Tag Archive | diet

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 🙂

Weight loss update

I recently realised that it has been about a year and a half since I started my weight loss battle, and haven’t written any sort of update in the meantime.
scales
I will admit, I fell off the bandwagon…multiple times…during that period.

Christmas 2011 didn’t go too badly. We were using the Rapid Loss shakes fairly comfortably at the time, and didn’t go too crazy with festive foods. When I jumped on the scales around New Year’s, I was really happy to see that I had lost a couple of kilos over the Christmas period, rather than the usual gain!

I stopped using Rapid Loss after a few months, as I wasn’t seeing the results anymore. Before you say it, I know that you sometimes plateau, but I just didn’t feel that it was the right path for me anymore.

Life got busy….I got lazy…both with my exercise, and with my cooking. Simple meals that required little effort generally meant that they weren’t all that beneficial to the waist line or scales.

Just before Christmas 2012, I decided that I needed to work harder again.

Since then, I have started walking a bit more often, and adjusted my diet. I stopped skipping breakfast, scaled back how many iced coffees I would have (still have some occasionally, but nowhere near as much…and ask any of my old highschool buddies…that is a big deal!) and I ate salads as often as I could.

I am addicted to panzanella again. I am that hooked that I cannot bring myself to even consider, let alone enjoy, any other type of salad. So many times I have made up a container of panzanella at night, put it in the fridge….only to pull it out later and continue to pick at it all evening until there isn’t enough left for lunch the next day! Can’t complain too much when your late-night snacks is a salad!

Oh Charlene...I know exactly how you feel!

Oh Charlene…I know exactly how you feel!

We threw out our bathroom scales as well. They were digital, and were in no way accurate anymore. They would tell me that I had lost 4-5 kg in the space of about three weeks, then suddenly, at that time of the month…. KABLAMMO!!! Apparently I would put the kilos back on again…overnight!!

Fluid retention has been a problem during the monthly hormone cycles for a few years now…but I highly doubt that I was putting that much on in only a few hours without a noticeable difference (maybe even with some pain?)

So the scales landed in the wheelie bin.

Now, I borrow one of my client’s scales when I’m cleaning her bathroom. I am only there once a fortnight, so I’m able to see larger results. This is a good motivator and ego booster, rather than doing daily weighs, where you are only seeing small results and getting disheartened by it.

 

Now to announce how much I have lost so far (all since the start of 2013)…..drum roll please……

 

14 KILOGRAMS!!!! (or about 30lbs…depending where my readers are from!)

While not to scale, I am probably at about stage two of this diagram!

While not to scale, I am probably at about stage two of this diagram!


I still have about 30kg to get to the weight that is healthy for my height and build. Only another 15kg until I am eligible to have breast reduction surgery (one of my goals…cant wait for these mumma-bahummas to get smaller!)

I’m feeling pretty confident still, and with how much exercise I am getting through work at the moment, I am sure it wont be another 18 months before I can announce that I have lost even more weight.

Please share your experiences!
Bella 🙂

Never ending- an update

I have been a little quiet lately. My poor husband has injured his shoulder quite badly, which means I have been helping out by covering his work in our cleaning business. It is going to take a while for him to recover, so if you don’t hear much from me over the next few weeks, that is the reason why.

I wish to thank everyone who gave advice about the constipation issue we have been having with my middle son (both on the blog post and on the Facebook fan page.)

Our GP has the series of these books displayed in his office since his name is Toby!

Our GP has the series of these books displayed in his office since his name is Toby!

We have started seeing our GP (general practitioner) doctor for the issue. This guy is awesome. He managed my pregnancies and tried to deliver my babies (if he made it there in time!) He also broke the news of my youngest son’s cystic fibrosis diagnosis, which affected him greatly, as it was apparently the first time he had to break “BIG bad news” like that, and he knew our family quite well. He apparently admitted to my mum the night of diagnosis while I went home to pack bags to be flown to the next hospital that he was somewhat glad that it was me that he had to give this heartbreaking news to. It’s absolutely not because he didn’t like us and wished us hardship…it was because he knew we could cope with the diagnosis, and that I was able to hold myself together while he broke the news (I guess in comparison to other patients, who probably would have fallen to pieces.)
He has since managed Cameron’s CF as best he can under the guidance of the CF team in Perth (since we are country patients), the team love him for his support and the fact that he follows their directions…apparently something not all doctors do in their experience.

I trust my doctor completely. I know that he will not stop until we have answers, and he is willing to go above and beyond for his patients. He also knows that if I come to him with an issue, it is a legitimate worry, I’m not just arriving in his office for a sniffle or a meagre problem.

Mutual respect is essential with your doctors!

