Tag Archives: Louisiana

Rep. John Fleming of Louisiana is a perfect example of what’s wrong in D.C.

Unknown-1Representative John Fleming of the fourth district in Louisiana is extremely opposed to medical cannabis. While he does see a place for pharmaceutical versions such as GW Pharma’s Epidiolex, marijuana scare tactics appear to be a major part of his agenda and he has no interest in helping desperate parents save their seizing kids. He has no problem with dying children waiting while researchers fight through the tangle of red tape that is marijuana research and the lengthy process that is FDA clinical trials. Oh, those trials have been fast tracked and we can get into studies (sound familiar, Rep. Sharon Cooper?). Never mind that most of us can’t get into those studies. Connor doesn’t qualify with TSC, and even parents who have children with the requisite syndromes are unable to find openings. FDA fast tracking just means they shave some years off the years it will still take to approve it (Connor’s most effective med, vigabatrin, had its first clinical trials in 1979. It was approved in the States in 2009, years after other countries made it available).

Rep. Fleming is very, very worried about recreational use. Our children are nothing but Trojan Horses (his words) used by those who want full legalization for recreational purposes. He is so worried about recreational use and the fear that someone might find a way to use medical cannabis for fun, that he is willing to sacrifice the lives of sick and dying children. He is not interested in hearing our stories of our children that need it or those that are already benefitting from high CBD strains and THCA in legal states. He voted against the recent Rohrbacher amendment to prevent funding the DOJ for raiding state medical marijuana programs. In fact, if you try to tell him about your child on his Facebook page, he will delete it. He can’t have the public know who he’s hurting with his over-the-top antics.

IMG_0964It’s his Facebook page that brought him to my attention, as well as to the attention of some other parents dealing with seizure disorders. He had posted about a speech he gave on the dangers of marijuana so several of us posted on the thread. Many of our comments got deleted. Several of us are blocked from commenting further. I will say, in the interest of full disclosure, that perhaps I implied I had doubts about his abilities as a medical doctor since I came across an article about how he blocked doctors from being able to discuss the medical marijuana option with veterans because he didn’t want them exposed to an addictive, harmful substance. Yet you never see him express any concerns about the highly addictive, dangerous nature of many pharmaceuticals. Prescription pain pills are some of the most highly abused drugs, but that doesn’t concern him. But I don’t think I got deleted and banned because I might have come off as insulting (there was no swearing or name calling). I think I got deleted because I talked about my kid and about how dangerous one of his prescriptions is. (And to be clear, I am not part of the anti-pharmaceutical movement, nor do I believe that marijuana is a cure for everything or that it will work for everyone. I think pharmaceuticals have their place alongside options like cannabis. I just ask that my zip code not determine my access).

I’m not the only one. Several people who talked about their kids got deleted. Interestingly, he started debating with one of the parents–also a doctor –and did not delete or block him. However, he DID delete a link to a YouTube video that this father had made about his daughter and medical cannabis to educate the public. Interesting. Rep. Fleming is so passionate about Facebook page maintenance that he even stayed up until midnight on a Friday to edit, delete, and condescend. Yes, condescend. You may wonder why I find this particular representative so interesting when he is obviously not the only one who opposes helping our kids. Well, though I was blocked, I still found myself quite fascinated poring through his page. It became clear that his page serves no purpose but to rile people up and be divisive. It’s not even about whether I agree with his views or not; it’s that he clearly uses it as a tool of stirring discontent. Don’t get me wrong. I pretty much expect to see Obama-slamming on most GOP pages, just as there is some over-the-top Obama adoration on the pages of many democrats. But I looked over a few other pages from other parties and none gave me the same disturbing hateful feel that I got from his. I expect these pages to have opinions and criticisms. But what I found from the other ones I looked at is that I could also find positive comments about something they were involved with, or that I didn’t have to scroll far to get an idea of legislation they were involved with. Fleming, on the other hand, just seems to bitch and moan. I know his opinions, but very little of what he’s doing about it. Those posts are good and buried. I’m in no way saying he is the only one who behaves like this, but there are just too many people in Congress for me to look at all the pages. I looked at four other Republicans and four Democrats just to see if this is the norm, but saw nothing like this. All the pages are going to have rude comments from the public…the difference is that most of these other pages don’t seem as heavily moderated in that area. So when you make a point to delete and moderate heavily, you are implicitly showing support for what you leave in view.

