Our son Noah was born on the 16th of May 2001 and from the second we saw him he became the most important thing in our lives! It is difficult to determine or say absolutely what has caused Noah’s allergies as the variables are too numerous! I am not a Doctor, the following is merely an account of our personal experience with allergies. It is about our battle to find a ‘cure’ for Noah and encouragement for other parents to seek several opinions and to advocate strongly for what they believe is best for their child. Despite the many well intentioned outside influences and advice we have received (friends, family and health care professionals) I have always been very intuitive to Noah’s needs and wants and have tried to stay very true to these. Prior to having my son I knew very little to nothing about allergies.
Background to the Development of Allergies
Neither I nor my husband has a history of allergies in our families. My family have a history of a rare metabolic disease that claimed the life of my 22 month old sister. Due to concerns about my own blood sugar levels (BSL’s) in pregnancy I had been advised to consume dairy products, mainly milk, as this was really helping with stabilisation of my BSL’s. I had never been a very big fan of dairy but enjoyed the excuse to indulge in many chocolate milkshakes during my pregnancy as well as loads of cashews and almonds in attempt to keep my sugars stable. While this did prevent a life threatening episode of hypoglycaemia I believe it affected our unborn child. In hindsight in utero Noah had the hiccups literally all day every day which can be a sign of allergic reaction to what mum is eating. When Noah was born this same concern about sugar levels prompted the insertion of a nasal-gastric tube and the introduction of cow milk formula when Noah was only several hours old. Unfortunately I was not offered the opportunity to put him to my breast.
As Noah had been stuck in the breach position since 24 weeks (no amount of acupuncture, yoga, swimming or music would turn him!), he was also born with congenital hip dysplasia (clicky hips) and put in a full body brace called a VonRosen Splint from four days old. Between nasal-gastric tubes, splints and IV drips establishing breastfeeding was difficult to say the least. I absolutely destroyed my nipples trying to express colostrum for him to drink and to get him to attach. By the time I got home my breasts and nipples were a bloodied mess. I remember crying my eyes out with the pain and dreading the next feed. However I remained determined to feed. In desperation we rang the closest Lactation Consultant in our area Robyn Noble. To this day I am grateful for those excruciating nipples or else I would never have met this remarkable lady! A few hours with her and our breastfeeding was successfully established and we were on our way!
At four weeks old Noah ‘popped’ an enormous inguinal hernia and had to have surgery to repair it. His bowel motions which had never been great became more explosive, green and mucous like and he soiled every nappy. After this I realised that he couldn’t cope with the amount of milk I was drinking and cut right back. Despite the trials I was still really enjoying motherhood even though I was breastfeeding 24 hours a day in an effort to keep him happy. We gave Noah his first vaccination to the day of eight weeks. Four o’clock the next morning I was feeding him in the dark and noticed some shadowing on his face and went over to the lamp to take a better look and started screaming. He had a huge yellow scab, basically thick cradle cap, over his entire face! It was horrific! It looked like he had been burnt in a fire! Every time he moved or cried it would crack and bleed. We immediately called our Paediatrician who said he had had an allergic reaction to his vaccination. From this day on Noah also developed eczema. It was truly heartbreaking; people literally recoiled back when they saw his precious little face. I feel that people stopped seeing our baby and just saw his skin. We were desperate to clear it up and against using cortisone cream for the rest of his life- which had been the medical advice! Robyn advised me to completely cut dairy and wheat out of my diet which I did with some major improvement to his skin. What kept me going was Noah’s beautiful disposition. While he cried all night, he was easily distracted and happy during the day. I had no idea what attachment parenting was but Noah demanded it of me and I happily complied.
At five months I caved to the enormous pressure and gave the second vaccination, only wanting what was best and safest for my most adored son. We had been assured that the chances of a second reaction were slim. We held our breaths but his skin did not deteriorate. Though four days later Noah started to develop hives from everything! Shampoo, moisturiser, food, clothes and toys; the list was endless! Noah also developed hay fever and started snoring when he slept. He went from sleeping 1-2 hours at a time to waking every 25 minutes. He had so many bowel motions he would bleed from his anus. He was having symptoms of anaphylaxis to my breast milk. (Anaphylaxis is the most severe form of allergic reaction and involves two or more systems – skin, respiratory, cardiovascular or gastrointestinal). Several times his face would swell and he would become covered in hives and appear to wheeze after a feed. We were sent to a Paediatric Immunologist and Allergist who confirmed that he had multiple sensitivities and allergies to food and environmental factors. I couldn’t believe this was happening! While she supported my desire to breastfeed she felt that it would be extremely difficult to maintain as his allergies were so wide spread. Noah’s reactions to his vaccination were never recorded by anyone in the medical field. When you read statistics on Vaccination reactions they do not include mild reactions(??) like eczema and life threatening allergies.
We started seeing medical specialists, homeopaths, naturopaths, osteopaths – I am sure several psychopaths – in an attempt to settle his gut and allergies with no success. We massaged, prayed, took drops and pills all too no avail.
We went back to Robyn Noble and with her enormous support we started to eliminate foods and toxins from my diet and lifestyle. We got rid of all the toxins and chemicals in the house. Dairy and wheat had been eliminated from my diet for months. We immediately cut out egg, nuts, preservatives and brown sauces. Next went all soy products, gluten, cow beef, citrus fruits and sugars. Still he screamed all night and his bowel motions remained fowl though his hives started to disappear. Next went all seafood, most salicylates and amines (I hadn’t even known what these were but basically most fruits and numerous vegetables, herbs, olive oil basically anything that added flavour or colour!) This was really hard as it was almost Christmas and I had almost nothing left to eat or drink. By this time I was struggling with sleep deprivation and to be honest depression. Few people could believe a child could be so allergic – from family to health care professionals- and we faced constant criticism and scepticism.
