website.

Girl Scout Troop 758 would like to invite you to participate in Girl Scout Troop 758’s 5th Annual “Tri It Get Fit” Triathlon at the Temple Terrace Recreation Center, Saturday, May 4th, 2013.  Last year we had over 130 participants and hope to well exceed this number this year.  Girl Scout Troop #758 is hosting this event to promote youth fitness and to raise awareness of the fastest growing participatory sport in the world, the triathlon.  This year will continue our component of the race for physically challenged and special olympic athletes. 

                    Challenge your employees to race as a team!!

Event Sponsorship Opportunities

The troop will be obtaining Event Sponsors to cover the costs of the triathlon (renting the Temple Terrace Recreation Center, hiring police officers, etc.).  The proceeds from the triathlon will be deposited into Girl Scout Troop #758’s treasury, a portion of which will benefit several local community projects including the “Miracle for Megan Garrett Irrevocable Trust”.    To learn more about Megan’s touching story go to www.miracleformegan.com.
Troop 758 has donated $13,000 of their proceeds from the past four triathlons to Megan Garrett's Trust and $2800 to "Clouds of Hope" for the All Accessible playground in Temple Terrace.  For more information about "Clouds of Hope", please visit www.cloudsofhope.com.
                                            Sponsorship Form (click here)

Genetics

After years of genetic testing we got results yesterday that confirms a gene mutation. Mitochondrial Disease genes are hard to detect - sometimes you never know what nuclear DNA genes are affected - only have mitochondrial DNA results. This gene is the primary cause of Megan's Mitochondrial Dysfunction.

We will be doing some other tests now that we have this info....this was definitely long awaited. Cant say it is good news, but it was necessary news.

Santavuori-Haltia/Infantile CLN1/PPT disease
Definition:
Santavuori-Haltia/Infantile CLN1/PPT Disease is part of a group of progressive degenerative neurometabolic disorders known as the neuronal ceroid lipofuscinoses (NCLs). The NCLs are characterized by an abnormal accumulation of lipopigaments, which are subtances combined of fats and proteins within the brain’s nerve cells, eyes, skin, muscle, and within other tissues throughout the body.

NCL I is known to result from deficient activity of an enzyme called palmitoyl—protein thioesterase-1 (PPT-10). The gene coding for this enzyme has been named CLN1.

Symptoms of Santavuori-Haltia/Infantile CLN1/PPT Disease begin between six months and 19 months of age. During ages of six to 19 months, a delay in mental and muscular activities appears at the same time when the affected child begins to lose the mental and physical skills he/she had acquired. A small head, seizures, an inability to coordinate voluntary muscular movements, decreasing muscle tone, muscle spasms, and visual impairments are additional symptoms. As neurological complication progress, immobility, spastic and involuntary movements, and a lack of response may also occur.

Santavuori-Haltia/Infantile CLN1/PPT disorder is an autosomal recessive disorder.

Life Expectancy for Santavuori-Haltia/Infantile CLN1/PPT disorder is five years of age or younger.

An MRI scan of the brain typically shows severe atrophy of the cerebral hemispheres and cerebellum.

There is no cure for Santavuori-Haltia/Infantile CLN1/PPT disorder. Treatment is limited to reducing or controlling the symptoms of this disorder by routine consultation with the patient’s neurologists, ophthalmologists and genetic counselors.

Hope they publish correction

Dear Steve:  

So happy to see the article this morning in the paper and the front page!  I hope that it gets some well deserved attention.  Thank you for taking the time to speak with me and investing your efforts and time into this story.

There is one item that I wanted to comment on directly to you as it is not correct and wanted to clarify:

Megan Garrett, 6, wastes away from a degenerative cell disease, has daily seizures and never leaves her bed.  

Reading the article and was upset at  about the statement about about  Megan never leaving her bed.  That is not true at all.    She is" bed

bound "meaning unable to leave her bed on her own and needs full assistance to do so but Megan does leave her bed and accompanies us on family outings, goes in our pool and enjoys as much time as possible out of her bed.  She is unable to attend to herself for any daily activities of life and is a "full assist" patient.  If she NEVER left her bed what would be the point of having her at home - that is the care she would receive in a nursing home if I did not have the level of nursing care I needed to keep her here so she has a quality of life.   In a nutshell this is the reason that this is so important to our family personally. 

I thought it could be misconstrued this way to others as well.   I realize we covered a lot of ground in a short period of time and if it did not tie back to the reason of in home vs. nursing home I would not have even emailed about it. 

Please feel free to contact me with any other questions or comments. 

