We really have so many stories its honestly hard to know where to begin!
Do I talk about the time in preschool, when I arrived to pick my daughter up to be told “she’s just started feeling a bit sick in her tummy & has a little rash on her hands” which was hives & the start of anaphylaxis due to exposure to egg while doing egg carton craft.
Do I talk about the time she had a peanut trial at the kids hospital & was completely fine the whole time (6hrs) we there, but when we got home to the Central Coast I just felt something wasn’t right & by the time we got into Gosford hospital was in full anaphylaxis. It was later determined it was a delayed anaphylaxis.
Do I talk about the time when she was 5yrs & was having a run of “anaphylaxis of unknown origin” only to be told, it was probably from a protein base that hair lice lay down with their eggs.
Do I talk about when we started school & all EpiPen’s were locked up in a cabinet in the office where one person held the key? And how hard I had to advocate for that to change, or the time school actually lost her EpiPen! And the fact it was only discovered because I wash her EpiPen bag every school holidays. (I opened the bag & no EpiPen)!
Do I talk about the time she was 6yrs went into surgery & as I walked away after kissing, remembered I forgot to ask them to take some bloods only to hear a code called through the plastic doors. Which was due to the fact the anaesthetist had given her a drug she was anaphylactic to. (Yes he knew, yes he rolled his eyes many times as I told him in the pre-op consult)!
I could go on all day, but maybe I should just start at the beginning…..
In 2008 I was working as a Nurse on the Central Coast (& after our fair share of trying) my husband & I were excitedly expecting our first child. I was stupidly confident I knew what we were in for. I had worked in kids ward & transferred sick bubs from our hospital to Sydney hospitals for treatment. I had seen babies at their sickest, at their worst & I was very confident in that situation. I knew my stuff.
Because I have all the immune disorders in the atopic march (anaphylaxis, allergies, eczema & asthma) when we first started trying to have a baby my immunologist at that time said to me, there was some emerging evidence to suggest that if I stayed well & didn’t have any eczema flare ups or anaphylactic reactions while I was pregnant maybe those genes would not be “switched on” in my baby. (NOT at all true guys, we know this now).
I was so healthy during my pregnancy, I loved being pregnant. I ate all the food groups, I kept up exercise. I read all the allergy info; Lived on handfuls of nuts Tick! Ate plenty of eggs Tick! Had a dog, Tick! All this & not a single reaction, look at me go!
One very stormy night after a few minor dramas (in the scheme of things) our wish was granted & THE most beautiful baby girl Jade came into our lives. We were instantly besotted! We had to stay in hospital for the next 10days but we were then set free to be a family. My husband had only taken 2 weeks off so by the time we got home & settled in he only had a few days & had to return to work.
At day 12 our baby was not at all happy. She screamed a scream I had never heard before. She arched her tiny little back, she pulled up her legs when she could. She was clearly in pain. I immediately thought colic. It made sense, the screaming was after a feed so that must be it. She continued to scream after every feed, the community midwives continued to tell me it was ok. It was probably wind & we continued to try different ways to breastfeed to prevent her getting so much wind.
On the night of day 14 my husband was asleep as I picked up my tiny Jade getting ready to feed her. I had a white cloth nappy that I placed under her head as I changed her as she had started puking a little bit whenever she was laying down. She was wriggly, agitated & then she turned her head to the side & vomited, a fair bit. It looked dark so I put the side table light on & saw the bright red blood. I screamed at my poor husband who was in the car & driving us to emergency before he had even understood what happened.
At ED, Jade had all the checkups, they tried to test the blood on the nappy, but couldn’t. She continued to vomit some brownish blood over the next couple of days, but we were never quick enough to catch a sample of it. The paediatrician on that day thought it was probably “maternal blood” & that her screaming was just colic & home we went.
Trust your instincts! The maternal blood never sat well with me, my nipples were not cracked, it wasn’t painful to breastfeed. Why wasn’t their bright blood in every feed if it was coming from me?
We continued back & forth to our paediatrician who thought this was much more serious, Jade was not gaining weight like she should be & he believed she was possibly developing reflux or a food allergy. He made arrangements for us to be seen by an immunologist at the kids hospital Westmead.
Once again at day 20 we were back in ED with Jade vomiting bright red blood, she was now transferred to Westmead kids for further investigation. At Westmead we were placed under a Gastroenterologist, I had to express milk & it was tested & came back negative for blood. Therefore it was not maternal. At just 21days old our beautiful girl started her allergy journey. There are NO WORDS to describe watching your 21 day old baby being wheeled off to theatre. I had done that job a hundred million times, never as a Mumma. Jade had her first endoscopy & to no one’s surprise it came back that she had a small oesophageal tear, allergic oesophagitis & moderate reflux.
We were advised that Jade was probably better off on a formula. I had done my job of supplying her with breastmilk & antibodies but if she was to thrive we needed to change to a special hypoallergenic formula with thickener. This was a no brainer of course we agreed. But I wasn’t quite prepared for the grief I felt. Breastfeeding was still very heavily advocated for & I felt like a complete failure & worse like I had caused her allergies. Even while we were still in & out of hospital trialing formulas & getting her medication right, there were still nurses who were pushing me to “fight for your baby,” You tell them you want to keep breastfeeding, you can express & add the thickener to breastmilk. I was a complete emotional wreck between by rational, medically educated brain (which was telling me I was doing the right thing) & my heart (which was telling me I was less of a mother for choosing to take the path me did).
Jade thrived on her formula! She put on weight, she still cried after feeds but it wasn’t a blood curdling scream. All her tummy could take was 120ml, so rather than 4th hourly 240ml bottles we were doing 2nd hourly 120ml bottles. We did skin prick tests for allergies & started seeing our amazing immunologist. We elevated her bed, we kept her upright after feeds, we delayed tummy/flat floor time & she was happy.
If I had a dollar for every time we were told “she will grow out of it” I would be living at Milsons Point! At first it was 3months, when she is 3months she will out grow the reflux. Then it was 6months. At 6months the atopic march continued & we now added eczema into our blue book. She will out grow the allergies, reflux & eczema by 12months, most babies do. That too came & went…
By 18months to 2yrs most kids will outgrow childhood eczema, allergies & reflux we were told.
Jade is now 10. Jade still has anaphylaxis, Jade still has periodic eczema (I know how to control that now) AND Jade still has reflux as well as a dysfunctional swallow. Jade is still very much a frequent flyer at Westmead Kids hospital, still sees the same immunologist & gastroenterologist, sadly she has never known a life any different. But Jade is Happy!
Stephanie can be contacted on the details below or visit the online store for babies, kids and adults who suffer with eczema, asthma, skin allergies & food allergies.
Ph: 0452 232 967