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Coordinated Care

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By Cathy Jameson

A new care coordinator was assigned to Ronan a few weeks ago.  Wanting to meet us so she could explain her role and how her company can assist families like ours, I really wasn’t looking forward to meeting her.  She’s straight out of mainstream medicine, an area of medicine that doesn’t usually go out of their way for moms like me.  Moms like me question, doubt, fear, and don’t appreciate everything being offered.  What they say is preventative really isn’t.  What mainstream med says is safe and effective really hasn’t been.  What they say is mandatory really shouldn’t be.  Feeling apprehensive, but knowing that this meet up was an inevitability because of the type of program Ronan was in, I made plans for us to get together on Monday of last week.  

During the meeting, I believe that I gave her enough information to satisfy her questions.  Ronan has this diagnosis and that diagnosis.  He uses this equipment and is on that prescription.  We see this doctor, that doctor and those therapists over there.  He requires this amount of assistance and that amount of support.  Getting more personal, I was able to share that oh, yes, he is well taken care of and well loved.  He enjoys watching movies, playing Wii, and oh...no, he did not get this year’s flu shot or that pneumonia vaccine...but thanks for asking!  

Waiting for the next round of questions, I watched the young nurse fill out Ronan’s forms.  Checking this box, crossing out that wording, circling this option and x-ing out that answer, she remained silent.  I did, too.  She didn’t get to know everything.  Part of being the kind of mom mainstream medicine tends to loathe,  I’ve learned when to speak.  I’ve also learned when to shut up and just listen.  I don’t always like to do that, but it’s part of what moms like me have had to do.    

An hour had passed.  The last part of the meeting with the care coordinator was talking about and making goals.  Goals?  Medical goals?  In all the years Ronan’s been seen, evaluated, and treated, no medical person has ever asked me about making medical goals for Ronan.  Even so, I blurted out two as quickly as she’d asked:   

#1 To make the seizures stop

#2 To restore Ronan’s speech

Without making a comment, or showing any emotion, she wrote down what I had said.  Then, I waited.  I waited for some advice.  

But, I got none in reply.  

I’d hoped she could at least answer some questions, ones that I sometimes ask myself daily - What more can we do? We’ve done everything.  What else could we try? We’ve tried everything.  Who else should we see?  That we can trust.  What else should we ask?  That hasn’t been asked already.  The goal section on the form wasn’t that detailed though.  It was much simpler.  Write a couple of goal.  Hope they happen!  If only making the seizures stop and the language begin to flow again was that easy.  

We wrapped up the visit and promised to keep in touch.  Then Tuesday happened.  

Tuesday, while I was driving the high school carpool kids, Ronan had a seizure.  Then, he had more.  With big sister sitting next to him in the back seat, she knew to count them.  “Mom, he’s had 2.  Now three more.  Mom... more.  Mom!”

Ronan didn’t want to get up that morning.  Waking him from a dead sleep, he couldn’t tell me anything verbally so he signed, “No, no, no, all done, no,” as I tried to get him up and into the car.  Once buckled, he sat and rubbed the back of his head on the seatbelt all the way to the carpool pick up point.  He continued to rub it as we headed down the road with a carfull of teenagers.  

When the seizures started, I was more sad than worried.  Poor kid.  Will he ever catch a break?  

One seizure is not unusual.  Clusters of 3 or 4 are not uncommon as well.  But these were different.  Fiona knew it.  As I stole glances of her and Ronan while keeping my eyes on the road, I knew it, too.  For these kinds of there-and-back sort of drives, I don’t bring Ronan’s backpack--it has a change of clothes, a favorite book, and a stash of his emergency medication.  I regretted not having it the instant I looked in the mirror.  Ronan’s back arched, and he began to have a grand mal seizure.  

“Fiona, honey.  You’re doing great.  Watch his head, okay?” I said to my daughter as calmly as I could.  We could pull over in less than a quarter of a mile.  If I could just get us off the road, I could try to help her.  “Hang on, kiddo.”  But what do I do?  What do I do??

The last time Ronan had a seizure this big, he was in the hospital.  His doctor was right there.  She got him stable, but now?  It was me and 5 teenagers in a car with none of capable of stopping a grand mal.  Think!  Emergency meds.  He needs his emergency meds!  Oh, my gosh, they’re back at home.  But, wait.  Maybe I had one dose in the car.  Yes!  I knew I had put one in the car months and months ago.  It was now just a matter of pulling over and finding it.  

