Tuesday, January 23, 2018

January came and then, it left.. but did it take the Solar Urticaria with it?

Urticaria is real.  

Finding treatment is hard.  

For months, I have been struggling to get our youngest daughter help.  First, I had to find out what was causing the hives.  Since she is allergic to the sun, it was fairly easy to deduce that every single UV ray encounter was causing an allergic reaction on her exposed skin.

Then, I had to record it.  How do you show a doctor what it is when you are sitting in a semi-dark, windowless patient room?

And of course, I had to find the right doctor which turned out to be a pediatric specialist that understood solar urticaria and could prescribe relief.

However, with all of the wonderful modern medicines available, we were forced to try combinations of multiple and various pills.  The effects were lethargy, drowsiness, irritability, and oh my favorite... DID NOT WORK.

Not one.  Not some.  Not ALL.  Nothing worked.

In the meantime, I have spent months researching, talking and finally begging to try something that is working for many patients.  Xolair. 

Xolair is an injection that is FDA approved for asthma patients.  However, when those asthma patients suffered from urticaria, the injections were shown to effectively treat and put hive outbreaks into remission.  

Thanks to a beautiful soul that reads Naturally Sweet Sisters, she reached out and shared the story of her son and how Xolair treated his urticaria almost immediately.  After hearing that, I was beyond excited but to get to our ability to try it, we first had to build a health history of the ineffectiveness of meds.  

Why?  Because they are cheap and insurance has a better likelihood of approving higher tier, off label drugs only when there is a documented history of ineffectiveness.

For patients like my daughter, this provides a low class of life.  She has been inhibited in everything that she enjoys doing. Being anywhere near the sun can and does cause a reaction. For example, she routinely has hives from the sun shining in the car on the way to and from school. Walking around the neighborhood, even in the winter, cause bright welts to appear on her cheeks - which are the only exposed part of her entire body.  She is often teased at school and has had to switch seats to less sunnier ones.  One day, during sub zero temps, I caught a sunray in our front window.  Opening my eyes, I could see her longing to soak up the warmth but couldn't bare the reaction of bubbled, red and burning, then itching marks.  She instead, turned and walked away.  Once she was gone, I closed the shades because it simply isn't fair for her.

A few weeks ago, I scheduled yet another follow-up and determined for better, I marched into the appointment like a mama bear.  And thankfully, sparing me the need to further demonstrate our requirement for better treatments, the provider instead talked to our youngest daughter about how she felt.  Listening to her, I started to cry and that promptly embarrassed our youngest and also, promptly started the route to approval for Xolair.  

We were required to order epi pens and to agree to each $3,000 shot out of pocket cost, but only if insurance did not cover or if we were unable to make the appointment.  

The protocol is two shots per session. It will require a 30 minute window for mixing (not that it should take that long, but it gives the nurses time to prep and fit us in) and then, once the shot is injected, we are required to stay in-patient until it is determined that there are no asthmatic or allergic/reactions or symptoms.   

Today, she was finally approved through a pre-authorization from our provider to insurance and will be covered at 100%.  

We aren't sure how many sessions will be needed but as I spoke to the nurse today, she was delighted to share that some children experience relief even in one to two days.  

1 or 2 days?  

Why would we have such a messed up system that has caused my child to struggle for almost a year?  This is why we need better.  

I'll keep you posted on the first shot next week.  Stay tuned and wish us luck!  






Wednesday, December 20, 2017

Counting Down Until Christmas



Today is the last day of school for 2017.  In a matter of hours, my house will resume a family energy.  While mornings will be excessively quiet due to the need to sleep-in, the rest of the day will be full of kids bustling in and out, demands for food and snacks and certainly any intent of a clean home will be long gone. I wouldn't trade it for anything!  It's a special time of year and I hope to keep this tradition for years yet to come.

It is also a good time to take stock in what we are doing within the T1D realm.  Having the girls home, even for short bursts during the day, allows me to see how care is really going.  I can take a few moments to download insulin pumps and CGMs and I can make changes more easily to their daily insulin:carb ratios.  It's a lot easier to do this during break week than when they are at school, work or extracurricular activities.

