Archives

CF Wonder Drug

There have been some amazing developments in treatment of cystic fibrosis over the last few years, changing the lives of those living with the condition.

kalydecocollA couple of years ago, the world exploded with the release of Kalydeco. It was a drug aimed at certain CF gene types (there are many types out there, so this drug wasn’t suitable for everyone) 

It is a little pill that treats the underlying cause of cystic fibrosis rather than just the symptoms. The results of the drug were ground-breaking and life changing. People taking the drug were showing lung function improvement of up to 65% and had a new lease on life.

The downfall of such an amazing drug was the price. The cost of Kalydeco was around $300,000 a year! It simply wasn’t affordable.

After much lobbying and petitions, the Australian government approved Kalydeco on to the Pharmaceutical Benefits Scheme (PBS) which caused a sigh of relief around the country as the drug became much more affordable.

orkamabiFast forward to 2016, and another drug has hit the market. This one is called Orkambi, which is aimed at another gene type. Our family is excited about this one as it is aimed at Cameron’s gene type! This drug is expected to help almost half the Australian CF population. It has similar effects as Kalydeco

Again, the downfall is the price. Orkambi is currently about $260,000 a year!!

There was a recent petition to have it placed on the PBS list to make it affordable for everyone. However in the “wisdom” of the Australian government, they REJECTED the bid, claiming it was not “cost-effective”.

I don’t understand how they could think this? It is improving quality of life. It is improving health, which means less of other medications, less treatments, less time in hospital. Surely that all adds up in the end?

price

How much? Too much!!

So the petitions are starting again. Click here to sign and help show your support.

This drug is important and needs to be made more affordable! Lives depend on it!

Bella 🙂

Our CF journey so far…

On the 16th May, it will be seven years since our family was completed. On the 12th June, it will be seven years since our family member’s lives were irreversibly changed by two little letters.

Cam funny

Cam- our little joker!

The last seven years has had its up’s and down’s. Cameron is a vivacious little boy who lives his life to the fullest. He doesn’t walk, he runs through life (literally and figuratively!) If there is a joke to be found…Cam will find it! His diagnosis has not dragged him down in the slightest.

But that doesn’t mean there haven’t been hard times.

In the last seven years, Cam has been admitted in to hospital four times. There was one when he was diagnosed, sick with double pneumonia and underweight due to malabsorption.

The second time was when he was two years old. A bronchoscopy at annual review that year showed he was growing the dreaded super-bug Pseudomonas in his lungs, which is an instant minimum two-week admission into hospital for intravenous antibiotics.

Cam sick

Hospital is never fun 😦

The third time was unrelated to his cystic fibrosis. He had severe tonsillitis and his throat closed over. It was a scary 24 hours! We were more worried about that than anything he had gone through with his CF by that point.

The fourth time, he was five years old, and another routine bronchoscopy showed Pseudomonas again, which resulted in a gruelling two weeks in hospital and another week of treatment at home. We were all exhausted by the end, and it was a rather traumatic experience for Cam which resulted in a slight fear of needles.

Over the years, he has also had a staph infection twice. The first time, we discovered he was allergic to one of the antibiotics they used to treat it.

Cam nebuliser

He hates nebulizer treatments

He currently has about 30-35 tablets a day to keep him healthy. This includes Creon tablets (which help him digest his food), salt tablets (as salt loss is massive with CF-ers), a multivitamin, Vitamin D tablets (to ward off osteoporosis, which is high risk in CF-ers) and antibiotics to prevent infections. This doesn’t include when he has a moist cough, where we treat him with two weeks of nebulizer antibiotics at home. If there is no improvement after that time, it requires a hospital admission for IV drugs.

Cam Pep

Cam using his PEP mask. He will try anything to get out of doing it

He has progressed from percussion physiotherapy to resistance breathing techniques using a PEP mask and “huffing” through a wide pipe to help move any mucous around in his lungs. He is now in charge of his own physiotherapy (of course, under close watch by us, as he is well-known for trying to worm his way out of it!)

His high fat, high salt diet is now easily maintained. It was a massive learning curve when he started solids, but now we just add the “goodies” to meals once separated from the rest of the family’s meal, or add a few extra high-calorie snacks to his lunch box, and extra helpings whenever he requests. Cam is a little on the shorter side, but in terms or weight and build…he is actually a little Buddha for a CF kid , who are generally notoriously lanky/skinny.

Cam eating

This kid LOVES his food!