I felt like a complete failure and totally isolated. I was also angry at the injustice of it all. I had done the Better Babies diet prior to conception, antenatal yoga, cared for myself during pregnancy, played Mozart to my unborn child! This wasn’t supposed to happen to me! I was grateful that I had never drunk caffeine and water was my main fluid because at least I didn’t lose this! Robyn Noble became my lifeline and kept me going. At Christmas 2001 Noah had an anaphylactic reaction to some unidentified whey (dairy) in a probiotic and we had to rush him to hospital. We started carrying adrenalin after this. Any progress we had been making with his sleep ceased. In January 2002 I finally snapped. I had been living on a diet which consisted only of organic Lamb, Chicken, potato, rice, pumpkin, carrot, beans, sunflower oil, garlic and pepper for months. I rarely slept for more than 30 minutes at a time. What people do not realise about chronic sleep deprivation is that it attacks your self confidence and your ability to communicate with others. It leaves you feeling quite isolated and paranoid. I was also quite agoraphobic to leave the house for fear of exposure to something else that would cause Noah to become anaphylactic. I knew I had to make some dramatic changes to my life or I was going to become a danger to myself. Never at any time was Noah compromised I loved him and worshiped him more than ever but I hated nearly everyone else.
The turning point was when I contacted the Australian Breastfeeding Association and the anaphylactic support group (FACTS). Robyn also started asking me to attend her clinic each Friday as an outing and slowly I re-emerged back into society. Despite the warnings that Noah would be a “failure to thrive”, anaemic and be lacking in all sorts of vitamins and minerals I exclusively and successfully breastfed him until 14 months old as every time we attempted solids he bled from the bowel and his health deteriorated. He never dropped in weight and interestingly never became sick even with a cold until the introduction of solids. I helped regain my sense of control through reading everything about breastfeeding, diet and natural/attachment parenting. I started to move in circles where breastfeeding a 10 month old was the norm and it felt great. When Noah was about 15 months I slowly introduced a few new foods to my diet. My diet is still very restricted even today but compared to the early days everyday is a party for my tastebuds!
Noah is now 2 years old and his allergies are still severe and life threatening. We have just recently trialled more alternative therapies with no success unfortunately and keep in regular contact with our Paediatrician and Allergist. While I really wish Noah did not suffer from life threatening anaphylaxis to egg and dairy I am in many ways very grateful for our experience. It has certainly made me a better mother and I think a better person. It has meant that we have been put in touch with many wonderful organisations and people such as ABA, FACTS, Gaia’s Garden Playgroup and other attachment parents. Noah and I now have many treasured friends through these organisations as well as other families who have had similar experiences. It has been an amazing journey that is far from over. Noah is still a chronic waker at night which I could live without but I still love the close contact of breastfeeding and co-sleeping. I feel that Noah and I now have a special bond. People sometimes say to me “Noah is going to owe you when he is older” but I don’t agree with them. It has been my choice and my honour to parent him in this way. A week ago today Noah had an accidental exposure to egg and had a severe anaphylactic response which could have cost us his life. Unfortunately my husband was away and in those agonising moments as I waited for the ambulance I thought if the worst happened I would never regret those many nights of us up alone feeding, I would be so grateful for co-sleeping and attachment parenting. I would never regret being a stay at home mother or wish I had pursued my career. Children are a gift! I used to work with children with life limiting conditions and I know how many of those parents would have loved the opportunity to have a child that wanted to be fed all night, how blessed I really am. It is stressful having a child with so many allergies but at the end of the day it is only food and there are far worse things.
FACTS ABOUT FOOD ALLERGIES
Up to 40% of Australian children are affected by allergies some time during their life. Allergies are on the increase in Western countries, having approximately doubled in the last 25 years (ASCIA 2002)
A FEW COMMON SYMPTOMS OF ALLERGIES IN INFANCY
- Gastrointestinal: vomiting, possetting, frequent loose stools, windiness, diarrhoea or constipation, stomach pain, colic, feeding difficulties.
- Respiratory: nasal stuffiness, sneezing, coughing, nose rubbing, hiccups, sniffing, frequent ear infections, croups or bronchitis, frequent colds, bad breath
- Skin: dry or cracked skin, cradle cap, rashes, eczema, hives, welts, itchiness, redness around mouth, anus or cheeks, cold hands and feet
- Also: poor circulation, Frequent urinary tract infections
(Minchen, M “Food For Thought” 1992)
FACTORS THAT CAN INCREASE THE RISK TO DEVELOPING ALLERGIES
- Avoid overexposure to any one food in utero. (It is still unknown whether the mothers diet in pregnancy contributes to allergy in the baby but if you are high risk best to avoid or limit these foods during pregnancy)
- If possible avoid early exposure to general anaesthetic
- Strong family history of allergic disease
- Delay exposure of the infant to formula or solids until over six months
- Exposure to high levels of dust
- Passive exposure to cigarette smoke
- Exposure to environmental pollution
- Exposure as a child or infant to some indoor pets (eg cat)
FACTS – Food Anaphylactic Children Training& Support Association. A National support group. 21 Robinson Close, Hornsby Heights NSW 2077
Ph: 02 9832 7072 or 1300 728 000
VAIS– Vaccination Awareness Information Service
Ph: Susan 3893 2323