Our Story

From birth to FPIES diagnosis.

George was born on 30^th July 2014. He weighed a healthy 8lbs 11ozs / 3.94kg. We gave George some formula for the first week of his life as my milk was delayed due to complications during the birth. When it did arrive, breastfeeding was challenging but was established. George was never a good feeder (retrospectively this was probably due to allergens transferring through my milk) and screamed, arched his back, pulled off and cried frequently during feeding.

When George was 6 weeks old he contracted what we (and the doctors) presumed to be a gastro bug. He had profuse diarrhoea for 10 days (upwards of 12 diarrhoea filled nappies a day). This eventually settled but was a big concern to me at the time as he was so young. George continued to have trouble breast feeding. He would eventually only feed well if he had his dummy close by and could stop for a few sucks in between mouthfuls of milk. We persevered and around 5 months we decided it was time to start solids.

George’s first foods were mashed banana and mashed avocado. He was interested in eating, had shown signs of being ready for solids for weeks before we started. He took a few bites but wasn’t too interested so we held off for a few weeks and tried again with farex rice cereal mixed with breastmilk. He seemed to enjoy this, but this was the time that his eczema was starting to flare badly.  

We struggled to get George’s eczema under control for months. It seemed to be continually getting worse. I noticed that the night I ate peanut satay for dinner George woke screaming every hour. I made an appointment to see a paediatric allergist and he did skin prick testing. George showed a positive response to egg and peanut, so RAST testing (a blood test) was ordered and when those results came in we were informed that George’s reaction levels were high but not life threatening. I immediately removed egg and peanuts from my diet as well as dairy. Initially we saw some improvement in his eczema by the removal of dairy however it didn’t last for long and before long George’s face and neck were back to being as bad as ever.

During this time George developed what we were told were staph skin infections that required antibiotics to clear the infection up. From January to April George had 5 long courses of antibiotics. The staph would clear and then once the antibiotics were finished it would return within a week or two. It felt like a never ending cycle. George was so itchy and unsettled at night in particular during this period. He would very often scratch himself raw and we’d find blood on his cot sheets in the morning.

Finally what worked for George’s eczema was a mix of traditional topical steroids and an alternative anti-fungal treatment called Manuka paint. We find this mixed approach to be the most effective in keeping George’s staph infections away. His eczema has had periods where it’s been dormant however it has also flared badly even with constant steroids. I think this is food related, that his skin is showing signs of not tolerating a food.

When George was 7 months old I roasted and pureed some orange kumara/sweet potato for him. The first day I gave it to him he developed a small rash down the side of his face. However he seemed to enjoy it so I gave it to him again the next day for dinner. About 3 or 4 hours after dinner he woke screaming. A horrible sounding scream, different to usual. We rushed in to find his face bright red, almost as if it had been burnt.  Not knowing what to do, we treated it as eczema by applying a topical steroid cream and moisturiser and putting George back to bed.

All was calm and things progressed seemingly as normal for the next few weeks. On 31^st March I gave George some mashed banana for the first time since his first tastes right back when he was starting solids. Here is an excerpt from the email I sent his allergist the following day:

“Yesterday I gave George some mashed banana at lunch time. He had had banana a couple of months ago but developed a small rash near his nose and eye so I stopped giving it to him. 3 hours after eating the banana (about 1/4 small banana) he started projectile vomiting. He continued to vomit profusely until all that came up was fluro yellow bile. We went to see our gp an hour after the vomiting started, and George was thoroughly checked out and then observed for an hour until he stopped vomiting. The doctor gave him cetrizine but George vomited it straight back up. He managed to keep a small amount of breastmilk down overnight and seems ok this morning, although refusing solids. Obviously we will avoid banana. Would you think this is an allergic reaction or just an intolerance?”

His allergist replied that he felt it was an allergy and that we were to avoid. The vomiting episode to banana was terrifying. I was trying not to overreact in my email to the allergist however I was very very concerned. George had been very unlike himself in between vomits, he became increasingly pale and lethargic. It was very scary for us to see him like that. The following day he wasn’t interested at all in eating any solids, although a couple of days later he was interested in eating again. A week later it was a bit like groundhog day. Here’s an excerpt of my email to his allergist after that episode:

George had another vomiting episode on Sunday (the same week as his banana reaction). This time it was to Watties baby muesli (primary ingredients: rice/wheat/oats) which he has eaten many times without trouble in the past, but had not eaten it for 4 or 5 days previously. George didn't really want to eat much of it, only about 1 tsp. he then had a nap. Around 3 hours later he was awake and playing when he suddenly began to vomit, just like with the banana on Tuesday. He continued to vomit every 10-15 minutes. In between vomits he became very pale, tired and almost floppy. He definitely was not himself. He continued to vomit as we waited to be seen at Kenepuru after hours (it was a 2 hour wait) and by this stage it was just fluro yellow in colour. Once we were seen the after-hours gp referred us straight to the paed team at Wellington hospital so we headed straight there. We saw Dr Peat initially and then later Dr Foley assessed George. He had stopped vomiting by this stage and was beginning to come right. Dr Foley was pleased to hear we had seen you and said he would leave the food and allergy side of things to you. We were discharged later that afternoon. He recommended we give George the baby muesli again on Tuesday (today) and didn't necessarily think there was a link between the food and vomiting. To be honest my gut instinct is that there is a strong link. I'm naturally tremendously nervous to give George the food again and have actually made a doctor’s appointment with our gp for 11am, a couple of hours after I plan to I've George a very small amount of the baby muesli. Just in case. I'm hoping our gp can refer us for some dietician support too as we feel at a loss as to how to feed George.