Mere seconds had past, but it felt like hours.  Ronan was still seizing, so I continued, “Hey, kids? I have to pull over.  Ronan’s having some seizures.  He usually doesn’t have this many, but I need to check him.”  They understood and when I had to unzip Ronan’s pajamas, pull off his diaper, and insert the suppository medication in, they remained quiet, calm, and incredibly respectful.  

Within seconds, the seizures stopped.  It felt like a lifetime, but in a few short minutes he was stable.  I, on the other hand, was crying on the inside.  A grand mal!  Why?  Damn it!  We’ve never had to deal with these.  I hope to never again.  

Dropping the crew off to the school, and only five minutes later than usual, I tilted the rearview mirror down so I could watch Ronan unobstructed as we drove home.  Looking so tired but so beautiful, I couldn’t help but think about that goal I’d made for us less than 24 hours before - to make the seizures stop.  I laughed.  Then I cried.  When I got home, I cried again when I saw what Fiona had been looking up in between the smaller seizures.  Damn the damn seizures and what they’ve done to my kids!  


Ronan Seizure

Thankfully, Ronan bounced back.  He made it to his therapy appointments.  He learned how to spell some new words.  He laughed with his siblings, and with the encouragement of some of his brother’s classmates, Ronan went down the slide all by himself.  That happened the day after the big seizure.  Taking years for him to have the confidence to not just sit at the top of the slide but to go down it as well, Ronan finally slid down the slide.  He went down three more times.  The middle schoolers knew it was a big deal and cheered happy and hopeful cheers.  It was a moment I won’t soon forget.  

Life is full of ups and downs.  I cling to the moments that raise me up and work through the ones that have brought me down.  I do wish it was a tad easier sometimes.  With all the work it takes to care for and attend to every medical need Ronan has had, including that terrifying seizure in the car, it’s comforting to know that I can tap into new services reserved just for parents like me.  For the last two months, we’ve had major issues with filling Ronan’s medication.  Behind-the-scenes issues and loads of red tape cost us time and caused an increase in seizure activity in January.  I can’t help but wonder if those prescription issues contributed to the seizures we saw this month, too.  

Seizures are no picnic.  The grand mal Ronan had last week proved just that.  I tried in vain but have not been able to fix the medication problem on my own.  Ronan’s meds are due to be filled next week.  Our new care coordinator, who just met us and who barely knows us, says she can help.  This gal has made resolving Ronan’s medication blunders a first priority.  I pray she comes through with her promise.  I really, really do.  

Cathy Jameson is a Contributing Editor for Age of Autism.  

 

 

Comments

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Benedetta

Well, we all know about diet.
A low carb diet is the way to go.
2005, Cleveland clinic said that a modified Atkins diet of only 15 carbs a day could help a lot in controlling seizure outbreaks. It was better than the ketogenic diet because it was easier and not as strict. Cleveland Clinic even suggested that some one with epilepsy could consume up to 30 to 60 carbs a day if they were slow release carbs. I guess that is a bit harder to figure out which foods that would be, but it would have a lot of fiber bound up with the carbohydrate. Still it would be hard to know precisely.

Morag

Great article "Navigating through the difficult areas of coordinated care planning"
See Helen Sanderson Associates UK for further info with Person Centered Care Planning and Assessments . Fab info for overcoming the institutionalised constraints of "The torteous tick box questionaires restricted /limited by their design to open/closed,question/answers with professionals in the coordination team al lhaving different styles of assessment paperwork to use .
Sadly, but in reality, professional rivalry and jealousies still exist about who has the best assessment paperwork style .This is a huge barrier to person centered care planning from start to finish a big problem area still. Can result in tomes of paperwork for the next case conference contribution with a summary conclusion that could often easily be documented on the backside of a postage stamp ,stating "Promote independence"?! We did training with Helen Sanderson Associates in 2002 .Best care-plan set up we have ever worked with ,and very adaptable for different types of conditions and abilities as well . The initial set up in terms of staff time /wages over 1-3 days is the expensive bit but once the plan is done it's a quality plan that works !
See also Reverse goal planning . good for thrashing out difficult risk assessment areas of goal planning for care planning .

Cathy Jameson

I had drafted some responses yesterday morning when the comments started coming in, but our internet was wonky until late today.

Thank you all SO much for your thoughts, suggestions and prayers. I take each comment to heart and read up on every idea you all share. I'll start look at the links tonight as soon as the kids are tucked in :)
concernedmom, thank you in particular for the very well-thought out reply - even for a veteran mom like me, it's good to review where we are, what we're doing, and where we'd rather be. I do like that your ideas can help that newbie mom/dad who may be reading what we're all sharing, too, so thanks for that.

xo, Cat

Jeannette Bishop

May you find healing of Ronan's seizures soon!