What I found especially interesting is the way he chooses to interact as an elected official. I’m sorry, but our representatives should set an example of decorum. You are going to have rude comments on social media, and there is a line people can cross where you are well within your rights to delete. But he’s deleting to twist the story and those that get to stay, but disagree with him, get a condescending attitude the likes of which I’ve never seen.

Here are some screen shots from the medical cannabis discussion with parent of sick children. He keeps talking about legalization, though many commenters are focused on rescheduling. He’s also completely in the dark it would seem about how damaging the schedule 1 status of marijuana is on research. But he won’t be told otherwise!

This flat out lie:

IMG_1063


And excerpts from last weekend’s marijuana discussion in which it was necessary to talk down to and insult parents desperate to save their kids. I’d tell you to check out his page to get the full conversation, but alas he is forever editing and deleting. Who know what’s missing and edited by now.

Excerpts with one dad.

IMG_1109

IMG_1110

IMG_1103

Excerpts with another dad.

IMG_1104

IMG_1105

IMG_1106

IMG_1099

IMG_1100

Please keep up with developments? Really? By the way this dad is the doctor I mentioned earlier. The other dad’s response to Fleming’s endless egocentrism.

IMG_1101

IMG_1102

Once again, Dr. Fleming, learn the difference between rescheduling and legalization.

And the one I take very personally because this mom has a child battling the same disorder. (Update: Since I first posted this, Rep. Fleming has removed all the comments by this mother, yet left his own responses).

IMG_1133 IMG_1134 IMG_1135 IMG_1136 IMG_1137 IMG_1138 IMG_1139 IMG_1140 IMG_1141 IMG_1142I simply must interject here…They will just GIVE US the medication if our kid is going to die? Just like that. Anybody remember Josh Hardy who made the news last March? He is seven. The pharmaceutical company denied him compassionate use. They didn’t reverse their stance until the public pressure became too overwhelming. Rep. Fleming truly lives in his own world–a world where pharmaceutical companies give people drugs when we say “pretty please with sugar on top.”
IMG_1144
IMG_1146

Not one ounce of compassion in that entire thread.

For the love of God, why can this man not make the distinction between legalization and rescheduling?

Yeah, pretty sure we explained that (in now deleted comments) that this wasn’t an option for everybody and some kids will be dead before Epidiolex goes to market. Not to mention, Epidiolex is one particular formulation. It’s not necessarily the same as what some of the kids are responding to. It may work for some, but others will need whole plant medicine.

IMG_1107

IMG_1096

Like I said, he loves to delete.

IMG_1108

IMG_1098

So some of the parents got to stay and debate with him. I guess those of us that were deleted didn’t have anything constructive to say. So in the interest of helping others, I’m going to share some screenshots I took from other threads on different topics so that you will know what Rep. Fleming considers positive contributions to the discussion should you wish to engage without being banned. And please know that in an older thread, he has stated that cursing and name calling won’t be tolerated. But I guess that’s only if it’s about him.

IMG_1072

IMG_1071

IMG_1070

IMG_1068

IMG_1067

IMG_1073

IMG_1065

IMG_1064

IMG_1151

Though some who don’t know me may assume I’m targeting him because of his party, that is absolutely not the case. If he had come to my attention as a Democrat behaving in this manner–I’d say the same (I float somewhere in the middle annoyed by extremes on both ends). He’s a perfect example of what we don’t need in D.C. making decisions for people. Someone who makes it very clear that he can’t and won’t work with his colleagues unless they tow his line and won’t listen to the other side of the story. He’s there to represent his own interests. I actually found in Georgia that the bipartisan support for our kids was amazing.

But perhaps I’m being unfair. He does get his information from reputable sources.

john_fleming_screengrabPlus, Rep. Fleming has but this one request.

IMG_1074

Of course, don’t expect HIM to abide by it.

IMG_1093

IMG_1090

IMG_1092
IMG_1089

IMG_1088

IMG_1087

He really can do it all. He gives grammar lessons.

IMG_1086

He’s a Biblical scholar.

IMG_1085

A civics professor.

IMG_1084

Hmmm…be a statesman…good point.
IMG_1081His response:

IMG_1082Historian.
IMG_1079

Economics professor.IMG_1078

He gets by with a little help from his friends.IMG_1077

I just wish he cared as much about the kids that have been born as he does the ones that are in utero.

Maybe it’s time Dr. Fleming goes home to Lousiana and focuses on his 36 Subway sandwich shops in North Louisiana.