Another scary scary episode. I did give George the tiniest (maybe 1/8^th of a teaspoon) amount of baby muesli two days later and he didn’t vomit. However he wasn’t interested at all in eating it and I don’t think he even swallowed any? He was right off his food during this time. I guess he had a sore tummy after all that vomiting. He had awful poos for the following few days, really sticky foul smelling. I didn’t hear back from the allergist after I emailed him as he was on leave for a month. However we were referred to a dietitian after the second vomiting episode.

About 3 weeks later we met Linda the dietitian, on April 28th. I liked her immediately. We talked about George’s allergies and recent episodes of vomiting. We talked about how I was struggling to breastfeed George and felt that he was increasingly reacting to things through my breastmilk although I couldn’t pinpoint what. We discussed trialing soy formula as well as giving oats a try to see how George went with them (the baby muesli he vomited to was oats/wheat based). Here is an excerpt of the email she sent me the following day:

“I also was reviewing our session and came up with some other suggestions to try:

Carbohydrates – if tolerates oats – continue as great breakfast option, try wheat in the form of bread and pass, if well tolerated you can try couscous aswell, as it’s a grainy consistency you might need to add it to a vegetable such as mashed carrot for George to accept the texture. If George is OK with wheat then you could get some biscuits or crackers as long as they are egg/milk free, Homebrand, Arnotts and Budget often have thee but you would need to check the labels.
Fruits – try melon to chew, apple, mashed berries, citrus (these might flare his skin due to a contact reaction).

Veges – add green beans and swede.

Let me know how you get on with the soy.”

I responded a week later:

“Oats- I started George on oats on Wednesday morning. He had them weds/thurs/fri morning. He had an enormously sloppy bowel movement on Friday night (which smelt terrible) and his eczema flared pretty badly. I'm not sure what that means- a pass or a fail? I haven't given him any more oats since as wanted your opinion. Because of this I haven't trialled wheat yet.

I've successfully introduced pureed silver beet. I also found some corn couscous (at Moore Wilson's Porirua) and some Orgran brand rice and corn pasta that I've given George and he's been enjoying those. I figured that as they were based on a previously introduced food they were ok to add in. He has had regular poos again since I stopped the oats. George's facial eczema is calming down again too.

Today I began introducing salmon. I bought a can of pink salmon (no salt added) and flaked a small amount of the flesh into George's lunch of rice, peas, pureed silver beet and mashed carrot. He really enjoyed it. I'll give him some more the next 2 days. Hoping the soy formula arrives by the end of the week so will start introducing it then. 

He's been eating a range of foods such as corn couscous, brown rice and quinoa, boiled potato, silver beet, pear, prune, peas, mashed carrot, thin slices/batons of cucumber. I'm ensuring the texture is less pureed and more mashed/chunky.” 

Linda responded:

“I am pleased to hear you are making some progress with widening George’s range of foods. I would suggest another trial of oats maybe every other day for 6 days to see if you get the same response. I think it is important to establish if the oats are the problem or something else. I do not like restricting foods if we are not 100% sure it is the food that is the problem.”

A week later I emailed Linda again as things had really deteriorated:

“We're having a terrible time here. George is refusing to eat much of his solids. He will have 1 or 2 tsp before crying and turning his head away. With breastfeeding he's not doing well either. He will latch on and take a couple of sucks before pulling off visibly upset and crying. I've been getting him to drink a decent amount of water. He's screaming when he's going poos (it's just horrendous to see him so upset). He's spending hours awake overnight crying and screaming and it's exceptionally difficult/some days impossible to get him to take a nap. It's never been this bad... Or for so many days consecutively. I don't know what he's reacting to but it's clearly something. It might be something I'm eating? I'm at a complete loss. He last had soy over the weekend and I haven't given him anything new since the screaming started. He's clearly in pain and so upset. Any help or advice would be really appreciated.”

Linda rang me pretty quickly and we discussed trying George with an extensively hydrolysed formula called Pepti Jnr as he hadn’t tolerated either regular cows milk or soy formula. Linda faxed a prescription for a tin of pepti jnr to the local pharmacy for us to try. Things began looking up and I made the difficult decision to start weaning George onto the formula.

A fortnight or so later I got in touch with Linda again to let her know how we were getting on.

