Friday, February 27, 2015

It's the Little Things

Before Ronan got sick, he used to watch the So Smart! videos.  We'd watch a few minutes of one of the three in the series that we owned after bath time when Ronan was a baby.  So Smart! Volume 2 was an all-time fave.  

Fast forward to about a year ago...Ronan discovered clips of the So Smart! series on YouTube.  Oh, the joy that those clips and images evoked!  Ronan was mesmerized.  He was relaxed.  He was so, so happy.  

A few weeks ago, Ronan searched for some of the images from some of his favorite scenes.  Not surprisingly, he found quite a few of them online.  When Ronan wants to do something, he figures out exactly how to do it.  

When Ronan found the black fish image, he brought the iPad to me and signed 'black fish'.  Since he'd been looking for that image for quite awhile, we saved the image to the iPad photo gallery.  Sadly, the image was accidentally deleted about a week ago by one of the siblings.  We hunted and hunted and searched and searched all over the net to find it again.  

No joy.  

We couldn't find it anywhere.  

Until today.  
So Smart!
I printed the image and saved it again.  We'll laminate the picture, too, so it can last a little bit longer. Ronan is signing 'thank you' for black fish picture.  I printed Cecil the Circle on the page too because he love, love, LOVES Cecil too.  

Thank you.  Thank you.  Thank you.  
The So Smart! movies are geared for younger children - from babies to preschoolers.  Ronan is so much older than the age ranges suggested, but I have a feeling that he's drawn to the movies because he remembers watching them years ago when he was healthier, when things were easier, and when things were a lot different than they are now.  When he watched them years ago, it was right before he lost skills, skills that he'd already mastered.  It was was right before he lost his speech.  It was right before he went silent.  

Ronan can get fixated on certain things from his past, like the black fish, but I am always able to draw our more communication opportunities with him when we are using his favorite books, movies, pictures, and words.  Using what's familiar and using what motivates Ronan opens more learning moments.  Those learning moments don't just help Ronan, they help me as well. 

So Smart! brings Ronan back to a different time.  It brings me back memories for me also.  It brings back memories of when I wasn't as smart about my children's health as I am today.  Over time, through experience, and little by little, I learned.  I learned some things too late and will always wish that I knew more back then.  But thank goodness I learned what I did.  

The past, as hard as it is sometimes to think about it, has shaped much of what I do now for my children and for their health.  I will always be grateful for that.    

xo, Cat


Monday, February 23, 2015

10 Things to Know About Vaccines

* The topic of vaccines has been in the news quite a bit.  Vaccines are a medical procedure that are often referred to as safe and effective even though the Supreme Court ruled that they were unavoidably unsafe.  

* Before a vaccine is administered, the Vaccine Information Sheet is required to be given to vaccine consumers.  It is a sparse 2 pages.  Vaccine package inserts, when printed, can exceed 20 pages.  The inserts cover topics such as contraindications, warnings, precautions, and reported adverse reactions.  




* Vaccine ingredients include, but are not limited to, formaldehyde, aluminum, thimerosal, live viruses, human diploid cell cultures, and DNA from animals.  

* A $0.75 tax is collected on each vaccine dose.  That money goes into the National Vaccine Injury Compensation Program fund.  

* The National Vaccine Injury Compensation Program fund has paid out over $3 billion to individuals who have been harmed by vaccines and to families whose loved ones have died from vaccines. 
* Vaccines come with side effects.  Side effects can be mild to moderate to severe to include death. 

* When a vaccine causes an adverse reaction it should be reported to a medical provider. The provider should then document the reactions in the Vaccine Adverse Events Reporting System.  

* Vaccine consumers cannot sue pharmaceutical companies when a reaction happens.  The government allows those companies to operate liability free.  

* In some states, those who cannot be vaccinated, and those who wish to not be vaccinated, can opt out of vaccines.   


