Zach's Story

For my family our journey of allergy discovery began when Zach was two days old.  I am not certain of this - Zach was a new born baby and I was an inexperienced first time mum - but he was definitely already more unsettled than other babies on the ward. We were in the hospital for a week after the birth and Zach was endlessly crying.  At one point another mum complained about me because I couldn’t stop my baby crying so we were moved off the ward and into a side room. The midwives were helping me but at the lowest point my husband had to call them in the middle of the night to say I needed a break. After one week I was already shattered.

Its difficult to remember or to make myself remember - but I know that it is in me somewhere - the memories, the crying sound, the pain and exhaustion. I cannot recall when I decided that something wasn’t right.  Zach was a very distressed, highly alert and unsettled small baby. He fed and cried endlessly and slept for short periods of time, often just 45 minutes day and night. Photos that I have of him from the early few weeks and months I now find distressing because I can see his discomfort. His skin was swollen with red patches in some areas so red and so raw that they looked like burn marks, especially around his bottom and neck. He had tiny pimples all over his skin on top of the swelling and had cradle cap.  Following repeat visits to the GP and health visitor, I was advised to give him a dummy so that he fed less and given creams and steroids for eczema.  I was given antibiotics when his skin became inflamed and infected at three months old, but the GPs also suggested to me that I was depressed and Zach had ‘gooey baby syndrome, a phase that all babies go through’.

1-2 Months Old

It was during one long breast-feeding session that I began to investigate Zach's symptoms on the Internet.  Every time Zach fed, instantly I felt an intense itching over my scalp and neck and then minutes into a feed Zach’s cheek, neck and ears would become raised, develop red streaks and he would begin itching. His face would become red, lips swollen and a rash would appear on his arms and legs.  This was often accompanied by what looked like stomach ache and constipation for some time after the end of the feed.  This was when I started to investigate cow’s milk protein allergy. 

I again went to the GPs with this suggestion but seemed to hit a brick wall.  I then decided to provide proof and carried out an elimination diet on myself of cow’s milk for two weeks.  Zach’s symptoms did improve initially but then deteriorated again.  By this point, Zach was nearly 4 months old and we were exhausted and decided to try some baby formula for hungry babies, following up the helpful suggestion that maybe the crying and poor sleep were due to hunger.  Our reasoning was that being hungry was worse than the itching that formula may cause.  Perhaps my breast milk was insufficient to sustain his appetite, plus I needed a break and some sleep. My husband therefore gave Zach a bottle of formula before bed.

How ignorant we were to food allergies and to our sons’ suffering. Within minutes his face became bright red, his eyelids and lips swelled and he began to cry.  He was sick and had diarrhoea.  We undressed him so we could watch and listened to his breathing.  We discussed calling an ambulance but Zach wasn’t getting worse so we waited.  Eventually he stopped crying and fell asleep snoring.  That night we popped into his room regularly to check on him.

There was a silver lining even to that horrendous night.  I finally had the proof I needed to get the GPs to listen to my thoughts about Zach.  The next day I relayed the events and thankfully a referral was made to a community paediatrician.  The same GP also provided stronger steroids and a thick moisturizer to start a skin care regime for Zach.  That was all we needed to begin our journey of discovery and to begin to put an end to Zach’s suffering and the heartache I had been going through as Zach’s mum.

5-8 Months Old

We waited a couple of months to see the paediatrician.  Still breastfeeding, I eliminated dairy and soy from my diet, at the suggestion of the health visitor that dairy and soy allergies often come hand in hand.  I was desperate for a coffee with proper milk especially as at 8 months Zach was still waking every two hours days and night for a feed.  The health visitors in the meantime had referred to a dietician. I had so many questions.  I needed to know some answers because at 5 months we began to wean Zach onto pureed foods. I needed to know which milk I could use for the baby rice.  I also wanted to know about a formula that Zach could be given and whether I could wean him using rice milk, or oat milk. So many questions.  I finally got my answer that oat milk with added calcium would be adequate.

I had felt quite excited about the weaning process, loving the thought of my child trying flavours, textures and watching his reaction.  However, the whole process became filled with anxiety.  As I followed the baby weaning programs of fruit, vegetable, rice, it became clear that Zach had multiple allergies. While eating food such as avocado, mango and lentils, he would have what I now know are oral reactions, he looked like he had waxed his top lip, or the cheek rash would appear. I needed to know about food groups, allergenic foods, which to avoid and I need some direction but there was none available to me. The whole time I was terrified that at one mouthful I would endanger Zach’s life.  It sounds dramatic but the unknown is so frightening.  