He is pretty good about dealing with his condition. About two years ago, he had a little breakdown. He suddenly didn’t want to do his physio. He didn’t want to have his medication. He didn’t want needles. He didn’t want to see doctors. He didn’t want to have cystic fibrosis anymore. There was a bit of focus on him at school as he was in pre-primary, and the other kids were taking notice that he was a bit different. In the past, his outlook was “I am different, and that makes me AWESOME!”…suddenly, it was “I’m different, and I don’t know if I like it anymore…”

We decided to just pull back a bit and allow him to work through it on his own. We didn’t push him in to anything he didn’t want to do (with the exception of physio and medication…sorry buddy…no escaping that!) We let him talk things out. I spoke to his teacher, and they tried to make things as discreet as possible at school (ie. having medication away from the rest of class)

I have to admit, I was a bit surprised at how young he was when his “breakdown” came. I am sure that many more are expected over the coming years, but I’m sure we can work through it.

We don’t stop Cam from doing anything. We want him to experience everything he can. He recently started sword fighting classes, which he loves considering he loves pirates and ninjas! He has a great circle of friends who understand his condition, but don’t see him as his condition. He plays pranks on his family, much to our chagrin sometimes. He also gives the best cuddles (but not in front of anyone….of course!)

Silly Cam

Nothing is going to stop this kid!

Life certainly isn’t easy when you live with cystic fibrosis, but it certainly isn’t as bad as what I envisioned it would be when he was first diagnosed. I’m not making light of the condition….CF sucks…it truly, truly sucks. But we have been lucky with our experience so far….a lot of other families haven’t.

May is CF Awareness Month. 65 Roses Day is on the 27th May this year. All I ask is that you take a moment to familiarize yourself with the condition. I’m not going to push for donations (though it would be awesome if you could) but the whole focus is awareness.

I just hope that sharing our experiences, it sheds a little light.

 

Bella 🙂

 

That day has arrived!

I have been dreaming about it for four and a half years!

Last week, my youngest son started pre-primary schooling!! All four kids are now in full-time school!!! In the same location!! At the same time (between 8:30am and 3:10pm!)
The idea of five days a week without having to hear “But Mu-u-u-m!!”, or “So-and-so took my toys” or “I’m hungry!” has felt like a distant dream…until last Monday.

IMG_0013

First day of school, 2014

While a massive part of me wanted to kick my heel together and skip out the school gates, there was a small bit of worry lurking in the depths of my stomach as well.

Cameron was at daycare for around two years. The staff all had training from the CF Association for his cystic fibrosis,. They worked very closely with me for his meals in regards to his special diet. They worked breathing exercises  into their daily programs so Cam could do his physio, without being obvious to other kids. I also wrote out medical forms every day to specify how many tablets he had to have, and when.

This was the cause of my worry about starting school.

(NOT Cam's lunchbox!) This is a representation of  a CF lunchbox. Seperated into meals. The round, blue containers contain the medication.

(NOT Cam’s lunchbox!)
This is a representation of a CF lunchbox. Separated into meals. The round, blue containers contain the medication.

The CF Association came to town a few days before school started and did a presentation to the school staff. I was present to make the information more personalised to Cameron’s needs. The staff seem to be switched on and are welcome to approach me with any questions (which they already have- just to clarify they are doing it correctly) Cameron takes his medication in his lunch box, and administers himself. I leave a note in different sections of his lunch box to let him (and the staff) know how many tablets to take for morning tea, lunch…etc..

Let me clarify right here….I am a control freak! This loss of control over knowing how many tablets he is taking…especially IF he is actually taking them just about has me starting the bad habit of nail-biting.

I trust Cam will take them. I trust that he will not start eating his meals without having his tablets. But there is still this niggling worry that something will go wrong somewhere.
At daycare, it was all written out for the staff. They stood over him and watched him have his tablets (he still administered himself, I believe). All staff in the building had CF training, whether they worked in his room or elsewhere….everyone KNEW Cam’s needs and their importance.
My biggest concern is that the teachers, aides (etc.)….but especially relief teachers…will miss the significance. The importance.

One part of my brain is trying to soothe me, saying “It will be ok. Other CF kids go to school!”….but another part of my brain is replying “But this is MY child!!! If they screw up…even just a little…it could mean pain!”

Cameron is absolutely LOVING school. In terms of medication at school….so far, so good!

He missed out on the last three days from the first week of school due to a medical check-up in Perth (another story in itself) but he is keen to return next week.