* As of this writing, about a dozen states are proposing taking away vaccine choice from the public and removing available exemptions.  Depending on which state you live, three kinds of vaccine exemptions exist:  religious, philosophical, and medical.  

This list included only ten things to know about vaccines.  If vaccines are in your future I’d encourage you to read more about them.  Discuss them with your provider.  Understand the process.  And remember that vaccines, like other pharmaceutical products, can come with risks. 

xo, Cat


Saturday, February 21, 2015

An Emotional Toll


With how charged vaccine news has been lately, I've wanted to chime in and respond several times to what I've seen, read or heard.  But the more I wanted to write, the less I knew what to say.  It's been somewhat overwhelming.  Emotions can come in handy, but not the emotions I was feeling.  

In the last few weeks, I've started so many posts in my head.  When I've found time to sit down, I've been able to start writing some of those posts.  But I end up either deleting everything I just wrote, or I get up and walk away from the computer.  

I knew I needed to step away from the media's orchestrated vaccine debate and did so for a few days.  It helped.  I felt refreshed and ready to catch up on some things that I'd missed.  I was sad to discover that instead of dying down, vaccine news was even more heated. 

Before I took a break, people from across all walks of life were chiming in about vaccines.  Even more were doing that when I logged back in.  I'm all for a debate and for sharing information, but the heated arguments and the insensitive insults being lobbed at parents like me was disconcerting.  

Those who do not have a vaccine injured child may not fully comprehend why some of us are asking the public to be cautious about vaccines.  We want them to learn about vaccines.  Study them.  Ask questions about them.  Understand everything you need to know about them.  Everything.  Including that they don't always come with benefits.


After going through several emotions watching the news recently, I thought I'd share a post that I wrote two years ago.  Maybe it will shed some light on why I encourage others to educate themselves fully on vaccines.  Vaccines come with risks, with side effects, and for some, regret.  

xo, Cat


The Role Vaccine Side Effects Have on the Caregiver

Side effects and vaccines.  That was the topic of last week’s Sunday post.  It was more of an introductory post, really.  Much more information can and should be shared regarding vaccine side effects.  As necessary it is to expand on that information, today’s post isn’t going to be a continuation of the medical side effects that I’d touched on last week.  So, I won’t be listing every single vaccine on the market.  

I won’t post every single side effect of each of those vaccines starting with the mild to the moderate and then the severe.  

I won’t prove how utterly dangerous vaccines and their side effects can be.  

I also won’t share that $247 billion* has been awarded by the US government to those who’ve  experienced a vaccine injury or death.  

I won’t mention that from swelling at the sight of inject, to being diagnosed with autism, to dying as the result of a vaccination, side effects and adverse reactions demonstrate that vaccines truly are unavoidably unsafe.  

Nope.  I’ll save all that for another day.  

Instead, today’s post is going to focus on someone else: you.  

So, let’s begin.

You, who after witnessing vaccine side effects firsthand in a loved one, have been more than willing to tell others that some vaccines aren’t worth it.  Their physical pain and your emotional involvement is a lot to endure.  As the vaccine injured learns to live with their side effects and their altered life plans, so have you.  Side effects bog down.  They deny advancement.  They steal hope and destroy healing.  

But those side effects won’t be found on a package insert.  

They aren’t included in the fine print of a slick magazine advertisement.  

They also don’t need to be disclosed or legally reported by the doctor, nurse or medical technician either.  

Similar in ranking, the side effects that afflict a caregiver can be mild, moderate and severe.  They can be painful, and they most certainly can last over a great deal of time.  

Now, in sharing the side effects that a caregiver goes through is in no way meant to detract from the serious physical nature of the vaccine injury.  But, I think it’s important to talk about the caregiver’s as well because those side effects do exist.  Because side effects can cause delay.  

Because they can affect someone physically, emotionally, financially while reducing their abilities.  And, like the actual vaccine side effect, the caregiver’s life can change, and does change, life forever.  I know this because I am caregiver to a child with a severe vaccine injury.  

