Tag Archive | medical

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 🙂

 

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 🙂

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 🙂

GIANT decisions

Howdy readers,

Tonight’s subject is a bit of a touchy one. I have been wanting to write about this for a little while, and after a couple of glasses of wine, inhibition have flown out the window, allowing me to write about a bit of a taboo subject.

I am constantly asked one of two questions. “Are you going to have more kids?” or “You aren’t having anymore kids…are you??

My answer is always the same: While I feel like my body has the ability to have one more child (and I would love to have another child, especially another little girl) My husband and I have enough factors against us to not have any more.

The movie the inticed my husband and I to have a large family

The movie the enticed my husband and I to have a large family

My husband and I had always decided to have a big family. Hollywood effected us a bit in this department due to the movie Cheaper by the Dozen. While we knew that no way in hell were we going to have twelve kids, we agreed (for a while) that seven was going to our magic number. This was taking into account “whoops” babies, and the high possibility of twins.

Our first child was planned, although he came along a lot faster than we intended. We were expecting to by trying to conceive for a while….it only took about two months of some-what trying (not exactly trying, but not exactly stopping it either) A few false negative home pregnancy tests left us shocked at our first ultrasound when I was seven week further along in pregnancy than we thought. Though, we were excited. We had recently bought our first home together and were ready to start a family.

But then I fell pregnant again six months later (whilst I was on the pill)….then amazingly, I fell pregnant within seven weeks of giving birth to my daughter! Just a year after giving birth to my middle son, I fell pregnant again (and again, while on the pill!)

Four single births in four years is a damn good effort!! But this is not the reason why my husband and I have decided not to continue on to our goal of seven children.

As you all know, my eldest two have significant development delay. It is something that seems to run in my family, with other family members that have had development issues as well. But most significantly, our youngest son has cystic fibrosis. If you have listened to me ramble on enough, you would know it is a genetic condition that has to come from both parents. This is the main (and its a very big one!) reason why we aren’t having any more children.
We have had such a good run with my youngest son.After he was diagnosed,  I was expecting to be constantly in and out of hospital. We have been incredibly lucky to have only had two CF related hospitalizations (one other was due to a bad case of tonsillitis)

What if we aren’t so lucky with the next child? What if that child is very sickly and has a lower quality of life? Since two CF people aren’t meant to be in close proximity of each other due to a high risk of cross-contamination….what if the new baby (if it had CF) makes my youngest son even more sick. Since we have already had run-in’s with CF-super bugs, Pseudomonas, what if my youngest son makes the new baby very sick?
Development delay is so predominant in our little herd, what if the next baby has issues as well? That would be another strain on the family. To be constantly one step forward, two steps back. It’s hard enough already!

These are all very important factors my husband and I have discussed about a lot since my youngest was diagnosed. Please do not judge us, but we have decided that should I fall pregnant again (since contraception quite obviously doesn’t agree with me) we would undergo an amniocentesis( or whatever test they do for this sort of thing) and if test results come back positive for CF, we would terminate. I know it would be an exceptionally hard decision for my to make, and will create a lot of emotional turmoil….but it would be the best thing for our family in the long run.

However, we have been blessed with four children already. It was easy for us to be able to say “NO MORE” (even if my biological clock is still ticking for one more…I know it isn’t the right thing to do for us) It was our fourth child that was diagnosed with a chronic medical condition.

But what if it was your first child, or even your second…and you wanted more? Or if you met a new partner, who was also a carrier, and you wanted to have more children with that person? These are the people I feel for as they have so many emotional, and moral, questions to ask themselves.

To quote someone who I spoke with about this issue a while ago….the following questions are the sort of thing that come to mind (and I am just using CF as an example here. Any medical condition can be placed here):

Do you or don't you?

Do you or don’t you?

*What are the issues of having more children with CF? (eg. financially, mentally/emotionally, physically) especially when there is a 1 in 4 chance. (Or if you have CF yourself, and your partner is a carrier, you have a 75% chance of having a CF child)

*Do you have kids knowingly that you risk creating a child that will suffer all its life?