We all have our beliefs and biases, and hey, I don’t necessarily like all the people being referenced here either, but if this is how you think a United States representative should conduct himself, you need to reassess.

 

Please check out this YouTube response some parents put together for him.

Advertisements

From Reflux to TSC

Second Annual “Blogging for TSC Awareness Month” Day 20

by guest blogger Melissa Marino  (New Orleans, Louisiana)

photo-4-1Our story began in November of 2012 when we found out that we were expecting our first child.  My entire pregnancy was a breeze, no morning sickness and no complications.  Every ultrasound was absolutely perfect and we could not wait for our bundle of joy to arrive.  Carter was born on July 11, 2013 weighing 6 pounds and 13 ounces.  He was the most beautiful thing that I ever laid eyes on, with his perfect bald head and big chubby cheeks.  The first two months were great and he was the happiest, most laid back little boy in the world.  In September, shortly after turning 2 months, I began to notice that something was not right with him.  He would squint his eyes and his right arm would raise into the air.  This happened in clusters several times a day.  I immediately took him to the pediatrician and she referred me to see a neurologist at our local hospital.  I called that day to schedule an appointment, explaining to them that I believe my two month old is having some sort of seizures.  I was given an appointment four weeks away.  Seriously??  I am telling you that my baby is having seizures and you politely say that you can fit him into the schedule in four weeks???  I was devastated, so I started doing research using google and the more I read, the more anxious I got.

After about a week of him having these episodes, I finally had enough so we headed to the emergency room.  The first thing they told me was not to worry, it is probably just reflux.  I was not settling for that answer, so I demanded that they watch the videos and check him out anyway.  Finally they ordered an EEG, and sure enough the EEG showed that he was indeed having seizures along with an abnormal heart rhythm.  That evening, cardiology came in and told me that Carter has Wolff Parkinson White Syndrome. After a couple days in the hospital, they finally took him down for an MRI.  The next morning, the results were in and his MRI was normal.  The doctor explained that since they could not find a cause for his seizures, there would be a good chance he would grow out of them.  Carter was started on Phenobarbital, which did not work.  We were sent home on Keppra and Topamax, but the episodes continued.  We went to our cardiology consult where they did an echo of his heart and everything came back fine.  The WPW wasn’t causing any photo-3-1symptoms and his heart structure was perfect.  I took him back and forth to the hospital for constant EEGs and everyday his seizures were only getting worse.  Come October, we were back in the ER.  The weird arm movements finally stopped, but now he was having full tonic clonic seizures.  I just could not understand what was happening to my baby.  His blood work was always normal and his MRI was normal, so again they had no answers for me.  I finally agreed to let them do a lumbar puncture on him — at this point we were reaching for any answers.  Yet again, another normal test result came back.  His tonic clonic seizures continued to increase every day and Vimpat was added, which of course failed.  They finally decided to give him high dose steroids through his IV.  He would get a couple rounds of Solumedrol and we would take him home on a Prednisone taper.  This combination would decrease his seizures by about 80%, but they would always return within two months.

He was developing and reaching his milestones through all of this, but at a much slower pace than normal.  No matter how hard things got, Carter always kept a smile on his face.  After failing all these medications, Carter was started on the Ketogenic Diet. Unfortunately, by the third day of the Ketogenic Diet, his seizures had tripled.  He was having 40-50 tonic clonic seizures a day, so they immediately discontinued the diet.  Onfi was now added on top of everything else.  With every failed medication, my heart broke even more and I finally started to lose hope.  So much for him outgrowing these seizures right?  The neurologist decided it was time to do a genetic test, but she explained that she really did not expect to find anything.  She just wanted to check everything before putting him through a muscle biopsy.  She explained that they were looking for Epileptic Encephalopathies, but Carter did not seem to have any of them.  Those six weeks were the longest weeks of my entire life.  While we were waiting for the results to come back, Carter again developed a new type of seizure.  The tonic clonic seizures had pretty much disappeared thanks to the Onfi, but along came the head drops and spasms.  So now Banzel was added to his long list of medications.