Ronan’s side effects from his vaccines have lasted for years.  For the most part, I feel like I have a handle on what those are and how to best manage them.  But for my own?  The side effects affect how I live and how I care for Ronan.  

Take Ronan’s seizures, for instance.  They’ve increased steadily over the last few months.  As each seizure happened I began what felt like a post-traumatic stressful roller coaster ride of emotion.  Knowing how seizures affect Ronan and how desperately I wish he didn’t have them, I went from spurts of sadness to feeling waves of depression.  

For weeks I could not shake the extra negativity and the worry I had for my child, his situation and his future.  Weeks previously, when things were going well, I had less worry and more of a can-do spirit.  Triggers, like Ronan’s seizures, bring stresses to the surface.  The more triggers I face, the less effective of a caregiver I feel I become.  

I think many mothers go through these emotions, but having to juggle the additional medical and  behavior issues, as well as my own unpredictable emotions, adds a great burden to an already heavy load.  It’s no wonder that when Ronan’s health declines, when school days are tough, when negative behaviors pepper our once successful schedule, the more visible my caregiver side effects are.  

Mild side effects, which can include emotions and also lead to certain behaviors, can be: 

Sadness

Worry

Fear

Grief

Exhaustion

Anger

Moderate side effects a caregiver may experience:

Anxiety

Depression

Sleep disturbances

Insomnia

Physical toll on one’s health

Emotional trauma 

In no particular order, and with no limit to severity or duration, the caregiver’s side effects can have one feeling numb to escalating to a fit of rage.  Each situation is handled differently by each caregiver.  What affects one may not affect another.  What can be consistent, though, is that just as the vaccine injured are ignored, forgotten and pushed aside, so will the emotions and needs of the caregiver.  He or she will quickly take second place behind the vaccine injured person’s needs.  That may not be a bad thing as the caregiver gives selflessly while constantly focusing on the vaccine injured, but not having an outlet to express or work through the heavy burden of caring for another’s health can come with a price.  

Because of the type of care required for the vaccine injured—be it round-the-clock healthcare or one-on-one supervision, oftentimes the side effects a caregiver feelings and needs might go undetected.  Eventually, though, if they’ve built up, a disaster may be looming.  If the caregiver’s physical and mental health are affected, things can take a turn for the worse, not just for the caregiver, but also for that of the person they are tending to.  

Severe emotional side effects might include:

Apathy

Neglect

Mental anguish

Violent tendencies

Murder

Suicide

It would be easier to do what needs to be done for the vaccine injured individual without emotions, without the side effects, without the trauma and without the reminders of why things are the way they are.  But emotions are part of life.  

I go through several emotions myself depending on the situation I am facing.  If I have a relapse, like what happened when Ronan’s seizures surfaced again and could not be controlled, I’m brought back to the early days.  To the days when nothing made sense.  To when no one I talked to could help.  To when nothing was working.  
Those moments of anguish bring me down to a low that can be very difficult to handle.  But, after I fall into that despair, and as I work my way out of the hole of helplessness, I benefit from the other kind of caregiver side effects, the kind that will save my mental and emotional health and will help me refocus on Ronan and his needs.

Unlike the vaccine side effects, the caregiver’s side effects pose a positive side: 

-the desire to want to be further educated

-the discovery of talents never before realized

-the ability to advocate effectively

-the networking with others to create useful programs and products that will help the vaccine injured

-the craving to pay it forward 

It would be ideal if more positive came with a vaccine injury for both the vaccine injured and the caregiver, but that isn’t the case.  Finding the positive and building upon it requires works.  Work 
and pushing through the negative is possible, but it has its drawback.  For me, drawbacks come when I revisit how this all happened.  That happens when think about what Ronan’s lost and when I remember what I’ve had to endure, too.  I try to suppress some of negative that comes with pushing through those memories, but suppressing glaring reminders of how quickly life changed has me cycling through a range of emotions instead of leaving one or two behind.