He is so eager to be a “big boy”. I’m eager to have “quiet child-free time”!! This is what is slowly calming my worries!

Everyone says “You wont know what to do with yourself now that they are all at school.”

Trust me…I know EXACTLY what I am going to be doing! I have a massive stack of books to read. I have a mound of paperwork I have been pushing aside due to lack of energy and concentration. I have friends who I have been neglecting. I have a giant pile of coffee pods to drink. I have many tv shows recorded.

I will be fine!

How was your first day of school?
Bella 🙂

The realisation of mortality

Hi everyone, I’m sorry it has been a while….but it’s been a bit rough around here lately.

Cam during nebuliser treatment

Cam during nebulizer treatment

Cameron’s health hasn’t been the greatest for a while now. A few weeks after our last annual review, he got very ill. I hadn’t seen him that sick since he was diagnosed! We found out his bronchoscopy had results showing he was growing Staphylococcus (staph), which can cause major havoc on CF lungs.
We started nebulizer antibiotics, which showed good results for a while.

He is now coming into his fourth week of nebulizers, but in the last few days, he has gone downhill again. He is coughing a lot, breathless, has no energy, grumpy as hell and off his food. This has caused us some major concern!
We are just waiting for two more new antibiotics to arrive from the specialists in Perth. One is an oral antibiotic, designed specifically to treat staph infections. The other is a very strong nebulizer antibiotic (again, designed specifically for staph), which when it arrives, we have to arrange with our local hospital to administer the first dose so that he can be medically monitored for any side-effects. Providing it all goes well in the ER with first dose, we will be continuing them at home. So for the next month, he will be on four different antibiotics!!
I am glad that we have narrowly dodged a hospital admission at this stage, though I have this niggling worry that it will inevitable. Please wish us luck and we welcome all healthy vibes that are sent our way!

I will keep you updated with his progress when I can.

We live with CF every day. We know the risks involved, what might or even what WILL happen during the journey of this condition. But knowing it, and being AWARE of it are two very different things.
I constantly talk about CF. I raise awareness as much as I can. I try to stay up to date with medical updates. But when your little one is very sick because of the condition, you remember, it’s not just about being knowledgable. The “la-la land” bubble bursts and all these things you “know” about are an “in-your-face” reality. This is my son’s life. This is his permanent battle. THIS SUCKS!

While we are dealing with this, the dirty “C” word has infiltrated itself into the family. No…not that dirty “C” word…..the other one….cancer. I don’t want to breach the privacy of the family member who has been battling this for a while by revealing too much on my blog (and I hope they don’t mind too much that I have written about it right now) Our head spaces have been zooming all over. We have also had to come to terms with the fall out of this nasty, evil condition as well.

My own health hasn’t been the best lately either. I am currently trying to quit smoking. I have to do this, I need to do this….I WILL do this. But like previous attempts at quitting, my lungs go spastic on me. I always get chest infections when I attempt to quit. But a recent incident brought home my own mortality.
For a week, I was tight chested, wheezing slightly….the symptoms I usually get in the days after my last cigarettes. But three nights in a row, I couldn’t lie on my right hand side (left hand side or stomach was fine, as was upright…I could breathe). On my right side, I would instantly stop being able to breathe and would go into a coughing fit that would take half an hour to recover from. I tried to hold out until Monday, when I could see my doctor, but on Sunday morning, I woke up on my right hand side. It took forever to be able to catch a breath. I was legitimately worried about dying right then and there….so I took off to the emergency room.

They gotta go. I KNOW I have to stop!

They gotta go. I KNOW I have to stop!

I was treated very thoroughly…more so than I ever have before. I had three nebulizers to relax my airways, and two steroid tablets. They did a chest x-ray, which came back clear and gave a sputum sample. They even inserted a canula into my hand, gave me a fluid drip and took blood to test everything from white blood cell counts, to salt and insulin levels. It didn’t feel like an asthma attack, but it didn’t feel like a usual chest infection either. While they treated and got rid of most of the symptoms, most of the tests came back clear, so we don’t know exactly what caused the respiratory distress yet. I have to call for the last few results tomorrow…so hopefully I get some answers.

While I am feeling much better, the experience scared me greatly. With Cameron’s current health scare, plus the cancer in the family, all I could think of was “I am not allowed to die! I can’t do that to the family…not now! I am too young! My family is too young for me to go!” I came to realise, like most mothers, while I am very good at looking after my family, I also need to look after myself! I am getting back on track with my diet, the cigarettes are in the past, and I need to look after myself better mentally and spiritually as well.

