Having just finished reading Fed Up I felt compelled to speak to you - your book struck such a chord! For two years now we have been battling with our daughter's health and behavioural problems and have been fobbed off left right and centre. It was such a wonderful relief to speak to you and read of your experiences and know that we are not alone in this.
Right from the start Emily Rose was a 'difficult child' - never slept for longer than two hours at a time at night and had only two short catnaps of about 30 minutes during the day. She cried a great deal, wanted to be held constantly and often woke up screaming. Clearly this was going to be a challenge. After four months the sleep deprivation really hit home and we began doing the rounds of the doctors in an effort to establish the nature of the problem. We had no answers apart from maybe it's colic, watch your diet, cut out brassicas, fruit juice, yellow stoned fruit, onions and garlic. No one mentioned cutting out dairy, tomatoes or tea!
We thought we ate healthily - no pork or processed meats (having worked at a food company and seen what goes into sausages, ham, bacon etc, we came off them in 1994), drank herbal tea, didn't drink coffee or fizzy drinks, had very little alcohol, didn't eat much in the way of processed or preprepared foods, don't eat take-aways and had a high proportion of fresh fruit and veg in our diet with little in the way of fried food. At one stage we stuck to the Fit for Life Diet for at least 18 months. We struggled on and wondered how it was possible to have a baby like this - did parents survive such an experience without going insane or committing infanticide? Here we were, both with post graduate degrees, fairly competent people, reduced to grovelling wrecks - the baby running our lives. Thank God, my husband David was very supportive I can't imagine how much worse it might have been had he not been there for ER and I.
During her first nine months, Emily Rose had three ear infections and was put on antibiotics. Although we do not believe in antibiotics we were desperate enough to give it a go. The problems with her sleep continued. We insisted on a referral to a paediatrician in an effort to establish whether there was a physiological cause. The paediatrician was most unsympathetic, of course ER was as good as gold there and didn't exhibit her usual crying or fretting, she gave Emily Rose a cursory examination and pronounced her a 'bright' baby (began to crawl at five months and proficient at getting around by six and a half months, sticking her hands into everything within reach). Her whole attitude was 'look, I have a three year old and he still doesn't sleep well, so just learn to live with it!' We were referred to [a health department facility for mothers and babies] and had a day stay as well as two home visits - the upshot of that was we were told we had a 'naughty baby' who should be taught to sleep (controlled crying etc and left in her cot for up to an hour at a time, very distressed, crying and screaming). I couldn't believe that at five months a baby could be naughty (it went against the grain of all my psych training and experience) and the controlled crying etc was nearly the undoing of me. We stopped using [the health facility] or their advice - I refused to be made to feel guilty and did not like the implication that we were bad
Finally when Emily Rose was about 11 months I contacted the Government Audiologist and asked for his advice and a referral - she had just blown a fourth ear infection and I was not satisfied with the doctor's comment that this is normal for young children - 'they have an average of 13 infections in their first year!' We were put into contact with a GP who specialises in distressed infants and it was the first turning point. This doctor's hypothesis is that some infants from families with histories of allergy/intolerance exhibit sensitive tissue which overreacts to irritants. This view is unfortunately not well accepted in the wider medical circles here in Perth. However, we thought it made sense in our case as we both have history of sinusitis and I am subject to migraines. Emily Rose's reflux caused irritation of her oesophagus and the lower end of her Eustachian tubes setting up an environment ripe for infections. It was a relief to find a reason and to be able to begin to treat the cause rather than the symptoms. Whilst we are very grateful to [this paediatrician], it is my personal belief that she does not emphasise the food intolerance aspect enough and tends to concentrate on the antibiotics and grommet course of treatments.
On her initial visit, Emily Rose was given a tympogram and we found that both her ears were effused - obviously she had been in significant pain for most of her life. She had probably had more ear infections than we were aware of as she exhibited asymptomatic otitis media. No wonder she did not sleep well, if she lay down for any length of time, the pressure built up in her ear drum until she woke crying/screaming. More antibiotics, and we were advised to move her off milk based formula for her complementary feeds to a soy based formula. I breast fed her until she was just under two but we had to start complementary feeds at about nine months - I think I was too exhausted to continue on my own. We used soy formula for about four months during which time her bowel motions became increasingly loose. Eventually we agreed to the grommet route because we did not want to continue with antibiotics, she was looking ill and peaky with dark circles under her eyes, and when read stories about children going to bed would clap her hands over her ears (we took this as an indication that she associated bed with pain). Within two weeks of her operation the difference in the child was astounding - she gained some colour in her face, the dark circles receded and she began to pick up weight. parents!!
