Tag Archive | doctor

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 🙂

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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.

Are you ready for a long story??

As promised, here is the update on my daughter.

I have mentioned before that she was diagnosed with Global Development Delay and had serious food compulsion

In January, two weeks before school started, we saw our pediatrician, who after some tests, said my daughter had caught up significantly in development and could no longer be classed as GDD anymore, and was discharged.
At the time, I was ecstatic! It felt like a huge achievement…and it was (for a while…but I digress from the series of events)

The lack of diagnosis meant she was no longer eligible to attend her Early Intervention Program anymore, but after talking with the school’s principal, and the head teacher calling me after she heard the news, I was left confident that my daughter would be okay in mainstream schooling.
A couple of days before school started, I met with her new teacher (who has previously taught my eldest son who also has GDD) and made sure she was aware of the food compulsion and all the drama we have had in the past with her development, and her previous schooling. Being that she knows the in’s and out’s of our family drama (CF, GDD, work, army…etc) I was relieved to have such an awesome teacher for my daughter, and trust her completely.

Respiratory check ups are still happening

Around February of this year, the CF team officially said that my daughter does NOT have cystic fibrosis, after deliberating over multiple test results for almost two years. She is a genetic carrier, and has floppy airways…but no CF.
When I told the respiratory doctor about the food compulsion, and all the drama we had with the local dietician and pediatrician, he was immediately concerned. When I told mentioned that it was suggested to me that she might have Prader Willi Syndrome, he said it was his first thought too. I just about leaped over the desk to kiss him for taking me seriously!!
He called in the CF clinic nurse between them they organised referrals for my daughter to see a child psychologist and an endocrinologist.
After being previously being told “She isn’t fat, you have nothing to worry about” it was so nice to be taken seriously. Having two locks on your pantry, a lock on your fridge, “yummy” foods (biscuits and lunchbox items) out in our garage under lock and key, checking hiding spots daily….well…it isnt normal. I think I had a lot to worry about. The weight lifted off me when I had someone (and that someone being a medical professional) agree that it was not normal.

My daughter was marked as “urgent” on her psychologist referral, and managed to get in within four months…not bad considering there was over a year waiting list!! Apparently, there was a bit of arguing between the staff of whether or not for the psych to take on a child that young….but decided to give us a chance and see if it was serious enough.
The doctor was awesome. Within ten minutes, he realised that there was a legitimate problem. Ten minutes after that, my daughter was given the Global Development Delay diagnosis back (by this time, my daughter was starting to struggle immensely with mainstream schooling and our awesome teacher, with her wealth of knowledge and experience,  was even having a hard time dealing with her) I jumped for joy…and again…nearly leaped over the desk to hug the doctor! (hmm…starting a pattern here aren’t I?)

The psychologist agree that Prader Willi Syndrome (PWS) is a high contender for a diagnosis, but obviously, he can’t say anything further until she had a full metabolic screening and genetic scan (since PWS is an abnormality on the 15th chromosome) to rule out anything physical.

After leaving the appointment, I called the Early Intervention Centre, to say that my daughter had a diagnosis again, and we would like to return to finish off the year with some intensive therapy in their classroom, part-time. They told me that a psychologist can’t make a diagnosis of GDD, it had to come from a pediatrician. I was gutted. After talking to our school psychologist, she asked who it was we were seeing. After hearing his name, she said to ignore what had I just been told, this guy was qualified to make a diagnosis as he was also trained as a doctor. (YAY! Insert fist pumping here) 
So I called back the Early Intervention Centre to tell them the update, that she WAS eligible to join the program again. Unfortunately, because the program is so exclusive, autism takes  higher priority on their student intake, and there were two new students with autism due to start. There were no more spots left available (Insert gutted feeling here…again)

My daughter still needs a lot of extra attention at school

So we are still plodding along in mainstream schooling, but the school is actually trying their best to hep us instead of dragging their heels and twiddling their thumbs…especially when it comes to trying to find aid funding to give her extra attention in the classroom.