Sincerely,

Terri Garrett

Today's front page

http://www.tampabay.com/news/health/medicine/families-grapple-with-shrinking-state-services-offered-to-medically/1251941

Families grapple with shrinking state services offered to 'medically fragile' kids

By Stephen Nohlgren, Times Staff Writer
In Print: Monday, September 17, 2012

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Home health nurse Linda Debello holds Megan Garrett upright as she tries to help her cough and clear chest congestion.
	[DANIEL WALLACE | Times]

Story Tools Print this story Purchase reprints Contact the editor Email Newsletters Previous PhotoNext Photo [DANIEL WALLACE | Times] Rather than toys or clothes, the dresser drawers next to Megan’s bed are filled with medical supplies.

We call them "medically fragile'' children, but labels don't begin to convey the help they need to survive.

Josiah Conway, 9, sings karaoke and can zoom through an iPhone, but dozens of complications might close his airway at any moment. He stopped breathing earlier this month when medication with strawberry flavoring triggered one of many allergies.

Megan Garrett, 6, wastes away from a degenerative cell disease, has daily seizures and never leaves her bed. She smiles at her mother's touch, but if her finger happens to land in her mouth during a spasm, she will bite down on it and scream in pain, with no idea why.

These could be anyone's children, whether from genetic defect or too many minutes at the bottom of a swimming pool. And with nurses, machines and medicines for one child costing as much as $200,000 a year, lawmakers decided that taxpayers should often help pick up the tab.

Now, however, Washington and Tallahassee are locked in a legal showdown over Florida's commitment.

In a letter this month, the U.S. Department of Justice accused the state of routinely reducing home care and steering too many kids into nursing homes. If Florida keeps this up, the letter said, the federal government may sue.

Florida is holding firm, saying that it provides all the care the law requires. If any child is underserved, the state says, let us know and we will fix it.

Meanwhile, frazzled parents just want to get through another day.

Megan "knows she is loved and she loves us,'' Temple Terrace resident Terri Garrett said. "And that makes a huge difference in her will to be here.''

Out of a nursing home

Andi Cali, 6, lost much of his brain function as an infant when he nearly drowned. After his family moved to Spring Hill in 2009, Medicaid paid to keep him in Lakeshore Villas in north Tampa, one of six Florida nursing homes licensed to take in children.

It didn't come cheaply. Like Andi, many of the children are kept alive by feeding tubes and breathing machines. The state requires twice the skilled staff for children as for adults and will pay roughly $200,000 a year, more than double the adult rate.

For three years, Zurale Cali, now 39, would drop her two older children off at school and drive an hour to Tampa to spend the day talking to Andi, massaging his limbs and wheeling him into the garden.

She asked for a nurse at home, but the company that manages Medicaid's funds offered only eight hours a day, she said. That might let her sleep at night without worrying that Andi would choke to death from reflux. But by day, she would have to work the machines herself.

Cali is a stay-at-home mom; her husband works in construction.

The Americans With Disabilities Act requires that people like Andi be treated outside institutions if possible.

So Cali sued and won.

Three months ago, she brought her son home with 24-hour nursing care.

Andi now goes out in a wheelchair, goes on outings with his older brothers and sometimes visits the swimming pool. He also seems more alert.

"He moves his eyes left and right following you,'' his mother said. "He can squeeze your finger and moves his hands more than he did. He smells everything. When he is sleeping and you touch his mouth with meat or egg, he wakes up.''

She wonders if he would be more advanced if she had him home from the beginning.

"I feeling like I am really starting over,'' she said. "I'm just trying to forget the last five years.''

Battling over bills

As of last week, only 221 medically fragile children were living in nursing homes, many of them foster children without parents to take them in.

A few thousand other children are living at home, with parents and the state jockeying once or twice a year over how much help Medicaid must provide.

At-home cost averages about $95,000 but can be much higher for the sickest.

Florida Medicaid pays agencies $23 to $29 an hour for licensed nurses. That labor plus equipment can make 24-hour care more costly than a nursing home.

So Medicaid pays a private contractor to review doctor-prescribed care plans to make sure they are "medically necessary" — including whether family members could double as nurses.

Parents and advocates say with almost every review, the state's contractor denies or reduces nursing hours it pays for. Parents adjust or embark on time-consuming administrative appeals.

"If they got 15 hours last month, they will get 14 hours this month,'' Florida State University law professor Paolo Annino said. "And the thing is with these families, these children don't get better. The justification is that the parents can do more.''

Annino's students have filed about 20 appeals for parents, winning some and negotiating settlements in others.

"These parents are at the end of their strings,'' he said. "A child is on a ventilator, and Medicaid wants to eliminate the nurse and have the parent run it. They are not technologically oriented. I have a hard time changing movies on a VCR. Imagine that your kid is suffocating and you are having to deal with his life support equipment.''

