Amber

I bought Ruby an amber teething necklace when she was 4 months old to as I had heard from a few friends how it help their kiddos with teething pains. 
Ruby was on an 18 *month* course of antibiotics, she was having liquid vitamins and we were also learning about other medications she would need. We had just given in to using formula as well as another synthetic substance called PolyJoule to help with her weight gain. I made a promise to her that I would limit the amount of chemicals her body receives as much as I could. So that was my main decision in buying the necklace as opposed to using the teething gels available. 


So in regards to teething, did it work? Well let's say I didn't even notice Ruby had teeth until one day I heard the metal spoon hit them. I had a good look inside her mouth, and there were about 4 pearly whites shining at me! To me, that shows the analgesic qualities in amber help bubbas with teething pains.

Ruby at 7 months wearing her Amber necklace 

And then I started researching it a bit further (as I do). Amber is fossilised resin, which warms against the skin, releasing its therapeutic properties safely and naturally. It’s believed to help and treat the throat, stomach, spleen, kidneys, bladder, liver, and gallbladder, alleviates joint problems, and strengthens the mucus membranes. The words mucus membranes jumped out at me. This is the first area to be hit with parasites and microbes. Not nice for anyone, even worse for someone with Cystic Fibrosis.  

The claims get bigger and better. It draws disease out of the body, aids digestion, and absorbs pain and negative energy. Now I haven't gone and checked all the sources or looked for medical trials. But I did borrow Ruby's necklace once when I had a killer toothache and held it against my cheek. The pain halved immediately. Only drawback was, as soon as I removed the amber, the pain increased again. So I ended up shoving the necklace in my mouth where the sore tooth was. If you have ever had a toothache, you understand that you will do anything to make it better! And that reinforced my belief that amber is not an old wives tale.

I'm not naive enough to believe that Ruby's disease will be cured or fully treated by non-invasive options such as wearing an amber necklace. But I am not going to pass up the opportunity to help my child feel as comfortable as possible without the use of even more drugs. I have since got a necklace for Eliza and one for myself. It is also supposed to help concentration and memory, so maybe I should wear ten!


EarthyMamma has very kindly given us an amber necklace to give away to a reader! Read below on how to enter.

GIVEAWAY
to enter this giveaway please do the following steps

1. Comment on this blog and tell me what benefit of amber appeals to you the most and why
2. Go to www.facebookcom/earthymamma and like their page (they have heaps of great items!)
3. Make sure you are a liker of our Facebook page also (www.facebook.com/teamruby)

Terms and Conditions 

• 1 x amber necklace will be awarded worth $24
• giveaway closes on Thurs 7th June 2012 8.30pm
• Entry is only available to Australian residents only 
• Winner to be chosen by me

Disclosure: I was not paid for this review or giveaway to take place. The opinions expressed on this blog are my own unless otherwise stated.

Clinic Visit May 2012

All 4 of us made the trip to Westmead today. I swear the hospital shrinks every time we go there. It used to be a huge imposing city within a building, now it doesn't seem so big, and only slightly less daunting.

As soon as we get there, Ruby gets weighed and measured. Her weight had dropped ever so slightly but that is to be expected after the 3 months of fighting pseudo. Now that the pseudo is gone, Operation Fat is number one priority again. You would think that keeping your child a healthy weight is easy, but actually it is quite hard. It requires planning, calculating, coaxing and buying extra high fat food. And you can't relax about it, it is never ending. Then you have to factor on the enzymes. No point working hard to serve healthy, high fat meals if you are not giving enough Creon (pancreatic enzymes) to cover it. 

Her lungs sound good, her fingers show no signs of clubbing. Although they were embarrassingly dirty! Eliza took the opportunity to ask the dr if people with Cystic Fibrosis were allowed rabbits, and was very pleased when the answer was yes! With precautions of course with cleanliness. 

Dr Eliza!

Ruby had another sputum sample collected. She has finally worked out that a jar of jellybeans follow the procedure, so no fighting occurred. 

Our CF nurse suctioning for a sputum sample

We took in our new Aeroneb Go nebuliser, and our CF nurse and physiotherapist had lots of questions about it. They were all happy with how it worked, even though Ruby didn't want to wear it for them. They have been recommending to to patients but haven't had many personal reviews on it, so we were happy to provide one. They were amazed at how quick it nebulised 4 mls of hypertonic saline. 

Speaking of saline, the concentration that Ruby has been having was increased. So she was on 3% (which is the same as sea water) and now she is on 6%. Hopefully this will produce a more productive cough.