We have since seen the psychologist again, and autism was briefly considered…which completely knocked me off my feet. I hadn’t ever considered it for my daughter…my eldest son? Yes. but never my daughter.
The idea was quickly discarded though as while she shows some characteristics of autism, there is nowhere near enough “red flags” to warrant further investigation. Though, it is not uncommon for PWS patients to have some autistic traits.

To help with my daughter’s mood instability, she has temporarily been diagnosed with ADHD so that she can be medicated. The doctor doesn’t think she actually has ADHD, just whatever she does have has ADHD tendancies….but he had to give her a label in order to be able to give her medication (it was either that, or bipolar…and neither one of us felt comfortable giving that label to a six-year-old!!)
She is only on a low dosage, and it is mainly to level her moods while she is at school. We are up for review soon and hopefully by then, we have seen the endocrinologist and have some blood results to give us further answers. However, the tablets are making a massive difference to her behaviour and moods. It has even helped her food compulsion a bit!!

This psychologist is awesome. He has told me that he is willing to tweak the system in order to get her an aid at school, as he feels that she absolutely HAS to have one. (insert relieved feeling here)

Still no answers yet

I have to admit, I am nervous as to how the blood test come out. If they tested negative to Prader Willi Syndrome…then we are back at square one of “WHAT IS THIS?”

In the meantime, she is still seeing the respiratory specialists in Perth for her floppy airways. Apparently if she doesn’t outgrow it by the time she is about 8yrs old, she may require surgery. But they aren’t too worried about her lungs at this point as we (and I quote directly) “have bigger fish to fry”
But if it wasnt for the respiratory team taking me seriously…I honestly don’t know where my daughter would be today!!

So there is the long-winded story that I have been promising for months. There is still a lot to go…but at least the ball is rolling!

 

I just want answers….
Bella 🙂

The “MacFarlane” family story- part 1

Here is another diagnosis story for you all.
I met Helen MacFarlane on Facebook little more than a week ago through Carly Mara. She has happily shared her own family’s diagnosis story as another guest blogger. Again, we are going to break it up in parts. Here is part one…

I hope you enjoy this powerful story as much as I have!

Bella 🙂

On every shooting star I use to wish for a child. And when I had my first-born, Christian……I felt that I only wanted one as I couldn’t possibly have enough love to love another….

And then as I reached my late 30’s, we decided that maybe we had room for one more. We both entered childhood with trepidation, both of us having incredible dysfunction of an abusive nature as children and not wanting to relive the pain of that again, by having our own. Pleasure and pain…….

Falling pregnant with the first child was slow, falling pregnant with my second was just as slow with a painful miscarriage in between. Again I wished on my stars that I would have a child, a little girl, a doll to dress up….I prayed and I wished and suddenly, amidst the familiar biliousness, I was holding up a stick with pee on it, exploding the words…”Im pregnant!!!!” to a surprised husband and a pleased, but slightly embarrassed neighbour.

My pregnancy this time was strange. Can I call it that?…..I tended to spend long periods of time in my pyjamas, I sulked and I was covered head to toe in a very nasty and raised, lumpy rash. I have never seen anything like it…it was angry and weepy and itched so bad, despite my attempts at an “organic” pregnancy, I was medicated to prevent scratching myself to death and bleeding in my sleep.

We decided with this pregnancy that we would also find out the sex of our child and also name the child early, so that “jelly bean” would have an identity. We soon discovered that we were having a girl and we decided to call her Asha Rose. Asha – because I love anything Indian and her name means “hope” in Sanskrit and “Rose” for my obsession with roses…little did we know how symbolic her name was to be…

My labour was intense and very quick. I discovered during the 1/2 hour drive through a very dark country road why the bar above your head in a 4WD is called a “Jesus Bar” I also learnt that just because you walk in reverse into a labour room, doesn’t mean you automatically get an epidural!!!

