Dare to Think Differently

One blessing I think CVS and Mito have done for our family is that it has made us take brave steps in thinking differently that we otherwise would not have done. Yes we all can list the things we have not been able to do because of it. This is my challenge to myself and to you to make of list of the GOOD Things that have come from it. Here is one thing I am thankful for... I will do more in future posts.

Homeschooling.
Because my son cycles frequently and requires many hospitalizations, we made the last min decision to homeschool him this past Sep. Yes I always talked about homeschooling all the kids, but well I was just not that brave to actually do it....that is until CVS. We went to first grade open house excited and nervous. We pretreated at home and prayed for the best for the first day of school the next day. But of course we got the 4am puke wake up call and were in the ER by the time he should have been getting ready for his first day of first grade. This proved to be a 6 day hospital admission this time.

 As I thought and thought as we struggled to get the puking under control even in the hospital setting...I knew something had to give. Something had to be different, outside of the box, if not I feared I'd just be moving into Southern New Hampshire Medical center for the school year. See a helpful thing was this, I'm dyslexic, and by our very nature we are very adaptive, and innovative type people. But homeschooling could I really do it. Well honestly it could not possible worse than the track we were heading on if we stayed this course. I'd already graduated high school, college and graduate school, all things that seemed un obtainable when I was in first grade.

I always said I could teach anything but not how to read and that's proving to be true... but that's a whole other story. For now what I can do is inspire him to learn in a less pressure environment and teach him in the ways he learns best. I can teach just about anything with legos :) We read stories of history and then build them. We do math problems and solve them with legos. We create scenes and then write stories about them together. I think he has the same dyslexia I do, so we do everything orally until proven other wise and we get more supports in place for that.  I read to him classics like Ralph S Mouse, Trumpet of the Swan, Geronimo Stilton books, and many more. We have quite the list of books that we've done together.

And Yes I do count Minecarft buildings as assignments. He has a natural gift with spacial learning and art that would never have been fostered to the extent it has if he was in a traditional school setting.

He's finally gaining weight and is back up to a healthy BMI (body mass index). Hospital stays are still common but spaced out further apart from every 2 weeks lasting 3 days to 6 weeks lasting 24 hours. Those are huge gains for us. He's happier, he's calmer and has more time to focus on his strengths.
 
Is this all easy? No. It's challenging.i doubt myself all the time. I question our approach.... Could this really work? Of course it can, this is how kids learned for generations. Is it different than the majority? Yes....  Is it worth it? YES! 

I'm a realist by nature. I tend to focus on what is and see what we can change and what we have to live with or deal with that's out of our control. But this leads to a greater appreciation of simple things, simple joys, and everyday blessings.  I know we won't be able to do of many your status quo stuff..trips to Disneyworld, or traditional elemtary school for him. but who says you need to? Life is about finding Joy. So what if my joy is having a short episode and short hospital stay, and joy in his latest innovative story or design and yours might be a student who's on honor roll or playing on a sports team. Joy is joy no matter where you find it. Will things always be like this.....? God only knows... but for now this is what is....and I am going take a good hard look at what is... and find the good that can come of it. D

Different is different... not necessarily all bad...and other approaches to life are not failures....ITS ALL IN THE MATTER OF THE WAY YOU CHOOSE TO VIEW IT.

 Because of this..... We get to focus on a lot of this.....

Give and Take.... Reflections on treatment options for children with Cyclical Vomiting Syndrome

Everything is give and take.. take the bad to get the good.. and try to find the right balance... but what do you when you are no longer sure which is worse the side effects or the problem it is trying to solve.

When we started with CVS a simple dose of Zofran and IV fluids were helpful. Then we moved to needing to do Zofran Ativan and IV fluids combo. Then we added preventative meds round 1 ( too sedating and was still frequently getting sick) Then to preventative med round 2 ( which he then refused to eat anything while he was on it). Then you regroup and just go with strong abort plan for a few months til that becomes not enough again.....

Then you revisit med option 1 again (same outcome) and the same for previously tried 2nd option with same results. You read you research... you learn about supplements and can't wait to start but waiting for genetic dr to order correct dosages for you. Your ace in the hole which kept attack to 24 hours hospitalization instead of 3-4 day is now starting to cause problems with side effects as well.....SIGH......Here we go again...(update: our ace med is fine, complication is due to infection from injection and not med itself)

Making choices of what side effects you can live with and which you cannot, can be a very difficult choice. Your dr can highly recommend ones but ultimately it's our decision as parents to agree to them and to find a way to get the child to take it. Its important to be educated on options that are out there and to actively participate in the decision process.

This is the latest list of med plans available Treatment Recommendations .

Below are some reflection questions to consider when deciding which plan fits your childs needs best.
They might need only a abort or rescue plan of med take only when sick. They might require a daily preventive med plan. They may also need a ER plan or direct admit plan. Consider the following point when talking with your Dr about what proactive plan should be in place.

• How often does my child get sick (daily, weekly, monthly, every 6 weeks etc)
•  When my child is down, how long does that last? (hours, days, weeks or more)
•  When they are sick are they able to still do day to day things 
• can they read books to distract them?
• go to school?
• focus on watching tv?
• are they in the hospital needing sedation or IV fluids?
• Are they able to take bites of food or sips of water as needed 
• How long has this pattern been true?
• Does this pattern impact day to day life? Can they attend school or are they home schooled or home bound? How does the child feel about this? How do you feel about it?
• What would be a realistic goal to set at this time? (we all want no cycles but a reduction is victory enough for many)
• Can you ID triggers?
• If you can ID triggers, what changes can you make to try to avoid them? 
• Have you reached out to support groups to learn what other parents are doing?
• Can you try other supportive therapy such as OT, Cognitive Behavioral Therapy, Chiropractor, Dietary Changes, Exercise to better reduce triggers and promote overall health?
• Consider the emotional and physical toll it's taking on the child and rest of the family.

Read up on options and latest research by going to CVSAonline.org

Dr Li, Dr Richard Boles of UCLA are leading the way with treatment options! With also much gratitude to Dr Fleisher who is now retired....

Its not a one time process but an ongoing one... as our kids grow the challenges and needs change and so will the plan that we make to help them get through the cycles. For some the pain is managable and laying low for a week watching TV in between puking and able to take sips and avoid major dehydration.

Some dehydrate in as little as an hour no matter how much they drank the day before (that would be us). The plan that works today might not work a year from now.. what is helpful is documenting what works and when it does not documenting the specifics to that as well.

Even if you feel like you are back at square 1 with finding a new plan, remember how far you have come...how much you've learned and advocated for your child and keep up the good fight.
You felt so overwhelmed in the beginning.. and for a while you had some peace.. and it will return... Hold tight.

Stay calm and Puke on..... until we find a cure :)