Tag Archive | child

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 ūüôā

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 ūüôā

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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 ūüôā

 

We are home…again!

I seem to get a lot of people who think Albany is in nothern WA...so here is a map!

We are home again from yet another trek to Princess Margaret Hospital for Children.

The young one had to have a follow-up bronchoscopy to make sure we have eradicated the Pseudomonas from when he was hospitalised with them back in August.

We left Wednesday morning on the 450km trip to Perth to be at the hospital for specialist appointments that afternoon.

When we arrived, we found clinic to be very quiet. Turned out the respiratory doctor we were due to see was away on maternity leave, and the replacement doctor was off sick, so they had cancelled respiratory appointments. But since we (and one other patient) had travelled considerable distance, they kept our appointments, and found us another respiratory doctor that was floating around.

You would think that since there was only a couple of us waiting for appointments, that we would be over and done with fairly quickly…but no. It took the usual amount of time and we didn’t walk out of the hospital until nearly 5pm. But back to the main story…

My son’s lungs apparently sound pretty good, which is good to hear¬†considering he had a nasty cough that was starting to worry me!) but that is what they said when they discovered Pseudomonas¬†the first time, so I’m¬†not holding any stock in that assessment. But due to that cough, he has to start on Tobramycin¬†nebulizers¬†now that the bronchoscopy¬†is finished and we are home (he isn’t allowed to have nebulizer meds¬†for four weeks before a bronchoscopy¬†as the drugs can affect the results) But everything basically rides on the results from the bronc.

The doctor has also agreed to put our daughter on six monthly visits now (YAAAAY) They are extremely confident now that she does not have CF, but because of her history of chronic coughs (she gets croup at least every one to two months, her latest bout of croup lasted about five weeks) they want to keep an eye on her for a couple of years. They are considering the possibility that she may have weak lung/throat muscles (something she should outgrow in the next few years) and that is why she snores while sleeping, and breathes so heavily when awake. We havent been able to get a result from a lung function test from her, but hopefully the next time she does one, she will be able to do it properly and can get reassessed then. They have also said that they will give us some help with her worrying eating habits (but that is a long subject suitable for another blog post) which is a relief.

Vitamin D...main source? The sun...

Back to my son though. Once finished with the respiratory doctor, we saw the gastroentologists. At the last clinic visit, my son had to have some blood work done to check his vitamin levels. It turns out he is very deficient¬†in vitamin D, enough so that a “bit of time in the sun” wont be enough, and he has been prescribed a new medication, Cholecalciferol¬†(or Bio-Logical Vitamin D3), to help boost levels. He will have to have blood work again in six months to see how his levels are going then.

After that, we went on to see the dietician. They were very happy to see that his weight has improved greatly, as the little porker has put on nearly a kilogram in the last three months!! But they had a little bit more “bad” news (I guess you could call it that), my son is also anaemic. Thankfully, he is only slightly anaemic. They aren’t¬†worried enough to put him on iron tablets, but the main reason for that is because they are worried about the constipation¬†side effect of the tablets. It’s a bit of a surprise that he is anaemic as he absolutely loves¬†his meat. We can only try to add more leafy green veggies¬†and eggs to his diet I guess. The dietician did say that it could be due to the fact that he has a dairy protein intolerance, as anaemia¬†is something they see in people who¬†don’t¬†consume enough (or none at all)¬†dairy. But they will keep an eye on it and will give him tablets when/if they become concerned.

Doesn't look like much fun, does it? ūüė¶

A couple of days later, on Friday, the young on went in for his follow-up¬†bronchoscopy. We still don’t¬†know results yet, and we weren’t really given any indications of what his lungs looked like. We were kind of busy afterwards dealing with the aftermath of the anesthesia. Apparently the procedure didn’t¬†go quite to plan, it sounds like he kept somewhat waking, or moving, during the procedure. He also didn’t¬†wake very well, and especially didn’t like it when the nurses came near him. As only one parent can go in to a child in the first stage of recovery, my husband went this time. I could hear my son screaming in the corridor. I could tell he was having a rough time coming to again. When they walked out to go into second stage recovery, I noticed blood over my husband and son. Yep, my son has ripped the canula out of his hand and blood went squirting everywhere, apparently. He lost a fair bit of blood, but is doing ok.

Thankfully, it didn’t take long for him to be¬†“awake” enough for us to leave, but we still had a rough night that night as he suffered spiking fevers and incoherence, something he seems to go through after having anesthesia these days. Two days on, his appetite is still suffering a bit, but he is happy and playful again, though nap times are probably a bit longer than usual still.

For now, we wait on the phone call from the CF team with the results from his bronchoscopy. I have to admit, I’m¬†not confident that we have gotten rid of the Pseudomonas, but I’m trying not to think about it for now. At least we have plans in place should he have to back to hospital to have intravenous drugs for two weeks again.

Please keep your fingers crossed for us for good results!

Bella ūüôā