So….there I was….delivering a baby…drug free….with a husband who clearly stated earlier in the pregnancy…and I quote…”I do not want to go down south”…and I don’t mean, on holiday……we were already living “down South”!!!!

The beautiful baby, Asha

The beautiful baby, Asha

I recall afterwards feeling very empowered. I was crying, as you do, after the labour..lamenting to the midwife…that I had been known as “stupid” for so long, by my stepfather…and I couldn’t believe that I did THIS amazing thing and that no body could take that away from me…I cried because I did something right and I was very proud, of myself….my reward was Asha.

I recall as well sitting upwards, cross-legged on the hospital bed, with Asha on my lap and I was admiring how amazing she looked, that this baby had been gifted to us. I kissed her face a million times, almost to reassure myself that I wasnt having a dream and it was then that I noticed she tasted salty. I looked out to the window across at the beautiful rose garden and admired the roses…..and didnt give that a second thought. I was amazed that she was sweaty and it was 2 degrees outside!!.

When I handed her over to the Nurses for the Guthrie test, I didn’t give this a second thought either. I had the air of confidence of a second time Mum. “Just dont drop her on her head”I probably thought to myself as I was grateful for the cup of tea and Scotch finger biscuit left by the Orderly.

She came home wrapped in a beautiful purple wrap. She was given the appropriate attention that a newborn expects, food, warmth, shelter and bundles of love. I was casual and confident this time. I breastfed her whilst I checked the mail, watered the plants, answering the phone….I was marvelling at how easy she was…and I remember bragging to someone that this baby being second WAS easy….but I was very wary…..this was too perfect, something doesn’t feel right. I even voiced my concerns to a close girlfriend. She reassured me that I was worrying with no concern and to enjoy this special time. I continued on, with this gut feeling.

Then Asha developed a wheeze that wouldn’t go away and would scream at 2pm every afternoon and lift her legs to her chest. After she filled her nappy, the pain seemed to subside. I did mention to my clinic nurse who made notes in the “yellow book” and then she talked about colic and wind pain. The wheeze? Perhaps a cold?

Then we got the phone call. Asha was 5 weeks old. Our Doctor in Bridgetown rang us at home and I answered. He was using words like ..disease….no cure….Cystic Fibrosis…PMH….team of specialists….bed waiting……physiotherapy….normal lives….management. And then, at that exact moment….I actually felt my heart break……I felt “let go” by God and I felt like I was floating…in a bad dream. I was crying…..uncontrollably…..wet…..heaving…cannot breathe….oh my God…….Why?…wanting to vomit…..wanting to scream…needing…my Mum….vomit…..no breath….And..Im doing this, in front of my 4-year-old and my husband. Very very private feelings and emotions…..in public view. Once I had composed myself and comforted my husband, we silently went through the motions of heading up to Perth the next day. My son, Christian came over to me as I had my head buried in my arms, he touched me on the shoulder and sang the Good Night Song that GWN play every night. Fat Cat jumps into a bed and a song is played, poxy one…to the tunes of a keyboard… He sang this song like an angel….and then gently said to me…”I sang this song to you, to cheer you up….I love you”……It was his way of providing me with a safe place to hide…..I hid in his flannelette arms and cried some more….

We drove 5 hours to Perth the very next day and once settled into our room at PMH , the onslaught of specialists attacked our very private lives and opened the guitar case of emotions and plucked at every string. We were sitting on the bed dumbstruck at a new vocabulary with words such as enzymes….physio…percussion….malabsorption. I should have been listening but instead I’m looking at them blankly thinking “Why me? Why us?…….I ate the right foods…..I did good deeds……Ive already suffered at the hands of others……why are we being punished???” I met nurses Liz and Charlotte and cried in front of them…..Dr Wilson and cried solidly in front of him too. My emotions were raw and I felt incredibly vulnerable.

To be continued…

Things I have learned since having children

All mother’s learn “tricks of the trade” as time goes on. I have called on the help of some of my mummy friends to come up with some little ideas for new, first time mums.