If Ronan’s vaccine injury never happened, would I be who I am today?  Would I ever experience profound moments of insight like I did when I was able to put two and two together about his health and his decline?  Would I be part of a movement demanding changes to what our government deems safe and effective?  Would I have learned a fraction of what I now know? 

Would I have made and kept lifelong friends that I now depend on like family?  I can only speculate what sort of life I’d be living if none of this happened.  

Moving forward with what I have, with whom I’ve become, with those who’ve helped me get to this point in life is what I should focus on because I can’t rewind to Ronan’s baby days to when the needle plunged his chubby thighs.  I can’t take away what was given to him.  I can’t turn back time to when I was ignorant.  I can’t ask for a redo and research things that I never knew to look up on my own.  I would love nothing more than to do that.  I would love nothing more than to have the strength to help my child heal 100% also.  But I have limitations that prevent that.

Despite those limitations, I will always be Ronan’s Mom.  I am here for him.  I celebrate when 
he celebrates.  I make progress when he makes progress.  I hurt when he hurts.  I cry when he cries.  Parts of me dies when he struggles, when he deteriorates and when he fails.  My abilities and his inabilities are woven together as are his emotions and mine.  It makes us stronger one moment and undeniably weak the next, but no matter what emotion, side effect or situation we are facing, I’m here for him.  Always.



*As of 2 Feb 2015, the current payout for compensation is $3,090,780,181.43

The Role Vaccine Side Effects Have on the Caregiver was originally posted on Age of Autism in December 2013.  


Tuesday, February 17, 2015

Wandering Through a Winter Wonderland


The east coast was walloped by another snow storm.  A few inches here, a whole bunch more over there.  With dropping temps and white stuff on the ground, we’ll be hunkering down for a few. 

Preparing for the storm was easy:

Get extra batteries. 
Make sure flashlight work. 
Stock up on gluten-free snacks. 
Charge Ronan’s iPad. 
Charge the walkie talkies. 
Get the laundry done. 
Keep Ronan bundled up.  

If we ever lose power, as we have during post storms, we need to make sure Ronan doesn’t get too cold too quickly.  Ronan can’t moderate his temperature.  He can’t tell us if he is too hot or too cold, so we monitor that for him.  Something else we monitor is Ronan’s wandering. 

Ronan hasn’t wandered in quite some time, but the potential is there.  We’re fortunate to have access to a tracking system that can aide us should Ronan slip away undetected.  But, last week, after getting the battery in his tracking bracelet changed, Ronan did not want to wear the bracelet.  He tried to take it off for two days.  It’s not tight at all, but it started to bother Ronan to the point of him obsessing over it.  After several attempts to remove the bracelet by himself, I cut the strap.  I had to.  Ronan had started to rub the skin on his wrist raw. 

When it was off, I immediately put the device into Ronan’s pants pocket.  The pocket had a Velcro strap that I was praying would keep the pocket closed.  It isn’t the best place for the device, but it’s a quick fix until we can put the bracelet back on. 

Keeping Ronan safe is always a priority, but it’s an even higher priority now.  If Ronan gets out, he’s likely to get very hurt.  The cold, the snow, the ice.  It can all be very dangerous for him.  I can’t help but think about what if wandering moments because we’ve lived them—in both very warm weather and in in very cold weather.  Knowing how quickly Ronan can wander, I’ve been dressing him in bright colors.  I dress him in layers and sometimes putting a hat on...just in case. 

I’ve also been dressing Ronan in pants with pockets.  Once he’s dressed for the day, I can slip the device into one of those pockets.  It’s a temporary fix until Ronan’s sensory issues decrease and until we can work out a more permanent solution to putting the bracelet safely back on him. 

As Ronan’s siblings enjoy a snow day, the kids have been reminded to keep the doors that lead to a winter wonderland locked.  The few times they’ve gone out to play, I check, double check and triple check the doors to make sure that they are secure.  