photo-180In March of 2014, he was 8 months old and we finally received a diagnosis of Tuberous Sclerosis.  My heart was shattered; I was confused and angry.  How could six months go by and not a single person figure this out?!?!  Well here is the reason, his heart is normal and as of now, his MRI is normal.  He has no signs of TSC except the horrible seizures that do not respond to medication.  He has had two scans of his kidneys, which both came back normal.  Since he was a little older and we now had a diagnosis, another MRI was ordered.  The results came back within a couple days and we were once again normal.   Just recently, he started to develop white spots on his skin.  Anyways, back to the dreadful journey.  So now at this point, he is on seven medications including 250mg of Sabril that he just started.  The head drops are getting worse, the spasms are increasing and my happy baby is now miserable all the time.  So again, I take him back to the emergency room and they give him IV Solumedrol to slow the seizures down.  The steroids always seemed to be a miracle drug, but it did not work for these new seizures.  The seizures were getting worse, his entire personality was gone and all we could do was cry together.  I asked on several occasions if he was having Infantile Spasms, but I was quickly assured that it was not IS.  I went back and forth between doctors and the insurance company trying to get him out of state to a TS clinic.  My everyday life consisted of waking up and arguing with someone all day, which only added to the stress of taking care of a very sick baby.

The reason why I decided to tell our story is because I want to pay it forward.  Only four weeks into his diagnosis, I decided to reach out and ask for help through a support group on Facebook.   I knew he needed to be at a TS clinic and I was fighting everyday to save my baby, but I was also losing hope at the same time.  I wanted to know what was so different about a TS clinic?  Can they really help him?  If he had already tried every medication and failed the ketogenic diet, what else could they do?  A very special lady reached out to me and convinced me to get him to Cincinnati right away.  How was I going to do this?  I have been fighting my insurance over a referral for weeks now!  She put in a call for me and within 24 hours, I received the call from Cincinnati.  I could not believe what I was hearing when they told me “Just get him out here and we can handle the referral from here.”   I started a fundraiser and within 24 hours, we raised enough money to cover the very expensive last minute flights.  It could not have happened at a better time because two days later, Carter’s condition took a turn for the worse.  We changed our flights right away and the next day, we were on a plane heading to get my baby the help he needed.  When we arrived, Carter had his first 24 hour VEEG and his medications were changed immediately.  Just when we thought things couldn’t get any worse, we were informed that Carter did in fact have Infantile Spasms.  Being a new TSC mom and having someone keep telling me that it’s not, I eventually started to believe it.  Well at least a part of me did, but my mommy instincts still said that something was not right.  I suddenly felt relieved that someone had an answer and we were finally in the right hands.  All of my hard work, photo-2-1along with the help of some pretty amazing people, had finally paid off.   It has only been two weeks since all of this happened and his seizures are still not fully controlled.  He still has his good days and bad days, but we work together everyday by phone to coordinate his care.  Since being home from Cincinnati,  he has started to smile again and for that alone, we are very thankful.  The point of my story is, sometimes you have to fight for what you believe and stand up for these innocent babies who can’t defend themselves.  Always trust your mommy instincts and follow your heart.  If you feel that something isn’t right with your baby, it probably isn’t.  Through this journey, I have learned that we are not alone and there are still some pretty amazing people in this world willing to help.  Without the support of my friends and family, I would have fallen apart by now.  I have also gained an entire new family over the past six weeks, my TS family, and their encouragement and inspiration is what helps me through the bad days.  It takes 100% of a person’s time to care for these unique babies, but somehow everyone manages to still help each other.

Not knowing what the future will hold for my baby is probably the hardest part of this journey.  I walk on egg shells each day just waiting for the next catastrophe to come along.  Of course, I hope and pray every single day that my Carter will stay strong and fight his way through this.  But there is one thing that I do know, no matter what happens, I can look at myself in the mirror and know that I did everything that I could to help him.  I gave up everything just to spend every moment with him, I struggled to get him the best care available and most of all, I make sure that he knows just how much I love him!

 

Why We’re Thankful for TSC

Day 17 of Guest Blogging for TSC Awareness Month

By Guest blogger Catrina Jones  (Monroe, Louisiana)

Note from Mixed Up Mommy: This was originally a Facebook post in the TS Alliance forum. I asked if I could share it here because I think it’s such a great story.

Hannah in August 2012.
Hannah in August 2012.