Keep a change of clothes for yourself  (and bub) in the car at all times.

Spares never go astray

I have lost track of how many times I had to run into  a clothing store when I was in town to buy a shirt because of one of the three embarrassing baby “P’s” (poop, pee or puke) Then there is the worry of breast milk leakage…yup…I have had the embarrassment of a wet circle around my chest in public, which resulted in bub being carried until a change of clothes or calling quits and heading home earlier than anticipated.

I have had some parents say that they forgot to bring baby clothes with them at some stage. Its seems obvious to take baby clothes in your change bag, but it can be forgotten with the “baby brain” we all suffer in those first few months (or years….)

 

Essentials for every handbag: wipes, band aids and stickers!

I used to (and still do!) keep a pack of wipes in our change bag, handbag (since the change bag didn’t come everywhere), and the glove compartment of the car. No matter where you are, or what you are doing, you should never get caught out, whether it’s a nappy change or wiping up sticky messes after ice cream at MacDonald’s.

For all scrapes and bruises

Band aids are always handy because they make everything better! A stubbed toe can feel better with a band aid, but then there also times when there may be blisters caused by shoes, or scraped knees falling over in car parks.

Don’t forget stickers, because any child can be bribed with the promise of stickers. I quite often use this piece of bribery to get the kids away from those blasted rides (you know the ones, the cars that bounce up and down, or trains that go round and round) that are always parked out the front of shops to drain parents of any coins that might be hiding in the depths of their purses.

Find a GP who will listen to you.

A doctor you trust is essential

Good doctors can be hard to come by. Find one who will take you seriously if you take your child in when your gut is telling you that they are ill. No-one knows a child better than its own mother. But you also want a doctor that isn’t afraid to tell you that the sniffles are just the sniffles and you need to relax. It’s a little contradictory, but you need to be able to trust your doctor to take you seriously and tell you the truth.

 

 

Sleep whenever you get the opportunity.

Sleep when the baby sleeps. No-one cares about the housework, catch up on it later. A dirty house is better than an axe-weilding maniac! Those who pass judgement probably havent had kids and aren’t worth the time…they will soon learn.

Sleep is your friend!

Call on family members. I bet they are more than willing to help out (Well…people going ga-ga over a baby can be helpful at times!)

Sleep as much as you can in hospital, it means that you will have more energy to deal with things when you get home, because I’m warning you now, the first night home is generally a nightmare (though it usually settles very quickly)

Depression isn’t weakness.

Never be afraid to ask for help!!

It happens to the best of us. It doesn’t mean that you don’t love your baby. It doesn’t mean that you aren’t doing a good job. Parenting is hard. Find someone who you can vent to…or write a blog (it certainly helps me!) and never be afraid to ask for help. It is normal for your moods to be all over the place for a few weeks after birth while your hormones settle. But if the feelings of sadness or hopelessness (amongst other symptoms) continue, see your doctor. Check out www.beyondblue.org.au for more information.

Don’t forget, fathers can get postnatal depression too!

No book has all the answers.

There is no such thing as a baby "Bible"

Some parents have huge expectations of how their baby is going to be once born. They aren’t going to have pacifier at all, organic cloth nappies only, and of course they are going to sleep straight through the night instantly. It’s these sort of people who experienced parents sit back and look at, giggling inside while thinking “Well you’re in for a wake up call!” I have met expecting mothers who have found a certain book and swear blind that they are going to follow every word and their baby will be perfect, only to be dismayed when their baby had other ideas.

Allow your child to have some time to work out a bit of a routine. You can slowly guide them towards one, but don’t expect instant results. If you make a decision on how to do something, then stick by your decision. Don’t allow yourself to get bullied by others to do things their way (for example, the breast vs. bottle debate I touched on recently) What works for others may not work for your family. Allow time to figure it out!

Run fast, run far!Now finally, I asked my husband for some tips for upcoming first-time dads, and what do you think his little pearl of wisdom was??

 “RUN!!!!”