To help streamline our to-do list, I created a simple list of activities for all of us, including other families, to do at home:

1.)  Reorder supplies.  
This is the end of the year and for many, the out-of-pocket and deductibles have been met.  From now through December 31st, you can take advantage of ordering DME and pharmacy supplies and for most, this is at no additional cost!

2.)  Spend the last of your FSA.  
Have money hanging around?  Many plans allow over-the-counter pharmacy items to be reimbursed.  Check with your employer to see if your plan qualifies to save money on things like alcohol wipes, band aids, contact lens solution, Tylenol, ketone strips and more.

3.)  Review the emergency bag.
Everyone should have an emergency diabetes bag that is ready for instances such as natural disasters or on a positive note, impromptu vacations.  This is a great time to check on the bag and toss expired, out-of-date, or to replace items that no longer are used.  After the bag check is complete, take a moment to remind your family on where and why the bag is available.  It's a great time to review a fire safety plan too. 

4.)  Give a second look at the 504 plan. 
Anyone with school aged children should know that the 504 is a living, breathing document.  It is not a one time make it and forget it.  In fact, December is a great month to review what worked well, what needs improving and what can be added.  Schedule your school meeting for January and start the second half of the year implementing your strategies.  It's a win-win for all, especially your student.

5.) De-stress. 
This is the time of the year where there are many other events, parties and other demands.  As a mom of two with T1D, I urge all of us to practice compassion and kindness to ourselves.  Say no to anything that is not mandatory.  Use your time to spend it with the people that you love the most.  Savor and reflect on far you have come in your T1D journey and most of all, celebrate those victories - big and small! 


Happy holidays from all of us at NaturallySweetSisters.com!  







Thursday, December 14, 2017

We need your EXPERTISE!!! Please JOIN US in Helping to Improve Our T1D Community




STILL TIME TO ENROLL!!!!!!!  SIGN UP TODAY!!!!!!


Click this link to enroll!!!   http://bit.ly/TCT1D



Sometimes, you may wonder if there is a way to help others, to make small improvements that lead to better changes.  As you may know, this is what I consider to be one of the key 'silver linings' within T1D... when we are able to use our personal knowledge and expertise within the T1D community, we then receive the satisfaction of knowing that we aren't just waiting, but that we are actively working together to change the face of T1D.  

Today, we have the perfect opportunity for families with children ages 11 to 16 years old  (AND PARENTS TOO!!!) around the country.

Teens and Parents will also earn $ for answering questions about T1D within a set period.  

This is an excellent opportunity to share that T1D knowledge is VALUABLE!  


⏩⏩⏩⏩    HELP US DESIGN A NEW APPROACH TO CLINIC VISITS    ⏪⏪⏪⏪



WHAT CAN I DO TO HELP? 

Many adolescents struggle with managing type 1 diabetes (T1D) and about 75% of them have A1Cs greater than target recommendations. This often goes hand in hand with coping difficulties, lower quality of life and high risk of complications. Psychosocial factors are major influences on T1D outcomes, but regular T1D care often does not address these issues. In this 3-year, NIH-funded study, Dr. Tim Wysocki will coordinate the development and testing of a Transdisciplinary Care (TC) model in which T1D is co-managed by an Advanced Practice Nurse, Dietitian, and Psychologist who will see adolescents together. The project will use “crowdsourcing” to obtain input from separate crowds of teens with T1D, parents, and healthcare providers to gradually develop this new model of healthcare delivery. Once the TC model has been developed and team members are trained, the team will complete a randomized controlled trial to evaluate effects of the TC model on health and psychosocial outcomes. We are currently recruiting for the TC Model Development Phase. 

WHO CAN HELP? 

If you are a teen with T1D between ages 11 and 16 or a parent (or legal caregiver)of one, follow this link to learn more: http://bit.ly/TCT1D


WHERE DO I SIGN UP OR GO TO LEARN MORE?

Click HERE!