Thursday, March 8, 2018


Hi Patients, Families and Friends - 

Just a quick note to share that there are TWO exciting research opportunities through Nemours.  You do NOT need to be a patient or live in the area because these are both fun ONLINE opportunities.  Read more below for qualifying details and please, feel free to SHARE this post to help us fill up their research study so we can improve T1D care for all!!!

Research is the magic medicine of helping to improve care while also feeling EMPOWERED by sharing and bettering our T1D community.  I attest much of the positivism within our family to rolling up our sleeves and giving back in ways that create tangible change and better outcomes for everyone living with T1D.  

If there is just one thing you do, try participating in research - you won't regret it and the payback will be worth every second.  

Best wishes and thank you!

Naturally Sweet Sisters

Research Study #1  Click HERE for details or type in your browser

Research Study #2 Click HERE to learn more or type in your browser

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Tuesday, February 27, 2018

Treatment Number 2

Last night, our youngest completed treatment number 2 towards her Chronic Urticaria.  Overall, it seemed to be a smoother process.  She knew what to expect in terms of the injections and because of that, her pain tolerance was higher.  There was still discussion about the Xolair feeling 'thick' and 'Gooey', however, once done, she moved into the recovery room without any grumbles.

And now we wait.

This is what is hard.  I so badly want to test her reaction and see if there is an improved tolerance to the sun.  Yet, from our much hyped first visit, when we did that, nothing changed.  She still had hives the second the sun touched her arms and face.  It was a bit defeating and definitely disappointing.

So we wait.  And see if there is improvement as it naturally may occur. 

Thank you for the continued well wishes, support and prayers.  We are hopeful, always. 

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!