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Angels in disguise

All parents, especially mothers, have a few fears when their children start school. Will they be able to make new friends? Will they be able to handle the school work? Will they cope?
All these fears are heightened when you have a child with special needs.

It has been four years since my eldest son, Aaron, first walked through the school room doors.

My eldest son, Aaron, who is now almost 8y/o, This photo was taken at Christmas, 2012

My eldest son, Aaron, who is now almost 8y/o, This photo was taken at Christmas, 2012

Actually, it was the second time. The previous year, we had tried to enroll him in kindergarten at private school. But after one half day, they pointed out all his development issues (I was trying to bury my head in the sand at the time, hoping he would just “catch up” once he was around kids his own age) He spent the entire morning in a violent meltdown, which was extreme and common at that time. When I went to pick him up, the teacher told me, quite abruptly, that we needed to see a speech therapist, an occupational therapist and we needed to see our doctor to get a referral to see a pediatrician, and that they could no longer take him in until he was fully toilet trained, which beforehand, they told me wouldn’t be a problem. (We later pulled him from that school completely)
I drove home that day crying my eyes out. That was when I realised how big of an issue we had on our hands. That is when our battles began (but that is another long story)

I was advised that public schooling was the best option for us, as they get more funding for children with special needs than private schools do.

When he started pre-primary, at a new school, we were armed with the Global Development Delay diagnosis, which made him eligible for an aide until he turned seven years old. There was only enough funding for an aide for one full day, and three half days. His aide, to say the least, was an ANGEL who was good at hiding her wings! She basically toilet trained him (which just was NOT happening at home), set up all the tools to help him settle in and learn, and dealt with his frequent and extreme meltdowns with a level head. She was amazing!

But she is not the inspiration behind this post (though she does deserve a gushing one of her own!) 

No, this post is dedicated to the other students that were in his class that year. They accepted Aaron for who he was, and the dramas that surrounded him, with open arms. They helped to guide him to make correct decisions in social aspects. They would whisper hints to help him with his school work (which was heavily simplified for him due to his learning ability) They would encourage him to join in their lunch-time games, despite the fact he rarely did.
The best thing they did, was that they accepted, without judgement and ridicule.

I know a lot of this happened because the teachers would tell me about it. Unfortunately, because I had three younger children still at home, was working hard to get our cleaning business off the ground (which, really, is unimportant to this story), plus still living in a “bubble world” in terms of my youngest son’s cystic fibrosis diagnosis…I was unable to volunteer as a parent helper in the classroom to witness this more personally.

But there came a day when I did witness this beautiful wonder of these amazingly accepting and helpful children.

Despite not being able to help out in the class room, I still made it to every “Parent Day” and carnival. This particular day, the children were doing an Obstacle-a-thon, which was three laps around an obstacle course in the pre-primary area. The children fundraised through their laps, to raise money for the pre-primary area funds.

Aaron during his Obstacle-a-thon in 2010

Aaron during his Obstacle-a-thon in 2010

I brought along my daughter, Eva (who was four years old at the time, and we were beginning to realise at that time she also had Global Development Delay) and my youngest son, Cameron, who slept in the pram almost the entire time…(Ethan, my middle son was sick at home with my husband that day.)

My daughter joined in on the fun with the other students. After the laps were completed, there was a picnic lunch for parents and students. As we sat, my children had a packed lunchbox ready to devour.
As I dealt with Cameron, who had awoken and wanted a bottle, I looked over and saw that Eva was struggling to open her yoghurt and other sealed goodies. She was becoming a little upset (a reminder, this was around the age that her food compulsion was at its highest peak.) I was just about to put Cameron down and move over to help her, when one of the boys in Aaron’s class, leant over and opened all the food for her. When one of the other student asked something about (the exact words asked escape me now), this particular child replied “It’s ok! It’s Aaron’s sister, and she is just like Aaron!”

“Oh….ok then!” (continues to eat his own lunch)

There were no stares at her behaviour. No sniggers. No rude comments.

Just kind, helpful natures, and an awareness beyond their years.

These boys…no…ALL the children in this class were accepting and willing to bend over backwards to help a fellow student/child to develop and grow in their own way.

I sat back in shock and amazement. I drove home in tears again…happy ones this time…at how lucky my son was to be around such awesome kids. My fears of my special needs son not ever being able to make friends flew out the window! Later on in life, I hope realises how special these friends are/were.

I wish I could say that the rest of his schooling years have been as smooth and accepting as this. Aaron has had his fair share of bullying since starting primary school (and things went downhill, fast, once the funding ran out for his aid…however, that’s another story for another day) However, he has always had a few of the students from his pre-primary year in his classrooms. These students have continued to protect, encourage and nourish Aaron over the last two and a bit years.

To these students, you will probably never know how much love I have for you for being so amazing to my son. You have helped model him into who he is today, whether he will ever realise it or not, and I don’t think you will ever realise what you did for him.

From the bottom of my heart, THANK YOU!! You are truly amazing kids. You will make your parents proud and I am positive you will grow into fine young men and women. Keep up the amazing work!