I also worried about nutrition and variety of food because I was clueless and every book about weaning stressed the importance of nutrients, calcium and weaning on many foods.  I however felt unable to do this.

At the time, I stopped going out and I focused all of my remaining energy on Zach, trying all avenues to gain knowledge (health visitor, GP, dietician, internet); on my husband to keep him up to speed and on my mum, sister and best friend to see if they could shed any light on what was going on. I didn’t feel like I was failing as a mum, because I knew it wasn’t my fault, luckily. But I did feel full responsibility for sorting it out and an almost all consuming urgency to do it because every day, every feed, every sleep he was distressed. Breastfeeding was harming him. I think it was this sense that left me feeling quite desperate and out of control.

 

8 Months Old

During our first visit to the paediatrician, my husband and I relayed the information to her.  She listened and then examined Zach, noting his poor skin condition.  I then breastfed Zach during the meeting, as he required a feed.  The paediatrician was able to watch the process and the urgency with which he fed and then the squirming distressed baby that he became. She said that she would refer to a hospital-based paediatrician who specialised in allergies and speak to a dietician about formula. I felt that we had had a breakthrough.  I felt redeemed almost, that I wasn't going mad, I wasn’t just sleep deprived but there was something very wrong and that it needed to be investigated.  The letter of referral that she wrote described Zach as ‘a little boy under a lot of stress’.  It was awful to read, but absolutely correct.

The paediatrician was wonderful and a few days later she phoned me with the name of a formula, Neocate.  She had also referred to a dermatologist, dietician and paediatric allergy specialist. Also the paediatrician made another referral to a specialist for suspected gastric reflux thought to be associated with the difficulty feeding and sleeping. I was so grateful and relieved, I cried.

I stopped breastfeeding at 8 months, having introduced Neocate formula.  We tipped Zach’s mattress to try to address reflux and with some effort and patience, Zach’s sleep began to improve.

9 Months Old

At 9 months we had our first appointment with the dermatologist and the dermatology Nurse specialists who diagnosed moderate-severe atopic dermatitis.  We had blood taken for food allergy testing and were given a skin care regime for Zach which included a cocktail of strong steroids and a thick moisturizer.  They also helpfully explained that even when a rash cannot be seen, there can still be itching under the skin so advised to prolong steroid use for up to four days even when the visible signs of a rash had cleared. They provided reassurance about the use of steroids and discussed the advantages for Zach versus the down sides.  By our next appointment 6 weeks later, Zach’s skin symptoms were completely under control and we had the results of the allergy testing.

Zach was allergic to wheat, nuts, cows milk, egg and fish, but not to soy.  However, I had already tried Zach with wheat by that time in the weaning process and he had seemed ok so the dermatologist explained that the blood tests in this age group are not definitive and, because they are changing and the immune system is adapting and maturing, it is therefore best to look at history, test results and clinical presentation. It was therefore decided that he was no longer allergic to wheat thankfully.  During this visit we also saw a dietician for the first time who calculated Zach’s calcium intake on an estimation of the Neocate formula he was drinking, advised a calcium syrup supplement and advised on soy yoghurt, custards and cheese which we could now add to Zach’s diet.  I now felt equipped to manage my son’s allergies.  I knew which foods to avoid, had vitamin drops and calcium supplements, and were using some soy food replacements.

11 Months Old

At 11 months old we saw the paediatric allergy specialist and the team including dietician and nurse specialist. It was in this meeting that the discussion of an Epipen came up. It was basically a discussion between the health care professionals with the debate being that Zach’s blood test levels show he requires an Epipen, but his lifestyle may mean that he doesn’t.  Basically, I was a stay at home Mum and grandparents did not live nearby, so really I was his sole carer with my husband at the weekends.  It was therefore decided that the likelihood that any risk would ever come to Zach where he would have an anaphylactic shock was so minimal he did not need an Epipen.  I was also advised that the dieticians would manage the ongoing weaning process and I would have a review at 6 months.