When I arrived two weeks ago with Ethan in tow, and told him of the serious issues we were having with the chronic constipation, which has caused us to make three visits to the emergency room since the start of the year, numerous amounts of medication (laxatives, suppositories, enemas….tried it all), and the issues the fecal overflow/accidents in the underpants was causing both at school and at home…he immediately took action. We are currently giving high doses of different laxatives to clear out Ethan’s intestines. He is on Movicol twice daily, Actilax twice daily, and Parachoc twice daily. Basically, we wanted him to get to the point of diarrhea to flush out his system before we take the next steps. In no way was he allowed to get even remotely constipated in the next two weeks, or basically, we would have had to start all over again

It took about a week for all the laxatives to take effect. After two weeks of all this medication, we went back to our GP for another assessment (this happened only yesterday.) The doctor was very happy at how much better his stomach felt…nice and soft, rather than lumpy and hard in places. He was also very happy to hear that Ethan isn’t having as many accidents in his undies. It used to happen about six times a day. It now happens only a couple of days. Still a drama, but definitely an improvement!

We are to continue the laxatives for another two weeks, but this time, add Benefibre to his drinks daily, which will absorb some of the extra fluid in his tract, and make his stools a bit more solid. We return in two weeks for another assessment to figure out where to go from there.

We also saw a dietician, as part of a feeding team, to assess his food aversion. This woman told me that Ethan’s diet isn’t too bad. I really don’t agree with that (neither does my GP), but I have taken steps to change that. We have increased his water intake, and I have started making muffins/cakes to put in lunch boxes or to eat as snacks at home, which is loaded with fruit and veggies (recipe at the bottom). We are going to try different types of milk when he has finished his medications, just to test a theory that there might be a bit of an intolerance causing the constipation. Ethan’s main “homework” is that he has promised to try at least one new food before we see the dietician again. He has agreed to try chicken…not chicken nuggets, but real chicken (we haven’t tried it yet.) He has also had a bit of a nibble on a carrot, after our babysitter (who he has a bit of a crush on) enticed him with a promise of a hug and kiss if he would at least try it. Since he is very much a Casanova, the ploy worked!

Basically this is going to be a long, ongoing battle, but I will keep you all updated.

Bella 🙂

***Here is my cake recipe. It’s a bit of a “thrown-together” recipe, as I just add whatever I have in the cupboard until it looks about right, but feel free to make your own tweaks:

Bella's fruit and veggie cake

Bella’s Fruit and Veggie Cake

1 carrot, grated
1/2 small zucchini, grated

Large handful baby spinach, finely chopped

2 apples, grated

1 pear, grated

2 eggs

40 ml oil

1.5 cup Self raising flour

60 ml milk

1) Combine all grated fruit and vegetables in a large bowl. Add eggs, combine thoroughly.
2.) Add milk and oil to bowl, mix thoroughly. Slowly sift flour through mixture in parts.

3) Add more flour or milk to reach desired consistency
4.) Pour mix into a large, grease cake tin, or separate into muffin tins.

5.) Bake at about 160 degrees celsius until golden and cooked through.

In desperate need of advice!

To all my readers, please help!

My middle son, who is five and half years old, has a massive problem at the moment. I will start with a long story to lead up to my question (and I apologise in advance for the information overload!)

Just EAT dang nammit!

Just EAT, dang nammit!

For the last few years, he has been an exceptionally picky eater. This kid doesn’t eat meat, fresh chicken (but will eat chicken nuggets), vegetables, pasta, rice and most fruit! For as long as I can remember, he has been living on bread, cheese, yoghurt, bananas, pears, chicken nuggets, hash browns and polony (only recently branching out to cereal and eggs)
Basically, the more processed it is, the better!
Of course, I realise this is a terrible diet, but the kid has to eat something! I tried to be tough on him, and that if he didn’t eat what was put in front of him, then he would not get dessert, and went to bed hungry. But he is just as stubborn as I am, and would happily go off to bed with his stomach empty. After a couple of days of not eating his evening meals, I would cave and give him cheese on toast, so he would at least have something in his belly!

It’s weird. If the other kids are having pizza, he isn’t interested, but would have cheese, ham and sauce on toast (go figure!?) He did recently try pizza for the first time at my Mum’s house, so hopefully I can convince him to eat it at home now!
At Christmas, we realised how much he loves eggs too, as he devoured about 7 boiled eggs! So now, he will happily eat quiche (but in our house, we have to call them “Eggy cakes” for him to eat them) I have tried to start hiding veggies in them, with zucchini making it down the hatch without any question. However, if I try putting carrot in them, he wont touch it! He wont even eat carrot cake because of 1.) the name, and 2.) because it has carrot in it!