However, her irritability continued and in fact began to get worse. We began to explore whether her behaviour was in any way related to food and took her for vega testing. We were astounded by the results: wheat, dairy and soy intolerant as well as sensitive to salicylates. Controlling her diet more closely produced even better results. In May 1998, when we took her off the soy and reduced her fruit intake, her irritability subsided, the runny nose also began to clear and she began to look healthy and rosy!
Over the last few months we began to slowly reintroduce wheat and dairy into Emily Rose's diet. She loves her rice milk and is a good eater when she is well and has an appetite. She eats a broad range of fruit and vegetables and is not what I would consider a fussy eater - apart from not liking chicken! On reflection I realise that we did not have enough information about food chemicals such as salicylates and this is where we have gone off the rails again. Thinking we were doing the right thing we introduced cranberry juice into her diet to provide her with vitamin C and gave her crushed almonds for calcium.. She loves olives and will go the fridge to help herself to them. We tend to eat a lot of home made tomato sauce on pasta and rice and lavishly pour olive oil on our steamed veggies and salad! We made sure Emily Rose had at least two - three pieces of fruit a day: watermelon, apples, grapes, nectarines, pears or banana.
The slide into the intolerable behaviour has been so insidious that we did not make the connection with food. Emily Rose has become increasingly obstructive, obstinate, defiant and plain horrible. This is more than just the terrible twos! The tantrums started about six weeks ago and are unbelievably dreadful - she will cry and thrash about for over an hour and on one memorable day had three tantrums! There is no identifiable behaviour which triggers the tantrum nor a particular time of day when they occur. What upsets us the most is the fact that she tries to hurt herself during the tantrum either head banging or biting her arms, wrists and hands causing bad bruising. Time out in her room was out of the question as it resulted in bruises and egg sized swellings on her head (banging her head on the closed door) as well as split lips and blood all over the show. We have learnt to sit and restrain her, all the while talking her through the episode. Very debilitating for all concerned.
We seriously wondered about the wisdom of our even considering having a second child when we obviously couldn't handle one! Needless to say David and I are both exhausted and somewhat depressed - our life revolves around how ER is behaving. Is it going to be a good day or one of those horrors? We don't seem to have any time to ourselves as we spend so much time and effort trying to deal with Emily Rose. She continues to be difficult to get to sleep - it can take us one and a half to two at night to get her to go into a deep sleep. We have very few uninterrupted nights - sometimes she will only wake once, other occasions it is at least three or more wakings. None of our friends seem to have these difficulties with their children. My sister has a dream child - you wouldn't even know that her daughter is in the house. Why us ???? As migrants we have no family support or the gaggle of houseservants we had at home. My greatest desire is to have a whole weekend of uninterrupted sleep whilst ER is farmed out somewhere!!!
The light dawned as I read Fed Up - this child is very sensitive to salicylates and we need to cut out all those foods. I now have enough information on what foods contain salicylates to begin to do this in a logical and constructive way. Previously when we went for the vega testing we were just told to cut out certain foods but not given enough information as to why or how. I am now very motivated to start on the elimination diet and finally establish exactly what her problems are
... David has said he will also do the diet in an effort to sort out his recurrent sinusitis so this will be a family effort.
We are on day two of the elimination diet and I must admit that I am finding it hard going especially as we are also dairy, wheat and soy free. Emily Rose is already so much better, not as good as she could be, but an improvement. Since withdrawing the cranberry juice 10 days ago we have been tantrum free - just crying fits which are easier to deal with. The other great thing is that her snotty nose has cleared up for the first time in months. She is still very irritable and easily frustrated but I am sure that will improve. We just have to hang in there for the next three weeks and will challenge with wheat first because I reckon cooking will become that much easier if we can have wheat! - Simone