When I got home and spoke to my parents, sister and husband I realized that actually Zach and I both needed an Epipen.  For me it was irrelevant that Zach was mainly with me.  He was growing up, trying new experiences and I wanted to be a mother who could relax slightly when we were out.  The Epipen at least would give me a certain amount of security.  We contacted the hospital and were given one with a training session at our request.

1 Year Old

At Zach’s first birthday, my husband and I did all the catering.  I am not a great cook but I was determined that Zach would be able to eat anything he wanted.  We even found a local bakery that made a dairy and egg free cake for him. 

Anaphylaxis

We have had one episode of anaphylaxis when he was 19 months old.  At a friends house Zach ate a small bit of allergy free crumpet.  I however didn’t check the packet until the last minute and it contained egg white.  Zach had already swallowed.  It was an odd sense.   He didn’t react straight away, in fact nothing happened for about 30 minutes.  In that time I started to think maybe he was no longer allergic.  Then he very rapidly deteriorated.  He began to sneeze repeatedly and itch his nose.  His nose and eyes became swollen and patches became raised and red on his arms and legs.  He was crying and hot, so I took him outside.  He then stopped crying and became drowsy, closing his eyes and feeling a bit limp.  At that point I put him in his pushchair because I thought he might be tired.  I quickly realized what I had done and picked him up again, jiggling him around and shouting at him to stay awake while I made it back to my friend's house.  I didn’t know what to do so I called my husband and he told me to give him Piriton.  My friend ran to a pharmacy and that’s what we did.  Zach then fell asleep on me for an hour.  When he woke up, his skin had gone down, but he stood up and turned deep blue around his mouth and nose.  His whole body began to shake and he was very cold.  We wrapped him up, but he was ok and was smiling and wanted to play.  We gave him more Piriton and the worst was over.

Before that happened, I thought I was quite calm in a crisis.  However I didn’t know what to do. I should have given him the Epipen as he was clearly having an anaphylactic reaction.  No matter how prepared I thought that I was, when it happened to Zach, I was frightened and not prepared at all.

On reflection

Very little is known about allergies, even among the first line of help, the midwives, health visitors and GPs.  A lot of suffering on Zach’s part could have been avoided if there was more education around allergies and his symptoms had been spotted and I had been listened to earlier.

From a nutritional point of view, I realize that Zach did not receive the right amounts of nutrients.  This could have been prevented by better initial identification of suspected allergies in the community, shorter waiting times to see hospital based specialists and then ongoing support and better access to these specialists, even if just for the few crucial months of weaning.

With hindsight, I would have asked for more help as well.  If help is available just to get a break, or to go and see the health care professionals without your child, then that is very important.  On my own faced with an team of professionals and managing a child, it is very difficult to ask the right questions, listen and get a clear plan of action together.

Family especially and some friends would have helped but I found it very difficult to trust people because I wasn’t sure that I could trust myself.  I was uncertain as a mother but I knew that there was something major that was not right with Zach.  I just could not put it into words or name it.  Trusting others with the care of my child was a very difficult choice.  I am lucky in that I didn’t have to go back to work and I wasn’t forced to make that choice.  I kept Zach with me at the expense of other things, because it was my job to help him.  At the time I felt huge claustrophobia and resentment, but now I am glad that I remained with Zach all the time.

Education and communication would have vastly improved our experience. The first year of Zach’s life, both for him and me was definitely the most difficult.  I am much better able to cope if I know what I am dealing with.  The sense of being out of control was overpowering in the first especially 6-8 months and at times I did wonder if I was depressed.   Now when Zach’s skin flares, we have a solution and we also have an Epipen and we know what to avoid. Zach has a balanced diet and is thriving.  I have learnt to hide my anxiety and react calmly on the odd occasion at a toddler group or party when Zach has appeared with a biscuit that he can’t eat.  There are still challenges ahead.  I am very conscious of inclusion and want to be very careful on the approach we take to educating Zach about the food he can and can’t have.  I want Zach’s experiences to be positive and I want to be able to empower him.  I have learnt to ask people for help more and to be more assertive for the sake of Zach.  I have learnt and am still learning that Zach’s allergies are potentially life threatening but that, as a family, we can live with that and that I can educate Zach to allow him to feel positive about his allergies. I am still learning to not worry about what other people think so much and that I am Zach’s mum and therefore - believe it or not - I do know what is best for him, and that I can make things ok for him whatever the future holds.