A few months ago, my concerns for a balanced diet reached an all time high, as he was showing signs of malnourishment. He looked like an Ethiopian orphan…skinny arms and legs, spine visible, with a distended belly. So I started giving him a glass of fruit and veggie juice at least once a day. I made him pick out a special bottle and it became known as “Ethan’s special juice” (In no way was I going to tell him what was actually in it…but at least he was excited to drink it!)
About three months ago, I was talking with an occupational therapist, who was a guest speaker at my special needs support group, who recommended that we put in a referral to see a feeding team to get him to eat properly. This is a team of dieticians, speech therapists and occupational therapists.

A psychologist is being considered, as he will start making excuses as to why he cant eat if  he finds out earlier in the day that dinner is something he doesn’t like (ie. Im too tired to eat…etc) If he has the plate in front of him, he will actually start shaking as the food approaches his mouth. If (say, for example, a tiny piece of chicken breast) manages to make it into his mouth, he will gag on it, but hide it under his tongue and will say he swallowed it.

I jumped on board and got the paperwork started. We are still waiting for our first appointment.

We were so happy and proud when we didnt have to use these anymore.Do we need them again? :S

We were so happy and proud when we didnt have to use these anymore.
Do we need them again? :S

For at least a year, he would make a mess in his pants, but not know he had done it. If you asked if he had a “stinky bum” (code in our house for having done poos…sorry for the “too much information”) he would reply with an innocent “No!”
He would have a smear in his pants, but it would stink out the house with a distinctive and unmistakable smell. The problem was that he had no idea that he had done it. Doing wees on the toilet wasn’t an issue, however I couldn’t trust him to wear undies, so he was constantly in nappies or pull-ups.
I tried to give laxatives every now and then, thinking constipation was probably the issue. I thought it worked, but it would just happen all over again a few days later.

The crunch came around New Year’s, where one night he couldn’t eat anymore, not even his beloved toast, and was complaining of a sore belly. I poked around his belly, with possible appendicitis in mind, to find that his belly felt rock hard. I sent him to bed and decided to see what he was like overnight.

By morning, I could actually see his large intestine bulging through his stomach. I knew that there was a serious problem. I took him up to the emergency room at the hospital, where they performed an xray on his stomach. It showed chronic constipation, with a lump the size of a fist in his pelvis, and enough poop backed up the intestine to hypothetically fill a football! He was in some serious trouble! The small amount of mess in his pants daily was because of fecal overflow, where poop was leaking around the blockages. The reason he didn’t know it was happening was because the anal muscles were that stretched, they had lost the ability to tell that there was poop there.

The hospital staff gave him oral laxative, and an enema (which of course he didn’t enjoy) We were sent on our way with a warning that we had about 20min to get home before things started happening.
Unfortunately, I had to take off to work straight after, leaving him in the care of my husband…and Ethan screaming on the toilet over his ordeal. When I came home, my husband said that it seemed to do the trick. He was able to eat again, but we were still getting the smears 😦

About 5 weeks ago (around 2-3 weeks before he was due to start pre-primary) I woke up to a massive mess. I have never seen that much poop before…but it was obviously what he needed, because after that, he was consistently using the toilet, no accidents. We were jumping for joy that he was able to start wearing undies again.
By the skin of his teeth, he was in undies when he started school. A massive load came off my shoulders…until about a week and half ago…

He has started messing his pants again. Despite the advances in what he is eating, he is obviously “bunged up” again 😦

This is becoming an issue at school. We don’t want him becoming notorious for smelling and messing his pants. It can’t be comfortable for him, and it is a bit of a health hazard for the other children. It is happening daily.

His teacher has pulled me aside a few times to discuss the issue. She is an awesome teacher who knows all the dramas in our family (and feels so sorry for me because of this extra stress) She is going to speak with the school nurse for advice in the meantime.

I obviously need to put him back on laxatives for a while. I will also be booking an appointment with our GP. I am desperate for advice from parents who may have gone through a similar situation, as I am honestly lost as to what to do!

I am pleading...I am desperate for advice!

I am pleading…I am desperate for advice!

If anyone out there had any advice, whatsoever….please, please share! (Bare in mind, I have taken the steps to get professional medical advice.)

Bella 🙂

Recipes for CF

Thanks to a friend, I came across this great Facebook page of CF fat boosting recipes.  The CF diet is a total learning curve, as it is high fat, high salt, and high energy. It takes a lot of getting used to, and you can sometimes struggle for ideas of how to boost meals.

I am going to add a few of the photos on my blog, but you have a child with CF, head on over and check out some of the comments as well.
I am also going to write a blog post soon about some recipes and tips for preparing meals for CF children, when you also have non-CF children who can’t have the same diet.

Try not to be *too* naughty and cook some of these recipes for yourself. They really aren’t the greatest in nutritional value for the “average” person!

Bella 🙂

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