Figures provided by the Agency for Health Care Administration paint a less contentious picture.

About 4,500 plans were reviewed this year, with about a third resulting in fewer hours, the state said. After 365 of those parents appealed, the state prevailed almost half the time.

Plant City resident Josiah Conway had multiple physical complications from birth, including Down syndrome. He underwent 22 surgeries in nine years.

The main problem is keeping Josiah's airway open. He is allergic to so many antibiotics he can't use a ventilator or have a tracheotomy, said his mother, Leslie. Allergic reactions inflame his throat until it shuts. So far, he tolerates only 12 foods.

For a while after birth, the Conways had no help. They slept with Josiah on their chest, waking every five minutes or so to make sure he was still breathing.

"My husband lost a couple of jobs; we were so sleep deprived and calling 911 multiple times a week,'' Conway said. "I had migraines for a year and a half.''

With so much focus on keeping Josiah alive, two older children "lost their parents,'' she said. "They stopped going to church. People stopped coming to the house because he had an immune disorder and the house had to be totally germ free. The kids stopped being involved in Boy Scouts or Girl Scouts.''

Medicaid stepped in after a few years, but then the cuts began. Of the 12 review letters Conway found this week, 10 called for fewer nursing hours, she said. One 2010 review called for a total denial of benefits. She fell apart, crying uncontrollably, and checked herself into a mental hospital.

After the Conways joined a class action lawsuit last year, a judge banned further cuts until the suit is resolved.

Josiah now averages 18 hours of care a day, including a nurse who accompanies him to Robinson Elementary School. He's in the third grade.

Dueling sides

On Sept. 4, Assistant U.S. Attorney General Thomas Perez wrote to Florida Attorney General Pam Bondi, instructing the state to provide better care for medically fragile kids.

Too many are in nursing homes, segregated from society and receiving only 45 minutes of education a day, Perez said, citing visits from Justice Department officials.

The average nursing home stay was three years. Some children had lived there a decade.

Meanwhile, one program to keep kids at home had 20,000 families on a waiting list, he said.

Florida's lawyers disputed those findings Friday in a return letter to Perez.

The state "fully complies with all laws and regulations,'' the letter said. If Washington would share its interviews with families, "we believe the state can clarify any misinformation.''

In Temple Terrace, Terri Garrett dreads her next review and worries Megan's hours will be reduced.

She still bristles at a reviewer's question a few years ago: Haven't you adjusted yet?

"I've adjusted to the fact that my daughter is going to die,'' Garrett said. "I've adjusted that my life has changed all around and my children's lives too.

"I thought if you needed help, it wasn't going to be a bunch of red tape and ropes and fighting.''

Respiratory Infection Already?

It is September 12 - way too early for Meg to already be starting up with respiratory infections.  First one hit on the 10th.  She was find at 2:00 pm and by 3:00 pm she sounded like a freight train was in her chest.  Immediately started the extra CPT, nebs and vest treatements.  To no avail....
At 2:30 am she was desaturating and her heart rate was skyrocketing.  Oxygen in the low 80's and heart rate in the 130's while sleeping.  Popped on the nasal canula and O2.  Got the oxygen back to high 90's and heart rate to around 100 at 2 liters.  Of course the fever was right after that.  She was due for her immunoglobulin infustion on Wednesday but I stuck it in and pumped her full of some antibodies a day early hoping to boost something.  That, some extra vitamin C and a fresh blueberry (antioxidant) tube feeding...try everything and anything, right?

We arrived at PCP office at 10:30 am and got our "favorite" Rocephin injection in the leg.  Ouch.  Usually Megan screams like a mad cat when that gorilla juice goes into her tiny little leg but she was so lethargic and wilted she just blinked really hard and made a moan.  

She was off the 02 by the afternoon and we kept up the albuterol nebs and vest treatements.   Last night she did not need to go back on which is awesome and sooooo relieving.  Trying to decide if we should get a second dose of the juice  -  it cant really hurt her but is it too much?  Want her to continue to heal but dont want to clog her up with a/biotics and the side effects from those either.  Oh - what to do?????

Voicing it - kind of

Mrs. Garrett:
John Romano forwarded your email to me. I am a news reporter for the Times
and trying to figure out how we might follow up on this issue.  We are
getting similar emails from other parents.

Would you be willing to have your and your daughter's story told in print,
with names and photographs?

And I am just getting up to speed here. What is the six month review you
are referring to?. Can you summarize what it is and why it is so arduous.

Thank you
Steve Nohlgren

________________________________________________________________________

Dear Steve:

I absolutely would be willing to have our story told.  We have been in print before while fighting to get care for Megan.  