*Do you conceive, then terminate if it is discovered it will have CF? Then does that diminish the value of life for those who already have CF?

* If you go through IVF and discard the embryos that have CF, does that make it any different to an abortion?

* If you already have CF and your partner is a carrier, will you be able to care for the child when you are sick? Do you take the chance knowing it will be a huge toll on your body (as a female with CF)? Do you have children knowing the risk that there is a chance you may die young?

There is no right or wrong answer to any of these questions. The love for family can overcome all of these issues, but then again, it might be too much than you can deal with. Don’t ever feel pressured into such a big decision. It all comes down to what is best for YOUR family!!

I hope I have given you some food for thought.

Bella 🙂

****EXTRA NOTES****

This post is not about trying to stop people from having children, but more to bring attention to the thought process that plagues some people about extending their family when they know a medical condition is possible.

I know this is a bit of a controversial subject, as it touches on pregnancy terminations, so while comments are encouraged, I will delete any nasty ones!

Insatiable

From a very young age, my daughter has had an insatiable appetite. I’m not talking about the ability to eat large meals. All of my children are big eaters.

No, my daughter takes it to the next level.

It started when she was about ten months old. She would crawl up to our pantry, open the door and eat whatever she could reach. At that stage she was only tall enough to grab from the bottom two shelves, which is where all my baking supplies are kept. So she was happy enough to sit and eat fistfuls of flour!

Lock #1

So being the conscientious parents we are, we put a child lock on the door, up the top. One of those little lever-types that you push down once it’s opened a fraction before you can open it fully.

Time went on, more children were born, earth-shattering diagnoses were made (CF and GDD) and the problem went ignored.

When she got to the age of about four years old, my youngest was crawling around, causing havoc with all cupboards he could find. Our house became Fort Knox, locks on absolutely everything (something we never had to do with the other children)

It was during this time that we realised exactly how big of a problem we had on our hands.

Our daughter would eat anything that was edible…even those that weren’t! I have caught her eating rotten food out of the bin. We had a George Foreman Health Grill (which has now been disposed of) and she would eat the grease out of the grease trap, and I’m not talking just a little bit, no…I am talking about three-quarters of a full container gone! Every day we would walk past where it permanently sat on our kitchen bench to find most of the contents of the grease trap missing.

Then there was the shopping trips. I would have to frisk my daughter before we left the store, often finding Chuppa Chups or small lolly bags in her pockets. The cashiers would giggle, not knowing how much of an issue it really was. I wasnt able to go into the fresh food section of grocery stores for a long time because my daughter considered it an open smorgasboard. It was difficult at times to find time to be able to go shopping “kid-free” to buy fruit and vege.

Once we got home with shopping, so many times while putting the groceries away, I would think “I’m sure I bought some biscuits (for example) for the school lunch boxes. Oh well, I obviously didn’t pull them off the shelf!”, only to find a few days later that the product in question was hidden in those little pouch compartments on the back of seats in the car, the biscuits eaten of course! This prompted a change around in our car of where kids sat so that she didn’t have anywhere to hide food wherever she sat. She is not allowed to sit next to shopping bags on the way home now.

Once the temptation to steal was removed from the car rides, she upped her cause at home. We started finding that she was stealing and hoarding food around the house. I would have to check her numerous hiding places several times a day. Under beds, in toy boxes, behind television units, in her wardrobe, even hiding in highly visible places like in amongst my husband’s numerous baseball trophies! The situation was becoming out of control!

Child lock #2

 

We realised, that although we had that lock on our pantry, her hand was still small enough to fit into the small gap before you push down the lock up top. The time had now come for a second lock on the pantry. This time, one that wraps around the door so she couldn’t get that gap open.

This helped stop the hoarding considerably. It still happens occasionally.

But if anything is left on the kitchen bench, you can guarantee that she will be into it. Nothing gets left on the kitchen benches anymore. I have just discovered in the last couple of days that I am not going to be able to leave my sugar/tea/coffee canisters on the bench anymore, as its beginning to look like she is hooking in to them as well.