“Pepti Jnr continues to go really well! On Saturday at lunch time I tried to introduce peeled boiled potato, which George seemed to enjoy but within about 3 hours George had a very red rash around his mouth, his eyes were red and watery and he was extremely itchy. I gave him antihistamine before bed. He woke constantly overnight and in the morning his eye was extremely swollen and his face and neck was covered in eczema. I went back to rice and pears and his skin settled back down.”

Linda seemed a bit stumped about the potato reaction and suggested trying to introduce a meat such as beef. I tried beef but George didn’t seem to tolerate it at all. I decided to reintroduce lamb and that seemed to go well. At this point George was eating lamb, rice and pears. I had pulled all other foods as they seemed to be upsetting George’s tummy/skin/sleep. George’s everything really.

On the 9^th of April we travelled to Otaki to see Blair’s Mum for her birthday. I’d started giving George some zucchini that week. On the day we were driving north from Wellington we smelt the most hideous smell from the back seat. George had had explosive diarrhoea that covered him right up to his armpits. We’d never seen anything like it. It smelt tremendously vinegary. Looking back at photos from the day before I can see George’s skin is beginning to flare again, especially on his temples and forehead. His cheeks are also red and beginning to look quite scaley.

In the following weeks we started a new staph management routine and began to take the control back in regards to George’s eczema. It was an intense routine, very time consuming, but it worked. And it continues to work. We haven’t had any more staph infections since beginning this routine.

We became increasingly concerned with George’s bowel motions in May and June. His poos were looking very pale for a while which was worrying. He was terribly constipated, and on regular laxatives to try and help him go more frequently. They didn’t seem to make any difference. He was having extreme pain in the lead up to and during the time he was going poos. George would scream and scream and he would cry a lot. It was just awful to watch him. We started becoming the parents who took photos of their kid’s poo – something we never thought we’d be. The GP didn’t seem concerned when I showed her the photos but she did check and find an anal fissure. George was prescribed cream to help it heal. It did eventually heal but the pain going poos continued. We decided to see a private paediatrician to get the help I felt our GP wasn’t giving us. Something clearly wasn’t right. We had a very unhappy wee boy on our hands who was in pain and I felt I wasn’t being taken seriously.

The paediatrician was concerned enough to refer George on for further testing. We are waiting for an upper GI swallow to rule out malrotation. George was prescribed reflux medication to see if it would help his sleeping as he was still waking about every 2-3 hours overnight, and was terribly upset each time he woke. I was reassured to be taken seriously and to have my concerns listened to. It was validating to know that my gut instinct was correct. Something wasn’t right with George.

George would spend most of the afternoons during the months of April, May, June refusing to have his afternoon sleep and screaming – in pain? I felt like he must be. He was generally pretty complient and happy in the mornings, would have a decent morning nap – sometimes up to 2 hours – but come the afternoon things went severely downhill. He was barely eating any solids and at times was refusing to breastfeed. I felt like I was getting so worn down trying to work out what on earth was wrong with my baby. His GP wasn’t taking me seriously (it was implied it was my history of anxiety at play, that there was nothing wrong with George, that I was making it up) and I felt like I was banging my head against a brick wall.   

By June I had decided to fully wean George onto pepti jnr which he seemed to be tolerating well. He had his last breastfeed and took to the bottle very happily. Whilst weight gain had never been an issue (George sat comfortably in the 50^th percentile for weight) he started to gain weight more rapidly and moved up to the 75^th percentile. In mid June Linda the dietitian recommended I trial a range of foods that George had previously had reactions to, or foods I hadn’t tried for awhile. She was keen to expand George’s foods from rice, pear and lamb – as was I! But I was also hesitant and worried about how his skin and gut would respond. Avocado was the first on the list Linda wrote for me to try that I trialed with George. Within 10 minutes of eating ½ a teaspoon George developed a red rash around his mouth. The following day I gave him 1 teaspoon of mashed avocado and the rash appeared immediately. I pulled that trial there and then. I didn’t want to risk what might happen if I did continue!

On Thursday, June 2^nd I had a phone consult with George’s allergist. I wanted him to hear exactly what had happened in the past few months. I didn’t know if he had read my email whilst he was on leave, but I decided to give him the full run down assuming he hadn’t. FPIES was what the allergist said it all sounded like. FPIES. Something I had quietly been reading up on and researching since the banana incident. George had FPIES. We had a diagnosis. It all made sense, and my instincts were confirmed. This wasn’t normal. This was FPIES.

So, now we have a diagnosis. We can start to work towards a baseline of foods for George. That means foods George eats and drinks that don’t cause a reaction. Rice, pear and lamb have been staples in his diet for the past 6 months. However severe constipation, eczema and terrible trouble with screaming and poor sleep have marked this past 6 months. I don’t think we are at a baseline yet but I truly do hope that with the correct support we can get George to a place where he isn’t in pain/discomfort on a daily basis.