Every time I walk past one of our doors, I make sure that they are locked.

Every time I walk past the walkie talkies, I make sure that they are charged. 

Every time I peek at Ronan, I say a quick prayer.

Every time I peek outside, I get a little shiver. 

I don’t shiver because it’s cold.  I don’t shiver because the landscape has freshly covered snow.  I shiver because as the mom of a child who wanders, past wanderings have happened on days just like today.  When the temperature has dipped.  When snow was in the air.  When ice was on the ground.  When a curious child couldn’t help but satisfy his curiosity.  And when that child took one step outside, in the cold, on the ice, and in the snow, despite the cold, the ice, and the snow, and kept on going…

That is why I shiver today. 

And that is why I pray. 

Angel of God, my guardian dear, please keep Ronan safe and near…

xo, Cat

--

For more information about autism and wandering, please visit these sites.  Please also consider supporting the National Autism Association's efforts to educate families on how to reduce and how to prevent wandering incidents:

  


Thursday, February 12, 2015

In Search Of

Knowing that a new hire comes with a good referral eases my mind.  That referral usually comes after I've asked friends, therapists, neighbors, coaches and my church community if they know someone who's looking for work.  

The job?  Working with Ronan.  

Where?  In our home. 

Why?  Because he requires one-on-one support.

When?  Now until...

We haven't always been able to hire someone that a friend has recommended though.  When that happens, if we don't find someone after reaching out as far as our circle of friends and professionals go, I brainstorm ideas of where else I can look for qualified individuals who can meet Ronan's needs.  
One place a lot of families will use to find in-home help is online.  Since we have had more bad luck than praise reports using online classified ads and when using services that match sitters/nannies/special needs attendants with families, I knew that I wasn't going to go those routes to find a new hire in my latest search.  

We lost a worker a few months ago.  I have been actively trying to fill the position since then.  After asking everyone we knew for some leads, I was not able to find anyone through word of mouth efforts.  I knew that I was going to have to look beyond my comfort zone to find a provider.  

While looking through some ads placed by other parents in similar positions, I read that people were having some luck working with their local community colleges and universities.  I discovered that some schools offer to place their students in both paid and unpaid internships.  I thought that was a really good idea.  If I could hire a student who was training to be in the field and who could earn hands-on experience with our family, I would request to be paired up with someone from the education, nursing or psychology departments.  We have not utilized an intern yet, but I would be open to that if we found the right match for Ronan.  

Recently, a friend shared that she was looking for in-home help for her son as well.  Our boys are both non-verbal and require one-on-one assistance and supervision.  We were both going to have to hire complete strangers because she, too, could not find anyone within her circle of friends.  

Talking about finding someone trustworthy who possesses the skills that our children require was a little nerve wracking for both of us.  I wrote those skills down after we chatted because I wanted to remember them when I sat down to write a job description.  My next step to find a new hire was to post the job description in town.  

I thought I'd share the job description here in case anyone else could use the information.  Feel free to cut/past, add/delete, and make the wording unique to your family's specific needs.  

Job Description:  Part-time in-home respite care

Job Requirements:  Candidate must be at least 18 years old, have a high school degree or equivalent, have a valid driver's license, have a clean record (background check required), provide professional references, and provide their own transportation. 

Must also have excellent communication skills, be willing to learn, be able to adapt according to client’s/family’s needs as well as be able to perform the following:

Arrive on time ready to work

Observe and train with parents to learn client’s specific needs

Hold special needs care experience and/or special education training

Assist with feeding and diapering needs

Bathe, groom, dress and attend to client’s personal hygiene

Assist, monitor or prompt client with encouragement and respect

Redirect, monitor and observe noted care plans and changes to care plan as specified by parents

Redirect client to reduce potential negative behavior(s)

Monitor activity level, behavior outcomes and seizure activity as needed

Be flexible with family’s schedule as well as with client’s needs

Maintain client and family’s privacy

Knowledge of basic sign language a plus

--

During the interview process, the candidate and I will go over each of those points above.  I'll also add a few things that have come up with past employees.  I'll explain to the candidates that wearing perfume or cologne can cause an increase in Ronan's sensory issues, that Ronan's providers cannot be distracted by their cell phones, that taking pictures of Ronan is not permitted, that our family conversations are private and information is not to be shared with others including on social media, that if we're sick we'll give them as much notice as possible that plans need to be changed, and that we expect the same notice in return.  

