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Mum shares her story to help other families struggling with their child’s allergy.

Jacinta is a mum of three beautiful children – Ariah 6.5yrs, Lucy 4yrs and Jonathan 2yrs.

After reading the terrible news this week of baby Lucas who died weighing just 9lbs (4kg) after his parents self diagnosed and fed him a gluten-free diet which included quinoa milk, Jacinta contacted us to share her family’s story. She hopes the telling of her journey with extreme allergies will help any other mums who may be wondering about the answer to their child’s health issues.

Jacinta’s middle daughter, Lucy, has a fructose malabsorption and milk protein allergy. Jacinta shares her story here …

“To explain our journey, I need to start at the very beginning.

My daughter Lucy was born 3 days early, so a perfect full term baby, her skin was like an overcooked baby though, so I couldn’t help but think if my dates were wrong, she was born a healthy 7lb 05oz. Perfect size.

She took to breastfeeding like a professional, so unlike my 1st daughter who I struggled with. I thought well this time is going be so much easier without that issue. How I was wrong, as I will explain later. Breastfeeding was about the only easy thing we had. And I breastfeed until she was 15 months old.

We stayed in hospital for five days, as we had chosen to go private, I enjoyed the time with my beautiful baby girl. Family and friends visited and it was a lovely and relaxing time.

My oldest daughter visited her new sister, and enjoyed cuddles. All was perfect, little did I know this was about the only time it was going to be enjoyable for a long time. I had a feeling I couldn’t shake, that something wasn’t right with my baby girl. Later on I was told my family had the same fear as me.

We left hospital on day five, and enjoyed our 1st night at home. Lucy was becoming increasingly more unsettled and crying lots but I thought that was normal as my milk had just come in. So we enjoyed a few days at home with a newborn baby girl.

Day 10 of her life, it was a hot day and we had been busy until 10pm. I noticed Lucy had not been herself all day, not feeding much and very lethargic. I woke her to try and feed her, which she refused and noticed she was running an extremely high temperature of 39.9. We rushed her to hospital.

We arrived at the hospital and were admitted pretty quickly. Lucy had bloods, urine, and a Lumbar puncture done. The doctors were quite worried about her and couldn’t bring her temperature down with Panadol.

The next day I was told they were starting her on antibiotics as it would take a few days to get the test results back. Lucy was still extremely lethargic and struggling to feed.

The next day we got the results of the Lumber puncture, it was positive to viral meningitis. So she needed to be monitored quite closely.

Lucy was slowly improving but they wouldn’t let us go home until she was a little better.

Day four in hospital, we got the results that she also had urinary tract infection. She would need an ultrasound to check everything working right. Day five around lunchtime we were discharged with antibiotics. Lucy was still unwell but was slowly improving.

lucy r lucy 3

She recovered from her infections and I thought life would settle with my girl. She was still becoming increasingly unsettled and if not sleeping, she was crying all the time. So I went to the doctors when she was about 6 weeks old for her immunisations and to ask about reflux.

The doctor agreed and told me to give her Gaviscon before each feed. I found it extremely difficult for a breastfed baby, so really only managed to give a tiny bit.

I was getting on with my life with a toddler and baby but had no idea what was just around the corner.

One day I went on an outing with a friend to the baby expo, I started to breastfeed Lucy in the sling. Although Lucy was still feeding we decided to find some lunch, walked to nearby table and sat down. Lucy took herself off [my breast] and I tried to put her back on but she looked like she had fallen asleep.

I asked a friend to hold her while I sorted lunch for myself and my toddler. As I handed Lucy to her, she said “why  are her lips blue ?”

I said that often happens after breastfeeding. But as I watched her I noticed they were quite blue, then Lucy had blood coming out her nose.

My friend screamed, I grabbed her, put two fingers on her chest, but I have no idea if it did anything. A man who I later found out was a cleaner grabbed her off me and performed CPR on her. Lucy came around and started breathing again and had people everywhere rushing to her aid, as we were at the baby expo, there was nurses that came and offered assistance until the ambulance came, ambulance arrived and they cleared her airways of the blood.

We were rushed to woman’s and children’s hospital. Where we would spend the next week. With Lucy being monitored and lots of tests.


Related story – Malnourished baby dies from gluten-free diet


This day goes over my mind often, and I can’t even begin to explain how close we came to losing Lucy this day. We still have no idea how long she had stopped breathing for but it was at least a few minutes. I will say I am thankful to God we were in a public place, I was supposed be at home on my own with two kids, but plans changed. God knew that and I am thankful I was not alone.

As doctors explained later it was nothing I did. I was in the right place at the right time. We also found out she aspirated, which is where milk went into her lungs, it’s a feeling like drowning. We were also told it was good I was breastfeeding as it would of been much worse if it was formula as breastmilk is from the body and her body could deal with it much easier.