I have been under a lot of emotional stress lately. I am run down. My husband and I have started scaling back our workload a little to take the strain off. This is already an immense relief. I need to make more time for my family.

I need to make more time for ME!

Bella 🙂

CF annual review-July, 2013

A couple of weeks ago, my husband and I took Cameron on the long trip back to Princess Margaret Hospital for Children in Perth for his annual CF review. We also had our daughter, Eva, in tow so that she could be reassessed for her respiratory issues.

Our first appointment of the day was for Cameron’s lung function test.
He had just started doing this new type of lung function test at his last clinic visit only 3 months prior as he was now at an age to start using the testing machine, “Mr. Wobbly” (called so because of the way it makes your cheeks wobble during the testing phase)

Cam's stage one lung function test- "Mr. Wobbly"

Cam’s stage one lung function test- “Mr. Wobbly”

He aced it on his first go, and had no trouble completing it again this time around. He also did this new test that they have started doing on younger kids where they breath in pure oxygen for a short period, then test how long it takes for the carbon dioxide levels to go back to normal. This apparently helps to indicate if all areas of the lungs are being used. He did very well and completed this task without an issue. Very proud mumma right here!

Cam during stage two of lung function test. I'm sure there is a proper name for this particular procedure, but I missed what it was...

Cam during stage two of lung function test. I’m sure there is a proper name for this particular procedure, but I missed what it was…

We had a quick look at the results on our way back to the clinic area, but could not make heads or tails or what the figures meant. But since nothing was highlighted in red, we assume everything is still going really well.

Then he had to be measured, as is routine at the start of every clinic. The little fatty boombah put on another 300-400g in the last three months, putting him just under 20kg. This puts him on about the 80th percentile for weight.
I can’t remember how tall he is (110cm rings a bell…) and I’m not sure how much he has grown recently, but they are happy that he is steadily travelling along the 25th percentile for height (which is great, as I was told that height can quite often be stunted in CF)

The first CF team member we saw was the physiotherapist, who makes sure that he is still undergoing his physio techniques properly. This meant watching him use his PEP mask, doing a few percussion motions and making sure we are still using the correct hand motions. She also checked his shoulders. Apparently his left shoulder is a bit “tight” which can cause a hunch. This stops the chest cavity opening up properly and the lungs don’t take a full breath. So we have to get him stretching and hanging (like on monkey bars or tree branches, etc)

We then saw the dietician and gastroentologist together. They were very happy with his weight gain and his dietary intake.

Cameron has an intolerance to fresh dairy (milks, yoghurts, cheese…etc…but once cooked, it’s not a problem…so things like cakes and sauces aren’t a problem!) It’s more of a dairy protein intolerance. We figured it out when he was about a year old and we were trying to make the change from formula to cow’s milk. I tried everything under the sun….goat milk, oat milk, rice milk, lactose free milk….everything….and soy is the only thing he could tolerate. Apparently the protein levels in these other types are very similar to cow’s milk….which is how we came to the dairy protein intolerance diagnosis.
We were told that if kids couldnt tolerate these foods by the time they were about 5-6 years old, they probably would never be able to,

dairy free
So the team were very happy to hear that is starting to tolerate fresh dairy a bit better. He has normal dairy yoghurt, custards, a bit of cheese (though not too much in a day, or it sets him off all bloated, gassy…and well…messy!!) We havent attempted cow’s milk yet, but he is still happy enough on soy milk. When he has normal dairy foods, we find it helpful to give him an extra Creon tablet (enzyme medication which helps to break down the fat in his foods during digestion) So if he were to have some yoghurt, and fat content requires him to have 2 Creon tablets, we give him 3 instead….which works well.
They told us to keep trying to introduce dairy to his diet and see how he goes. Soy doesn’t have the same calorie and fat content of dairy, which makes it more difficult to boost fats in the CF diet, but we obviously seem to be managing!

They also told me that they now require all CF patients to take Vitamin D supplements as the multivitamin (VITABDECK) was not substantial enough for absorption levels. Since Cam was already on Vitamin D levels, and on a higher dosage than what they normally make standard for everyone, he is to remain on this dosage as it seems to be working for him.

They were going to take some blood samples during his bronchoscopy later in the week to test for other things, like salt levels (which there was a slight increase in his daily intake of sodium chloride solution) and iron levels (which have been borderline needing medication for a long while now, but they are hesitant to prescribe medication for it as it can cause constipation, which can already be a major issue for CF-er’s with their digestive issues)
I havent heard anything since returning home, no phone calls about needing extra medications, so I can only assume that they were nothing to worry about until we see them again in three months.