My daughter Hannah Grace, now 11 years old, started having infantile spasms at 8 months old. After an EEG was performed, it was determined that she had idiopathic benign occipital epilepsy. We were then referred to a local neurologist a month or so later, who ordered MRI/Brain prior to our appointment. I will never forget the day I received the call with the MRI results from the neurologist’s office where the nurse told me over the phone (while I was at work) that it was suspected our daughter had tuberous sclerosis. She said I needed to pick up the film and report to bring with us to Hannah’s appointment, and the doctor would discuss this further. When I asked her what tuberous sclerosis was, she could not tell me and informed me that the doctor would have to give me that information. I was in such shock and dismay that I dropped the phone at work crying, and a co-worker had to finish the call with the nurse. This co-worker immediately went to the internet and pulled up a fact sheet about TS and began reading it to me. After I composed myself, I called my husband and the rest of our family with this news of our daughter having something we had never EVER heard of. I remember having this huge fear of the unknown. When we took Hannah Grace (who was 11 months old at this time) in to the appointment, the neurologist said that he wasn’t sure 100% she had TSC because of lack of other symptoms, but when he started naming off things associated with TSC, the white patches were present on Hannah Grace. He took the woods lamp and inspected Hannah Grace, and to our surprise, she had a LOT of them on her body. He then said he had to concur that she did have tuberous sclerosis. As for her infantile spasms, he ordered her phenobarbital. Later on, her IS started developing into partial seizures so Tegretol & Topamax was added to control those.

So, with the new diagnosis of TSC, began a life of yearly testing and doctors visits. Since Hannah Grace was so young when she was diagnosed, we were unsure of the severity of her TSC. Did she have a mild case or was hers more severe? She was meeting milestones at her regular pediatric checkups, so we were hoping that by controlling the IS, just maybe she would live normal life. She does have some mild developemental/learning/cognitive delays, but at 11 years old, she is pretty much living a normal life that TSC says she should not be living. She has been seizure free for eight years now, and we could not be happier with her progress and accomplishments . She has overcome so much in her life. But our story doesn’t stop there.

Where most of you hate/despise TSC, our family is THANKFUL for it. You see, it was because of Hannah Grace having TSC that we went to her yearly checkup with the neurologist this past July. Actually, it was a six-month checkup, because we had been weaning her off of Topamax, since she has been seizure free for so long. The neurologist always runs labs to check her medicine levels. Those labs that day came back to show Hannah Grace had extremely low white blood counts, and it was thought she was developing a virus. We were told to take her to her pediatrician for a followup to let them check her for mono or other viruses. We went into the office the next day, and they re-ran her labs to find that her counts had dropped even more. They tested for numerous viruses and all came back negative. We were sent home in hopes that she had some type of virus that she would rid itself over the next week, and were told to come back later for repeat labs. The following week, her counts were even lower than the week before. The pediatrician was baffled because Hannah Grace showed no signs of being sick, yet her counts continued to decline. We were sent home under strict isolation and told if she developed a fever to get her to the ER. That night brought the fever and an ER visit. She was admitted to the hospital where our new journey was just beginning.

For two weeks in the hospital, Hannah Grace fought extremely high fevers, developed a rash, and her chemistry levels began to fall. She eventually ended up in PICU, where the

A recent photo of Hannah Grace.
A recent photo of Hannah Grace.

MD told me she was critical and needed to go under a pediatric hematologist because her counts had bottomed out. It was determined that we would be transferred to a Baton Rouge Children’s Hospital under the care of a hematologist. When we got there, they believed she had an infectious disease, so tests were run for every infectious disease/fungus there was, and everything came back negative. After a week of this, a bone marrow aspirate was done August 7, 2012, and we were told on August 8, 2012 that Hannah Grace had acute lymphoblastic leukemia. OMG, for a second time in our lives, we were hit with devastating news. Our little girl has cancer. The last ten months of our lives have been spent at St. Jude Children’s Research Hospital & Affiliate fighting leukemia. I would give anything in the world if I could go back in time to the days of her having to deal with just TSC. TSC we were managing and doing well. Hannah Grace is in remission, but she will have to be in treatment for the next 2 1/2 yrs to make sure she is completely cured of leukemia. This road has had many difficulties, but we are most THANKFUL that St. Jude has decided to help treat her TSC along with the leukemia. This week, we came back St. Jude because they started Hannah Grace on Rapamune (Sirolimus) to try to shrink the SEGA and other tumors she has throughout her body (mostly on her brain & kidneys). We are so THANKFUL to have this opportunity, where we probably wouldn’t have had it back home in our small town. God works in mysterious ways!

We invite you all to checkout our pages at:

https://www.facebook.com/LouisianaTuberousSclerosisPage

and https://www.facebook.com/HannahsHopeForHealing.