A while back, Ruby's Vitamin A & E levels were very low so we doubled the dosage of liquid vitamins that she was on. So today she had to have blood tests to check the levels again. And my little warrior didn't even flinch. She just watched the needle go in and then showed off her pretty bandaid. That's the first time we have had no tears xx

Showing off her pretty bandaid (and yet another specimen jar of jellybeans!)

We have booked in to go back for a sweat test. This is one of the ways to diagnose CF. It measures the amount of sodium in sweat. A high reading indicates CF. Although we don't need to confirm Ruby's diagnosis, it is good to have a reading to use as a baseline, especially if she is chosen for any clinical trials.

We also booked in for our next visit which will be her annual checkup. My baby will be 2 years old soon, sob!

Dare To Hope

Maybe you have noticed that I don't often post about a cure. Maybe not.
Some big discoveries have been made in the last 20 years, allowing our kids to make it to teenagers and beyond. We are always working towards a cure. It's something I hope for but something I am not relying on.

A few years ago, a company called Vertex started making real progress with actually changing the way the damaged cells work. It was the closest thing that anyone had ever gotten to a cure. With each bit of progress made, it was shared like wildfire throughout the CF community. Statuses updated, links shared, etc etc.

I was a bit of a party pooper. I never shared the news or let myself become excited about it. To me, it was still too far away. Still at "Today Tonight" level.

So it turned out that the drug wasn't suitable for the majority of the CF population. But from it came a different version of the drug which helped people with the G551D mutation.


I'm getting ahead of myself. Cystic Fibrosis occurs when a baby inherits 2 CF mutations. These mutations/genes have names. The most common mutation is DeltaF508. Ruby has one DeltaF508 and the other mutation she has is 621+1G>T. These mutations stop the process of salt being transferred throughout the cells. The drug that Vertex is producing is making that salt transfer happen, therefore stopping all the symptoms of CF. 


As Ruby doesn't have the mutation that the drug targets, I didn't really think much of it. And to be honest, I thought it would be years before anyone could see the benefits.
Then I started hearing things like this:


Since starting Kalydeco (the brand name of the drug)

"His exercise tolerance blows my mind. The increase in energy has been undeniable."


"A week ago I couldn't chase my dog around my back yard more then two maybe three times. I am now able to do it 5 or 6 times before I feel like I'm about to pass out"






 Sweat tests have lowered, people have been able to stop using Creon, lung function has increased. 




Pretty amazing stuff...life changing stuff! The more of these things I read (and there are HEAPS) of them, the more I allowed myself to think that yes, maybe there will be a cure in Ruby's future. Once they have  
a drug that targets her mutation.






So I'm on Facebook today as normal, and a post pops up on my newsfeed. And the post is written by an American mum who got Kalydeco for her daughter who has the mutations DF508 & 621+1G>Tand how she has been on it for a month with awesome improvements! So that means that there IS hope!


A long way to go with getting the drug to Australia and approved and paid for...but now I have something to focus on xx




The lady who posted about her daughter was posting because her insurance will now no longer cover Kalydeco as she doesn't have the G551D mutation. This means for her daughter to still have this drug, she needs to pay retail, which is $294,000 per year.  



.

How Is She?

If you ask me how Ruby is going, please excuse the strange look on my face while I figure out how to answer you. A simple question but sometimes not quite a simple answer.

You see, the answer will vary depending on who you are and where we are.

If you are a doctor at clinic day, you will get the unabridged version where the answer will cover everything from bowel movements to runny noses.

If you are a close friend or family, you will be told what bugs she is fighting and how she is coping with treatments.

If you are a casual acquaintance that I bump into at the shops, you will probably be told "not too bad thanks"

Because although I really appreciate you taking the time to ask, and for keeping Ruby in your thoughts, I find it hard to answer the question without either grossing you out or boring you to sleep. I guess the technical answer would be something like this;
"she is a bit congested at the moment, but her lungs are clear. Her vitamin D level is borderline and her Vitamin A was low so she will have a blood test at the end of the month to re-check. Her body is responding well to the Tobi although treatment time is sometimes very stressful. She is eating well but her weight is low. Thanks for asking!"

But I guess the most important information can summed up like this;
"she is really happy at the moment, being cheeky and always smiling. We are working really hard to keep her healthy, and although her body is having a bit of an internal battle at the moment, she isn't doing too bad. Thanks for asking!"

So there is the answer to the simple question! (I was always one to over think things)