We then saw the respiratory doctor. He was very happy with Cam’s progress, especially since he has managed to escape all the winter bugs so far (wish I could say the same about the rest of the family though!!)

I'm sure there are plenty out there who can relate...

I’m sure there are plenty out there who can relate…

When we arrived at the hospital (since we had just gotten off the highway and went straight to the hospital for appointments) I realised I made a MASSIVE mistake…..I had left ALL of Cam’s medications at home, including his Creon!! I can’t stress how much an issue this was. Since he had only eaten things in the car which didnt require any medication (fruit, etc) we didn’t realise until then that we had no medications so that Cam could have lunch!
We sucked it up, and gave Cam a sandwich anyway, thinking we would just have to deal with the mess later (without Creon, food passes straight through, undigested. It makes an almighty, smelly mess in its wake 😦 ) 
We got a doctor to quickly write a prescription for all of Cam’s medications and handed it in to pharmacy at the hospital, hoping it would be filled quickly.

But no, we spent more time waiting for the medications than we did seeing specialists. Normally, to avoid the wait, we hand in the prescription and pick it up the next day, but due to the urgency, we had to wait around. That was more exhausting than seeing the team!

There is a lot more to write about, such as Cam’s bronchoscopy, and Eva’s check up…both are long stories that can be set aside for another post. So keep an eye out!!

Bella 🙂

An eventful CF clinic visit…

Only a few short hours ago, we returned from our latest CF clinic visit at Princess Margaret Hospital in Perth.

The drive up (about 450km) was horrendous due to a lot of road works. The weather was even worse!

When we finally arrived to the hospital car park, my husband was trying to get Cameron out of his car seat (while Ethan and I were loitering around nearby, waiting) when the heavens opened. Hubby had the smart idea, and jumped into the backseat to wait it out.
Ethan and I, already slightly damp, were in a position where we were committed to making a run for it.

That was when things really pelted down!!!

Ethan hates water, especially cold water, so he was screaming and crying during the whole mad dash. Mark and Cameron caught up soon after, but missed the worst of it….but we were all drenched. Luckily, I has the smart idea to grab one of the kids clothing bags (as we hadn’t booked into our hotel room yet) so I was able to change the boys into dry clothes, but we were still bombarded with looks of sympathy from the other families in this clinic area as we were provided with towels by the nursing staff. I literally had to pour water out of my shoes, but my main concern was the boys catching a chill and developing a cough in this cold weather.

Cameron has put on a staggering 3kg in the last three months, which is awesome! While we have never really struggled with weight gain, there was a concern for a while when he was hardly putting any weight on…but that was during a time when the house was constantly bombarded with the gastro bug.
He is very stocky and muscular…and not at all happy with hubby and I at being told he is too heavy to be carried around any more!

Meet "Mr. Wobbly"- called so because he makes your cheeks "wobble" during the test.

Meet “Mr. Wobbly”- called so because he makes your cheeks “wobble” during the test.

Since he turns four years old next week, he is now old enough to try the “Mr. Wobbly” machine to test lung function. So off we toddled to the respiratory department to attempt this new test (previously, he undertook the infant lung function test, where he was sedated, placed in a special vest, then had air pumped into his lungs, then the vest would squeeze it out and record the reading)

I am very proud to announce that his first attempt went very well and we were able to get a good reading! While heading back to the clinic area with test results in hand, hubby and I had a quick read…but could not make heads or tails of the results. We assume that since nothing was highlighted in red to show that levels were outside of normal results, that everything is all good!

With a lot of waiting around, we finally saw the respiratory doctor, who was very happy with Cam’s progress.

We brought up the subject of my daughter, Eva, who is a CF gene carrier, and has floppy airways and frequently gets croup. There is still a slim possibility she may also have CF, (though the specialists are fairly confident she doesn’t actually have it) but due to her current respiratory issues, they are still monitoring her.
Winter is horrible for her, with endless bouts of croup and nasty sounding coughs, which can last for weeks. For the last three weeks or so, her coughing has progressively gotten worse, especially in cold air, worse again at night, then worse again when she lays down in bed.
The doctor recommended undertaking a week of Augmentin Duo (antibiotic) for a week, then trying Ventolin (reliever inhaler) for a week. We are to try them for a week at different times (instead of the same time) to see the results of each. He was pretty sure that neither would work, and she may have to trial Flixotide (steroid inhaler)
Since we have only just come home today, we will be starting these treatments tomorrow, so I will keep you updated with her.