During the next week we had lots of tests but all came back negative. So was diagnosed with silent reflux and put on ½ a tablet of adult reflex medication. Thursday night about 7pm, day before good Friday we were sent home.

The next year was followed by lots of test and short stays in hospital and many appointments to her Paediatrician. But unfortunately Lucy was not putting any weight on, well only very slowly.

She was doing up to 8-10 poos a day and it wasn’t firm. So everything was just going right through her. She was diagnosed with failure to thrive. At a month after her 1st birthday she was admitted into hospital again to try get bottom of her weight issues.

At 1 year and 1 month she was only 7.1kg. She was tested for everything you could think of and all came back negative, only thing we got positive result on was that she was low in iron.

We left hospital with no answers but I knew something wasn’t right. She cried almost all the time, wasn’t a happy child at all. Was even told once that maybe she was just like that by a doctor.

We knew something wasn’t right but so far every test we did was negative. She had started to look like she was pregnant, very bloated.

Finally a diagnosis after months of hell!

At about 15 months old we had a Paediatracian appointment as we usually did once a month. This time we were given the head Paediatracian.  He took one look at her and said “I think she has fructose malabsorption and maybe lactose”.

They did the test and lactose was negative but fructose malabsorption came back positive.

Fructose malabsorption is a digestive disorder in which absorption of fructose is impaired by deficient fructose carriers in the small intestine’s enterocytes. This results in an increased concentration of fructose in the entire intestine. Which means Lucy at this time could not eat any fruits and only few vegetables, and also Gluten free as wheat has fructose in it.

Now two years on we’ve discovered lots of fruit and vegetables she can eat. The good news was that from this time onwards she was improving and putting a little weight on but still not putting on what she needed.

Under the advice of a dietitian we went diary free too; discovering Lucy also has a milk protein allergy. Once we made this change we saw a huge improvement. She started putting weight on at the correct rate – went from off the bottom of the chart to 25 percentile.

And she was a happy girl. Her tummy was not as bloated, and now she only does a few poos a day.

Two and half years on she can eat much more food but we are very strict on what she eats. Eating too much fructose can cause her big issues and we stay off gluten and diary completely.

lucy r 2

We do watch that she is getting everything she needs. The fruits she can have, means she is getting the recommended two serves of fruit, and that she is getting her calcium in her almond, rice or coconut milk.

Note from MoM:

First of all, a huge thank you to Jacinta for putting her experience down on paper for us to share. What a harrowing experience for Lucy and of course her family too!  We can only imagine the agony and doubt they must have faced day after day during those early years.

After reading this and talking to Jacinta, here’s a few points we’d like to focus on:

1. TRUST YOUR INSTINCTS! Throughout every negative diagnosis, Jacinta still felt there was an undetected issue. Often Mums just have a feeling but the facts at the time try to push it away. Don’t ever be embarrassed to relentlessly pursue a feeling if you think there’s something wrong. You know your child better than anyone.

2. Think about HOW MUCH FRUIT your kids are eating. In an effort to give our kids healthy snacks, we often turn to fruit. The following chart (eatforhealth.gov.au) shows just how much fruit our kids should be eating each day (and we just discovered our kids are actually eating too much)!

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Think about replacing some of the fruit with fresh vegetables instead!

3. READ EVERY LABEL! It’s alarming just how many products we would think are perfectly natural are actually far from it. Be diligent and get to know the brands that work for you and your family.

Have you ever been in a situation like this? Or a friend? What advice would you give other Mums who feel as though there’s something wrong but no one understands?

Share your comments below – we’d love to hear from you.

Other stories in this category:

  • What a frightening experience to go through. I’d trust my instincts but I wouldn’t self diagnose. I’d just get a second, third or even fourth opinion until I got an answer I could trust

    Reply

  • oh my gosh, how frightening! lucky she was at the expo! thank god!

    Reply

  • I am wondering if the girl may have Coelic Disease which is an autoimmune Disease. She could have a blood test to see if she has the genes at all, other blood tests and possibly a biopsy to get a result. Coelic Disease damages a section of the bowel. Sometimes symptoms disappear but damage is still being done if foods containing gluten are consumed at all. It is alarming how many foods including some salad dressings, sauces etc have wheat, barley, rye or oats in them. Some with Coelic Disease also have food intolerances such as dairy, fructose etc. Often there is iron deficiency.

    Reply

  • I’m aware my kids eat too much fruit, often 4 servings instead of 2 ! I often add veggies to their fruit bowl.
    My youngest has been having lots of runny poo lately and I’m recording her food intake and poo pattern to take to her pediatrician appointment next month.

    Reply

  • If it comes in a packet assume it isn’t natural.

    Reply

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