Some of those items sound simple enough and may not need to be mentioned, but I'd rather be upfront early with expectations than find us in an uncomfortable situation like we have had in the past when a provider had to be let go for unprofessional behavior.  

--

We have been blessed with some wonderful helpers in the past.  They  remind me constantly that there are good people in the world.  We need good people working with kids like Ronan and like my friend's son.  
I'm happy to share that after months and months of searching, we'll be welcoming a good person into our home again.  Paperwork is being completed, and a start date is just around the corner.  I wish the same happens soon for my friend and for other families who may still be searching for the right person for their children.  

xo, Cat






Tuesday, February 10, 2015

Stop the Seizures

We had a good relationships with one of the doctors who treated Ronan. I always appreciated this particular doctor because he saw Ronan first as a human and then he saw all the complications that Ronan had. The complications were plenty, but Ronan needed to be treated with compassion as much as he needed appropriate medical attention. This doctor provided both of those needs.

One year, when Ronan's seizures were increasing, we immediately booked an appointment with Dr. W.  As much as I loathed another appointment, I knew it was important for Ronan to be seen as soon as possible.  On the day of the appointment, Dr. W. and I sat down and together tried to make sense of what was going on. Brainstorming, recalling specific events, reporting changes – even minor ones, factoring in a recent growth spurt, we went over everything we could think of.  We also went over the fifteen minutes we were allotted for the appointment. Other people might have fussed at that, but it didn’t matter to Dr. W.  He recognized that there was a problem, and he knew it would take time to find a solution.  Besides his professional knowledge, recognizing that some appointments would take longer than others was another thing that I appreciated—we were never rushed into or out of our appointments. 

After updating Ronan's medical history but not being able to pinpoint a drastic event or change that would lead to an increase in seizures, we talked about next steps. It didn’t feel like there were any to take, but we had to do something to reduce the seizures.  Despite the little changes since Ronan’s last appointment, one of the steps we discussed was to increase the dosage of Ronan's medication.  I was hesitant, but after being reassured that we’d see benefits, I agreed to a new dosage trial.  I told Dr. W that I had just filled a prescription, so we didn’t need to order a new bottle. I’d just up the dose with what we had and when that bottle was almost empty, Dr. W said he would fax a new prescription to the pharmacy for us. 

We knew it could take a few days for the new dosage to work, so we looked at the calendar and circled a date when we thought we would see seizures decrease and hopefully stop. A week went by.  We expected some seizures to continue to break through, and they did.  I was not expecting them to continue the following week though, but they continue.  Halfway through the second week as they gained intensity and duration, I placed a call to Dr. W’s office.  Dr. W was as confused as we were and asked me to call him in 48 hours if this pattern continued. 

Before increasing the new dosage, the seizures Ronan was having were not very long, but they were enough of them to warrant concern.  After increasing the dose, the seizures were getting longer.  I made another call to the doctor’s office.  Dr. W was with a patient, so the nurse took a message for me.  To make sure Dr. W got all of the necessary information, she asked me several questions.  I thought the last one odd since I had never had to offer the information before, but in retrospect, I am grateful that she thought to ask it: 

“Mrs. Jameson, can you please read to me the label on Ronan’s medication?”

Quizzically, I asked, “The entire label?”

“Yes, Mrs. Jameson.  Please, go ahead,” the nurse requested.

“Okay, it’s prescribed to Ronan Jameson…” I began. 