According to Ethan, lollypops do NOT make everything OK!

According to Ethan, lollypops do NOT make everything OK! (not an original photo shown)

Cameron and Ethan both received their flu vaccinations while we were waiting in clinic. Cam is used to being poked, prodded and jabbed, so when the nurse pushed the needle in his arm, he gave her a small, indignant “Ow!” (Hubby was with him, and I was sitting about 5m away with Ethan, and I didn’t even hear a peep!)

When Cameron walked back, proudly showing off his lollypop reward to his brother, Ethan was quick to say he wanted one too. I warned him that he was going to have to have some medicine first in order to be allowed to have a lollypop too. He gave me a brave nod and a confident “Okay!”, took his father’s hand, and went to meet the nurse.

Within minutes, all heads in the clinic turned towards our direction in alarm when we all heard hysterical screaming of pain!!! When the adults saw me laughing, they realised that my son was receiving his shots, and gave us looks of sympathy, while giggling along. One very red-faced, teary five-year-old boy walked up to me, holding his lollypop like a second place trophy while looking at it as if to say “Was it worth it, for THIS?”

Little does he know, since it was the first time he has had the flu vaccine, he is going to have to go through the ordeal again in four weeks time for a second dose!

In a way, it was a pointless trip, as Cameron’s health is pretty good, but we needed to restock medications (and it would have cost a bucket load to have them sent to us), he was able to take the next step is CF monitoring by being able to undertake this new way of lung function tests, and the boys are prepared for winter with the flu vaccine (just need to get the rest of us done now).

As much as clinic visits are a drain- physically, emotionally and financially they are an essential part of CF treatment.

Bella 🙂

Asthma Peeps (product review)

I have recently been given the opportunity to test a product that is aimed at children who have asthma. The reason I put my hand up for this project was because a lot of people who have cystic fibrosis also do inhaler treatments.

Asthma Peeps is an Australian business who creates nifty little stickers suitable for spacers to make treatment more fun for children. Imagine, a child who is excited and happy to have their inhalers because their spacers are customised to their budding personalities. No fighting. No excuses. Job done.

Pirate theme stickers

Pirate theme stickers

In our little sample pack, we were sent some pirate stickers, which was absolutely perfect as my CF son, Cameron, is obsessed with pirates at the moment. Every second day, he is dressed up as one, and I can never keep up with if he wants to be called by his given name, or “Mr. Smee” (which for those who dont know, is Captain Hook’s minion.)

Cameron...or Mr. Smee?

Cameron…or Mr. Smee?

Personalized spacer for inhaler treatments

Personalized spacer for inhaler treatments

Cameron was excited to help choose and place his stickers. Under each picture is a little space for you to be able to label their names.(A nice touch in my opinion.) We hit one snag with our testing phase though. Cameron doesn’t undertake any inhaler treatments for his CF! I still gave him the spacer to breathe through, which I didn’t mind as it encourages him to do deep breathing, which is also vital for CF physiotherapy.

So while I was standing there with another two sheets of stickers, I starting looking around for what else I could personalize. Then a brain wave came. Why stop at spacers? Cameron also uses other asthma tools for his physiotherapy. He has that little thing with the three coloured balls, that lift when you breathe in, and the idea is to get as many balls to the top as possible. (I’m sure there is an actual name for the device, but I have no idea what it is! We just call it the “Coloured ball thingy”)

Personalized PEP mask

Personalized PEP mask

Cameron also has a PEP mask. It has resistance when he breathes out. The better he gets at it, the more we increased the resistance. Stickers now decorate that too.

He giggles as he uses the mask, and the stickers we put on the “coloured ball thingy” are a good way for him to indicate how many faces he can achieve.

The stickers are fairly durable when you wash them – hand washing that is,not sure how they would hold up in a dishwasher (can these devices even go in a dishwasher???) This is great because there is no point on wasting your money on something that falls off in the slightest bit of water.
They don’t stick too well on silicone, as we did try them on another mask, but they fell off pretty quick!

"Coloured ball thingy" Does anyone know what it is actually called?

“Coloured ball thingy” Does anyone know what it is actually called?

Each pack of stickers retails for $9.75. There are other asthma related product available on the Asthma Peeps online store

Visit http://www.asthmapeeps.com/ today and check out all the different designs!

Bella 🙂