Tag Archive | doctors

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 🙂


Latest health update

Hi all!

We have been home from our latest check-up visit in Perth for a week now, but I have only just now had a chance to give an update.

Sweat test device

We took our middle son, who is four and a half years old, with us for his sweat test to see if he has cystic fibrosis as well. He was one of our kids that we put a question mark over when we found out our youngest had CF. However, due to the long process we went through with our daughter’s diagnosis (or lack thereof) he was put on the back burner. However, I am very pleased to announce that his sweat test came back within normal levels. He does not have CF 🙂

We do not know yet if he is a carrier. He has to make the decision to be tested for that when he is older. Trust me when I say that we will be strongly advising him (along with our eldest son, whose sweat test also came back negative) to undergo that test!

Back to my CF son….

The respiratory doctors were basically “Thanks for travelling 450km. Everything is fine, we will see you in three months!” I guess you can say that is annoying, due to the travel, but its the best outcome you can hope for!

The dietician would like us to write a diary of his food intake for about a week before we return for the next visit so they can see how we can tweak his diet to boost his iron intake (as he is slightly iron deficient) I’m not sure how else we can do this without medication as he is an absolute carnivore! We try leafy green vegetables, but good luck getting those sort of foods into a two-year old! But they want to retest his iron levels in three months.

My son's daily dose of medications

The gastroenterologist was concerned that my son was at his maximum amount of enzyme tablets (pills to help digest food) a day, yet was still pooping too much. So he has been prescribed another medication, Losec, to help the enzymes break down. They will see how he is going at the next clinic.

We found an instant result with the new tablets. They almost work too well. But we can reassess later on. But for now, at least my house doesn’t stink as bad! But the poor little blighter is now on six different medications a day (that’s just when he isn’t sick!)

Overall, it was a successful trip for my youngest son. But, the biggest thing that had me walking out of the hospital smiling, was the fact that the doctors have taken me very seriously in regards to my daughter’s eating habits. They have agreed that we aren’t very well supported back home, so they going to class her as “CF” so that we can see their child psychologists on their team. Since she is coming with us again on our next visit, they are setting up an endocrinology appointment to rule out anything physical, since no psychologist will ever take us seriously without having ruled that out first. I just about kissed the doctor when I realised he was taking my concerns seriously, and was just as concerned as we are. A weight got lifted off my shoulders when I mentioned to him that it had been suggested to me in the past that she may have Prader Willi Syndrome, and he said it was one of his first thoughts of possibilities, but we have to do the endocrinology first.

It was the first time ever that I walked out of the hospital happy and relieved!

There will be more news on my son at the next visit in three months time when he has a heap of blood work done to test all his levels. So I will update you all again then!

Bella 🙂

GDD update

Sorry for being so quiet lately!! But I’m sure you can imagine it gets pretty busy around here at times.

I have mentioned before that my eldest son has Global Development Delay (GDD). He was diagnosed with this about two and a half years ago, when he was around 4 years old.

We probably always knew that there was something “wrong” with him in the early years, but we kinda stuck our head in the sand with the thought “It’s all good. He will catch up in time!” But it was when he started kindergarten that the truth hit home.

We chose a very small private school, which my niece also attends and is flourishing. He was not toilet trained, but they were willing to work with us about that, well, they were at first. After that first day of school, one half day, the teacher came out to me when I was picking him up from, took me aside and said that we needed to get him in to see a speech therapist, occupational therapist,  and pediatrician urgently. They informed me that it was in his best interest not to return back to kindy until he was a bit more “sorted” (for lack of a better term) I was in a bit of shock, but I knew she was right. I spent the rest of the afternoon in tears though.

So we pulled him out for the term, hoping to at least get him toilet trained to send him back.  However, a term turned into a semester, and a semester turned into a year.

Over the next couple of days, I sat down and wrote a list of things that didn’t quite add up. I wrote the little things like how he was obsessed with tags on soft toys (he would wrap them around his fingers while sucking his thumb. It was his comforter. Cut the tag off and he wouldn’t touch the toy again) to the major problems like his daily multiple violent meltdowns that could last for hours, significant speech delay, and the toilet training (or lack thereof)

I was surprised when I was finished that I had written three pages, back to front!

Looking over it all, a little voice in my head said “It sounds like autism!”  I did my research and found that I could tick off about 90% of the usual signs of Autism Spectrum Disorder. I felt, and still feel, that he had Asperger’s Syndrome, a form of autism on the spectrum. I havent mentioned everything that was on the list, so you may look and that and think “Nah, doubt it!”

As our town doesn’t have a resident pediatrician, we have one that flies into town every few months, and there is a long waiting list.  So in the meantime, he started speech therapy and occupational therapy. We enrolled him in a daycare with a kindy program so that he could be around children his own age more often.

Last year, he started pre-primary. With the diagnosis of GDD, he was eligible for an education assistant during class. As he was (is) a flight risk, she would hover in the playground as well.

I have no idea where we would be if it wasnt for her!! She is an absolute star. She has the “My way, or no way!” attitude, which my son really responds to. Of course they batted heads along the way, but she was a huge helping factor in getting toilet trained during the day (which finally occurred about halfway through last year), she helped to deal with his meltdowns and guided him through his school work. His teachers were absolute stars, they also had that “my way” attitude. I’m hoping to be able to get the same teachers for my daughter when she starts pre-primary next year.

He has had massive improvements this year since starting grade one. He has less meltdowns, and is slowly getting more conscious of social standards, so he is making friends easily. The kids in his class are amazing. I would have expected some bullying, but they are completely aware of his limitations, and realise he doesn’t always understand. They help to guide him towards the right outcomes.

But we recently had some fantastic news! I had a phone call from his occupational therapist who said she was 100% satisfied with his accomplishments in the last six months, and feels comfortable discharging him from OT. This is a major achievement. He still has a long way to go, but she felt that he would be able to accomplish this on his own (with help from teachers and his aid of course) I was jumping for joy after this phone call!

We have had a long battle over the last few years getting our son to this point. During his autism assessment, it was decided that while he shows autistic traits, it wasnt enough to put him on the spectrum. This was incredibly frustrating when I see/hear about other children who have the diagnosis, and show the same characteristics as my son! It wasnt helped by the fact that the assessors said had they seen him 6-12mths beforehand (as we were on the waiting list for the assessment for almost a year) he absolutely would have been diagnosed with ASD. Can you imagine hearing that? So we missed out on heaps of funding he could have had to help his learning at school. That is the most frustrating part.

For the moment, we will take this discharge as a massive positive…which it is of course!

Wish him luck fo his development in the future, and I will keep you posted of his progress!!

Bella 🙂