I gave the nurse his birthdate, the prescription fill date, who prescribed it, the name of the pharmacy, and the dosage and the name of the medica—

Wait a minute.  Something wasn’t right.  The label stated that the medication was the generic version, not the name brand.  That can’t be, I thought to myself.  We always get the name brand. 

I put the bottle down and thought back to when it was filled.  I looked at the date on the bottle and at our calendar.  I thought back to when the seizures began to increase.  Oh no!  Could something as simple as the generic form of a medicine be causing the increase in seizures? 

Yes. 

I was floored.  Then I was angry.  We had requested the name brand, but got the cheaper medication.  The nurse interrupted my frantic thoughts, “Mrs. Jameson?  Mrs. Jameson, is everything okay?”

I told her that no, everything was not okay.  I mentioned that we never got the generic version and when I thought the switch to that version had happened.  I asked her to please ask Dr. W that change could be what is causing the seizures to break through.

The nurse added that to the note and thanked me for the information.  I asked her to rush the message to Dr. W. 

Dr. W called me back and confirmed that for some kids, especially sensitive kids and complicated kids like Ronan, generic meds can cause problems.  Together, we were able to trace back to when the switch from name brand to generic happened.  It was around the same time that Ronan’s seizure activity increased.

Once we figured out how and when and why the seizures were happening, I felt relieved.  Dr. W agreed that from now on, Ronan’s prescriptions needed to always state “name brand medically necessary”.  To make sure that our pharmacist would be made aware of that, Dr. W promised to call him for us. 

Whew.  Problem solved. 

Until the insurance company stepped in.

Since we had recently filled the medication, we had to jump through hoops to get another new bottle filled—this time with the updated dosage and with the “name brand medically necessary” request.  I thought it would be easy and that Dr. W would just have to override the old request with the new one.  

Easy? 

It was far from easy.  It was hard, and it was cruel.  

The insurance company sent us a message that generic offered the same benefits of the name brand, and had the same qualities of the name brand, and was just as good as name brand if not better!  Um, no.  I told them generic was worse, that it brought on seizures, and that it caused more stress and loads of heartache.  I told them that we didn’t report as many seizures to our doctor while Ronan was on the name brand medication and that our doctor didn’t authorize a generic script.  While trying to resolve this, I placed more phone calls, felt more stress, and watched Ronan have more seizures.  Insurance wouldn’t budge.  Ronan had to use up the supply of the generic before they’d agree to fill the new brand name necessary script.  Not only that, they insisted we continue use of the generic script for at least one full month to really, really, really prove that the seizures were still happening before they’d consider paying for the name brand prescription.

Ronan had to have seizures.  For one full month.  To earn the right to use a safer medication. 

I was absolutely livid. 

Dr. W was upset too.  We both thought, wasn’t one seizure enough? 

Apparently not.  It would take a full month of seizures for my son to suffer to get the proper care he required. 

Once we were allowed to make the switch to the name brand, Ronan’s seizures subsided.  We finally let out a big sigh of relief.  We also have since switched to a different insurance company. 

Sadly, Ronan has had a flurry of seizure activity in recent months.  Medication has not kept seizures at bay.  And with every ‘up the dose’ we try, seizures still break through. 
#hope4autism
#stoptheseizures
#cannabisismedicine
I’m still learning all that I can about seizure management.  It can be a very tricky process—some patients respond quickly while others face medication trials, complications, and unfortunate failures.  Something that I’m keeping an eye on, and fully support is cannabis research and treatment efforts.  I am reading positive reports and appreciate that people are making their findings public.  I don’t feel knowledgeable enough on the subject yet to share more than just a hope – I hope that medical marijuana will one day be made available to all who would benefit from it.  I know several children who could be prime candidates for this type of treatment…my son included. 


xo, Cat



The photo above was printed and sent to The First Lady.  To read about the postcard campaign that began February 8th, please visit the #stoptheseizures Michelle Obama Postcard Campaign.