If there is a spill on the kitchen bench that I havent wiped up straight away, she will be right there when my back is turned, using her fingers to lick it up. You just hope to God that it is an edible liquid, not chemicals!

My daughter is by no means overweight. She is well in proportion for her age, but if we let her eat the way she wants to eat, she would definitely be.

A lot of people thought we were over-exaggerating the issue, until they experienced it themselves. My mother was one who kinda felt this way, until she found a hoarding hiding spot at her business. Her school didn’t realise it was an issue until I brought it up towards the end of the year. After a couple of incidents there, it made them wonder how many times she may have had an opporunity throughout the year that they missed.

The balanced diet

When we found out that she had tested equivocal on her CF sweat test, there were a few of us who thought that there was a possibility that her eating habits were CF related. However, doctors were relatively confident that it was not CF related, that is was behavioural/psychological (this has recently been confirmed by the CF team, that she definitely does not have cystic fibrosis) About eighteen months ago, we saw a local dietician. We gave her a list of my daughter’s eating habits over a couple of days (well…the food that we knew about) who said she has a very balanced diet. But when she heard that my youngest son has CF and that my daughter was testing as a “maybe” at that stage, she got a bit excited, and told me that we needed to boost her meals with fats like we do with my son who does have the diagnosis. I walked away from the appointment very dubious, so I called our CF team, who were shocked and said under no certain circumstances are we to feed her the CF diet as we will make her sick! This is exactly what we were thinking, so it was a sigh of relief to hear it from the experts. The CF team said that they will deal with her diet until a diagnosis (good or bad) is reached.

We have been stuck in between a rock and hard place with this. Since the equivocal result, the CF team were saying “Not CF related, not to do with us” (even though they are helping us out now) and local psychologists have been saying “Well, it could be CF related, so we can’t deal with her yet.” But since the doctors have said no CF, but still has respiratory issues, they are working out referrals for us to see child psychologists locally. So I will let you know how that goes.

It has been suggested by a few people (non medical) that she may have the eating disorder, Prader-Willi Syndrome. I brought it up to our pediatrician (have I mentioned that I don’t like her??) who said, off-handedly, that she doesn’t show enough criteria for it. I don’t even know what the criteria is, except the overwhelming desire to eat…and eat…and eat.

I’m hoping to get in to see a child psychologist soon and get some answers. I’m worried about when she starts pre-primary in a few weeks. I don’t want her stealing other children’s lunches, nor do I want her to be this notorious child who is rummaging through bins while everyone else is in the playground. Thankfully, she will have the same teacher that my eldest son had when he was in pre-primary. She is a “no-nonsense” teacher, who will take my concerns seriously and will keep an eye out for us.

I will let you know how we go, but I would be interested to hear from anyone out there who is going through a similar situation!

Bella 🙂

 

Dig deep

It’s that time of year again.

It is when celebrities from around the country (even the globe) fly into Perth, Western Australia to hold a non-stop, 25 hour television presentation where they answer phones, put on acts, and read out pledges. This is all in the bid to raise as much money as possible towards Princess Margaret Hospital for Children.

This amazing event is called Telethon.

It was started in 1968 to help raise money for medical research, expensive medical equipment and make life  more fun for those sick children in hospital. Since then, it has grown, with businesses all over the country raising and donating money. Houses are built, then auctioned, with all proceeds going towards the grand total. Auctions are created in the expectation of donations.

These days, if you call up, you have a high chance of speaking to one of your favourite Aussie celebrities. They will do almost anything to help pull your money in. They sing, they will dance…you may even get a quick strip show from some of the males!! They even give opportunities to various unknown acts, young and old, to showcase their talents on live t.v.

Its amazing at the generosity of people. When they started in 1968, they raised $104, 829 (a lot of money then) and last year there was a record of about $12 million!!!

I see personally how well this money gets used. I wish we didn’t have to, but I am glad to see how the money is spent and how much it benefits W.A families.

So I am writing about this today to urge everyone to donate! I don’t care if you aren’t even in Western Australia!!

1300 737 507- CALL NOW!!!!! Or even check out their Facebook page

I certainly am!

Bella 🙂