I already posted this link in the top thread and I think maybe I should post it here also in case anyone reading this is in a situation where they may benefit from this product (note I cannot personally recommend it, as I haven't used it):

https://www.youtube.com/watch?v=yCMzooTvLZM

michael

Praying that the care coordinator will bring something to the table that will be tangible and give Ronan and your family a break from such god awful seizures. You, Ronan and your family stand tall in the face of such challenges.

Donna L.

So glad Fiona was right there to help, but so sorry for the trauma she had to endure.

My son once had a grand mal in the back seat of the car that pushed him up against the car door and dislocated his shoulder and fractured his arm.

Offit, Dorit R., Gorski, et al wouldn't last a single day caring for our kids.

Benedetta

Thanks Laura Hayes.

Jo

I saw a video on Youtube of a kid given a nasal spray of cannabis oil. It stopped the seizure in seconds.

Shelley Tzorfas

I totally agree with Concernedmom who suggested using Brand Name Prescriptions only. Some people think that generic drugs are there just to save money. I have read that one of the main reasons you get switched from Brand name to Generic is because the Brand Name drug can be sued, whereas the generic can not be sued.

Laura Hayes

Cathy,

I have heard that Amino Acid Quick Sorb by Biotics Research can stop a seizure in its tracks as it delivers critically-needed amino acids to the brain rapidly. It is available online for purchase, so I am posting the direct link for you below. I don’t have personal experience with this product, but wanted to share what I have heard about it from a practitioner.

Should you or anyone else try it for seizures, please share your experience!

Amino Acid Quick Sorb by Biotics Research

https://www.amazon.com/gp/aw/d/B01N9H1T6P/ref=mp_s_a_1_3_a_it?ie=UTF8&qid=1520182407&sr=8-3&keywords=amino+acid+quick+sorb&dpPl=1&dpID=41RC%2BHQzjwL&ref=plSrch

Benedetta

Partial complex will lead to tonic/clonic, that is true.
Myclonic jerks will also eventually lead to tonic/clonic too. The word Grand Mal may be the old term, but buddy it describes it perfectly, and for that very reason it will always be a well recognized word, forevermore.

Our problem was getting a diagnosis. I kid you not! from the time he went off his seizure medication as a four year old to the age of 17 years oll, were miserable years filled with complex partial, years of myclonic jerks finally lead to those grand mals.

Then years of trial and error medications. Some cause deep depression - deep depression I suspect is the reason a child has irritation and aggression too.
Then there are those that suck the calcium right out of their bodies, swell their gums. Then there are those that are great for the mood, but when they take it, it causes their necks to turn red and burn cause they are allergic to it. Avoid the Depokote like death, cause it is.

Really what is so bad about whooping cough for an older baby? I mean really, Antibiotics works on whooping cough doesn't it?

Sharon

Hi Cathy, I know you've probably tried everything possible for the seizures. The ketogenic diet was developed for epileptic seizures, it was the 'cure' before they had medication and it works really well. I have no idea if it would help you, I just wanted to throw the info out there.

concernedmom

Cathy,
-From someone who has been there...
-Make sure prescriptions for seizures are labeled by MD, "name brand only."
This avoids the generic problem (allowing up to approximately 20% difference in actual dose delivered with generics can make figuring out the problem harder).
-Complex partial seizures left untreated can ultimately lead to tonic/clonic or secondary generalized seizures over time. (no longer use grand mal). Secondary generalized seizures mean that the seizure likely started as complex and then very rapidly generalized. Imp to determine what kind of seizures and from where Ronan's are coming from as the treatments are different.
-Some people have thought that a seizure is almost like a "reset" button. We have experienced these as well. In looking back however, that seemed to happen more often when the seizures were less frequent, 1-2 per month. When they started compounding, life became very difficult. The behaviors post-ictally can be scary and lead to increased aggression over time.
-you might want to try nasal versed if you often have a carload of children. Does not work for everybody but saves time and staff may be more apt to deliver on time and appropriately.
-1:1 parapro at all times if having seizures, especially grand mal.
You probably know all this...for anyone else out there who may not.

susan welch

Thank you, Cathy, for posting this. You and your family are amazing. I do hope the new care coordinator can fix the medication problem.

The ignorance of the general public, when it comes to vaccine injury, is so much a part of the problem and the media is complicit in this ignorance.

Your updates are helping to get the message out there.

Vaccine Injury HURTS

Thoughts, Prayers, and SCREAMS that you and your family have to endure these terrifying episodes.

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