The six month review I referred to is what is known at the "recertification" that is conducted by the state appointed third party administrator (EQ Health).  

Every six months the case is reviewed to determine as they refer to it "the appropriate level of care for the child".

In our case the documentation they request is repetitive and reoccurring.  Essentially they ask you to recreate the wheel over and over again which to me is a huge waste of time and money that could be used better to provide the appropriate care and resources - example - more nursing hours where they really are needed.  With the exception of one recertification we have always received a denial or decrease of some sort which then leads to the appeal process.  Whether or not it reaches the formal hearing process depends on what the TPA comes back with when they review it AGAIN. Of importance many families do not have the ability or resources to fight this battle while surviving and caring for their child and/or other children and family to maintain normalcy.  The entire recertification and appeal process is so arduous that it tasks the family emotionally, physically and monetarily as it takes time away from your job and other responsibilities.  Personal and Work schedules for every member of your household is necessary to document your life activities otherwise they are not considered.  I could explain more on this verbally as there is too much to write. Sidenote - I did not know this upon my first review or when certifying with AHCA for services in general.  It was all about my daughter for the approval of medical necessity which is different from the number of hours.   In our case the prognosis is not going to change so why not have annual review to make sure all of the previous approved services are still warranted.   If I felt that something changed for the worse and I needed to ask for more in the course of time between recerts I would ask and document it regardless of what the stated recertification time is.  I think that is what they ask you to do anyway regardless.  However I do realize that there are cases that warrant a six month recertification.

Why does the state think the staff employed by the TPA  is more qualified to say what amount of care a child needs instead of the physicians and specialists that actually know and treat the child?  One question I had at a formal hearing that lasted approximately 3 hours in person to the "certified" physician employed by the TPA was:  "Are you a specialist in my child's field of medicine?"  The answer was no which I knew as there are literally a handful in the ENTIRE country.  It would be like hiring an electrical contractor to assess a roof.  

Megan has at least a dozen specialists that all have different areas to address.  GI, Cardiology, ENT, Pulmonology, Nuerology, Audiology,  Nutrition, Orthopedics, Physiatry, Primary Care, Metabolic and Mitochondrial specialist, etc.

For my specific case the level of care will not decrease as my daughters disease is neurodegenerative, progressive and chronic.  Prognosis is set.  Sadly there will never be improvement and there is no cure.  I wish I could say differently.  It is not a situation we relish or delight in.  Receiving the "appropriate" services is not a luxury as much as it is a necessity for survival and quality of life for my daughter and the rest of our family.  Remaining productive and successful in our life is what is necessary for all concerned and what is best for the state.  If we are taken out of productivity then we are a burden on society - all of us.  I would like to point out that my personal circumstances do not make us reliant on the state plan to assist us in any other areas of any of our needs. We even have primary health insurance in place for Megan and the state plan is secondary for the items that they will not cover - such as the nursing for Megan and her therapy when my primary plan is exhausted. 

Please feel free to contact me.  I appreciate your inquiry and interest on this topic.

Sincerely,

Terri Garrett

It has been a whirlwind of a summer.  I can't believe it is over and school starts next week.  Although I am ready for the boys to go back to school I am not ready for the routine of it all.  We had an awesome summer.  Being able to go on vacation with a pretty healthy, happy Megan is definitely a highlight for me.  I was able to actually relax and take it all in.  From the roadtrip up north to Fire Island and the roadtrip back it was all around great.  I never would have imagined Megan to be such a great long distance car traveler considering she usually starts freaking out 30 minutes into any drive. I think she knew it was a fun trip - not a Dr. appt!!!! 
She has finally gained 2 pounds since the start of the whole GI stimulator in February.  May and June were really bad and I was freaking out thinking that maybe this thing was like everything else - good at first and then somehow her little body just rejects it.  I thought I was going to lose my mind actually.  Palpitations, sweats - all of it.  My prayers were answered and it kicked in somehow over vacation and has been going well.  I did change everything about her med schedules and feeding times to capitalize on more feeding.  Aggressive surgery - aggressive changes.  24 meds are not simple to just flip around and rearrange.  Some interact with others and some it is hard to alter the hours so it has to happen slowly so her body didn't go into withdrawals or overdose mode.  It all worked out though.  I actually have a little pinch of flesh on her thighs for her sub Q IG infusions.  It was killing me to look at her bones in her back and her pelvic area - they stuck out like a cadaver.  Just two pounds has made a difference.  I tell her if she doesn't watch it I am going to have to put her on a diet to keep her booty from getting too big.
Her reflux is still a nightmare - but one thing at a time. 
Life is calling.   Have to write more later.