Bella 🙂

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Constructive advice

I attend a special group every Wednesday morning (well…as often as I can). I wont call it a mother’s group, as men are welcome, and quite often get grandmothers and other care givers attending. This group is a support group of parents and carers of children with special needs, both mental and physical. A vast majority of the ladies who attend have children with autism or Global Development Delay. However, there are a few (including myself) who have those with physical conditions (like cystic fibrosis)

Half the time, we have guest speakers, or certain topics to talk about (the rest is just sitting around having a chat over a cup of coffee). Last week’s topic was “Dealing with people’s reactions to you child’s disability”

I kinda hogged the talking (hey, four kids of disabilities and reactions worth here!!)

But, what do you hate hearing from people in regards to your child’s diagnosis/disability? I recently posed this question on my Facebook fan page, and have had a good response so far. A lot of I can personally relate to.

I can't *wait* to hear how you can do things better, or how you have it harder!

I can’t *wait* to hear how you can do things better, or how you have it harder!

I ask you to add your own pet peeves. Check out the blog post by another mum who attends my support group, who recently wrote about the same thing (and I don’t feel I can write it any better than she has!)

My biggest pet peeve is the “God gave only as much as you can handle”.
I am not a terribly religious person. I class myself as ‘spiritual’. But God has nothing to do with what my family is going through and how we live our day-to-day life. I quite often wonder if He made a misjudgment in my abilities as a mother and just maybe, gave me ‘too much’. My next statement will be controversial, but I struggle to put my faith in something/someone who has apparently made my life very difficult.
Despite the big story I can write behind this comment, I find this statement very unhelpful. Am I just meant to say “Thank you”?
I tend to find myself just smiling and changing conversation.

After we all took turns of what we hated hearing, our support group coordinator then asked “What do you want to hear, then?”

The silence was awkward.

No one could think of anything for a moment. There are so many hurtful and unhelpful comments that get our backs up, but what can you possibly say to a special needs parent that is actually helpful?

One thing we all agreed on, it’s not the “You should do *this*”, it is a simple “Well, what can I do to help?”

If you know someone who has a child with special needs, take a legitimate interest in their struggles, take their lead on how you can help in a constructive way. It may just be the occasional ear for them to vent to. It may be the opportunity to go out for coffee once in a while. It may be a hand with babysitting.

As a young mum, my large circle of friends became smaller once I had a baby. At the age of 19yrs, I was at home looking after a baby. I couldn’t go out to parties as often anymore. Once more children came along, I went out even less. It became full battle strategy mode to go to the shops, let alone out to a friend’s house. The invitations stopped rolling in…

Screw the coffee....bring over a bottle of wine!!!

Screw the coffee….bring over a bottle of wine!!!

Later on, once we realised we had some special needs, that circle of friends got even smaller again. The friends that I have left I am exceptionally grateful for! If they read this, I LOVE YOU GUYS!! They understand that it is hard for me to get out, and if I do go out with kids in tow, it is hard to enjoy myself as I am stressing out, making sure that they aren’t trashing my friend’s house, running riot in the cafe, or playing with something that can make them sick.
These friends take an active interest in my family’s struggles. The biggest help they give me is by saying “Ok, so your kids are home today? I will come to your house for coffee then, instead of going out.” or they actually listen to my kids when they have something to say, and acting like it was the most interesting thing they have ever heard. They treat my kids like actual people.

So leave out the advice of what you think a parent should, or shouldn’t do with their children. Don’t make judgements. Just accept, and ask them what you can do to help.

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!

We’re All in this Together: Blending in Special Medical Needs

I found this blog post by “Close Families”.
I think it deserves a read!
Bella 🙂

Close Families

When one person in the family has an illness, it can sometimes be difficult not to single that person out. We say all the time that we don’t define our son by his disease, but at the same time, there are certain precautions that we do need to take in order to give him the healthy life that he deserves. But how do you do this without singling out the person with the illness? Here are some tips that work for our family, and although our needs are catered to our little guy’s cystic fibrosis, many of these ideas can be helpful for other families who have a loved one with special medical needs.

  • We try to be as matter-of-fact about any changes or special needs as possible. We do our best not to place emotions with our son’s needs in order to prevent him from getting unnecessary sympathy…

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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 🙂

Camaraderie

Being as CF parents can be likened to the military. I know that sounds weird, but let me explain…

If there is a call to arms in the military, men and women everywhere drop what they are doing and rush to help. There is a certain type of friendship and understanding between them. They understand what another is feeling, can relate to their experiences, they trust each other totally. This is called “camaraderie”.

Being a parent to cystic fibrosis is no different. If someone calls out that they are having a bad day, or need help/advice, there are a mass of people who will drop what they are doing to offer their support. Whether it’s a virtual hug online, or a pat on the shoulder saying “There, there.” Everyone nods along when you relate your experiences. They know. They have been there. They have lived it.

I have met many wonderful people since my son’s diagnosis. There are some that I have physically met, and others who have only shared our experiences online, but there is a connection with these people that I struggle to have with people I have known my whole life.

These people are fellow war fighters.

From our experiences, no matter what our background is. We have a common ground that allows us to bond in a way that others cannot. I find myself being able to open up and talk to these people in ways never before. Instantly, I felt like I had known these people my whole life. They know my most inner self like their own best friend. Like being in the military, it can only take first-hand experience to be able to truly understand.

I am thankful for my comrades. Who knows where I would be today with out them. I hope they know exactly how special they are.

Bella 🙂

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 🙂