To start this story I really need to go back to the beginning and give you the history of Abbey's life.
She started out as a very chilled out baby for the first few days. But she did have jaundice so we expected her to get a bit livelier. By the end of the week she was screaming lots at night and waking every half hour to an hour. She was also doing lots of spitting up. At first we didn’t think much of it she was only a tiny baby and they often suffered from colic. We expected it to get better…it didn’t.
When she was 2 months old I saw a doctor thinking she might have reflux. They suggested I try putting some rice cereal in her milk and see if that helped. That afternoon I expressed and added a little bit of rice cereal to my milk and fed it to her. That night was one of the worst of our lives!! She started spitting up like crazy and she was completely inconsolable for 4 hours until she eventually passed out from utter exhaustion. I was in tears feeling so bad for her that she was in so much agony. It was awful! We never tried that again!
We still didn’t really think much about her spitting up and screaming other than that it could be reflux. I tried raising her mattress on a 45 degree angle, burping her lots throughout feeding and holding her on a 45 degree angle while she fed but nothing improved it.
She was still 2 months old when I took her to see my chiropractor as I had heard that they can often help colicky and reflux babies. He checked her over and she was pretty much fine everywhere, but he suggested I cut dairy out of my diet to see if there was an improvement. There was! He also suggested not to feed her any soy as she might have a milk protein allergy which is common in babies and soy also can affect them. The improvement wasn’t a miracle cure but things did seem to be a little better for a while. I just found it really difficult to not eat dairy and I slipped up heaps.
When she was 4 months old I thought I would try her with solids thinking that maybe the night time screaming was due to being hungry. It’s so hard to know if I was feeding her enough with breastfeeding. We started with rice cereal and things went from bad to much, much worse! She basically wasn’t sleeping at night, and she was spitting up so much she was soaking 6-8 spew cloths a day and needed to have a change of clothes often 3 times a day. She also got really bad diarrhoea and would have poo explosions where the poo would end up all the way up her back and into her hair. It was bright green in colour and was a bit mucusy. We stopped that after looking on the back of the pack and realising it had traces of dairy. I bought another brand without dairy but that didn’t help anything. Things just got worse every day. She even started all the screaming during the day. After a week we stopped the rice cereal. Over the next two months we tried different foods on and off but everything just seemed to make her spew more and scream worse at night.
By the time Abbey was 6 months old I was a complete mess! She was usually ok during the day, but come night time she was a changed baby. She would go to bed at 6 most nights but then always wake half an hour to an hour later and then scream and scream and scream. This usually lasted till 11 or 12. Then once she finally fell asleep out of complete exhaustion she would still wake me between 4-10 times. 4 was a REALLY good night and 10 was the most common. She couldn’t sleep any longer then a 2 hour stretch and she would often have a few hours of inconsolable screaming. I was totally and utterly exhausted!
I started seeing doctors again and was going every week. The first time she had an ear infection so we thought that was the problem. She was given amoxicillin and reacted REALLY badly to that! She couldn’t even sleep 10min straight without waking in obvious agony. She got diarrhoea really bad and an awful nappy rash. By day 5 I couldn’t handle it anymore so stopped giving it to her. We saw the doctor again and he said it sounded like she had reflux but he didn’t want to prescribe medication just yet. He wanted me to try raising her feeding position again to see if it helped. It seemed she did a bit better for 4 days but then things got bad again.
I saw a different doctor and while we were there Abbey did a massive projectile vomit and the doctor said it seemed like she had reflux. (what everyone was telling me) They prescribed Abbey some medication but it made no difference at all.
A few days before she turned 7 months I decided to take her back to my chiropractor as I had heard that he also did allergy testing. I brought along a sample of my breast milk, some cows milk and some corn as I had been feeding her a baby food jar with corn in it and she had been spitting up extremely bad and screaming even worse. Well the test was done by surrogate muscle testing. http://naethawaii.com/muscle-testing/ All three samples showed that she was allergic or intolerant to it. When I got home i got Reuben to help me with the testing and we tested food after food and it seemed she was intolerant to almost everything! I decided to immediately give up breastfeeding and tried to feed her a formula designed for babies with protein allergy. She hated it and refused to drink it. At 1am the next morning after she hadn't eaten anything i decided to just go with the goats milk formula i had in the house. She gulped it down! The next morning we tested it and are still thankful to this day that she can handle it! It is very unusual to have a milk protein intolerance and be able to handle goats milk as the proteins are very similar. But we aren't complaining!
Over the last 6 months we have made a few mistakes with the allergy testing and have realised she often has build up reactions to food too. We will do the allergy test before we feed her something and it will test fine but then we will notice the spitting up and screaming starting again and redo the test and it will say she is allergic to it. We have still had heaps of reactions. Especially to food she picks up off the floor. Even the tiniest amount can cause her to react and sometimes she doesn’t even have to swallow it.
But now we finally have answers to all of our questions. I am so thankful that we decided to go to Princess Margaret Hospital to see an immunologist who diagnosed Abbey within 10 minutes of being in the room. Her classic list of allergies and her symptoms didn't leave much to the imagination. Before the diagnosis i already guessed Abbey had FPIES but getting it clarified by a professional was a great feeling and knowing that we are going to get help from now on is also really nice. I was a bit scared that they wouldn't diagnose her as she has never had the violent vomiting reactions to food and that is usually the main symptom. But FPIES is still very unknown and doctors are only now slowly finding out all the different variations of it. Abbey has vomited a few times from her reactions but her symptoms are mainly the diarrhoea, spitting up and non stop screaming in pain.
So there you have it, a summary of Abbey's first year. Now if you are interested stay tuned as I wait to hear from a dietitian and we start with food trials. Although a few weeks ago she had 6 foods that were safe for her - wheat, apple, pumpkin, cauliflower, honey and sugar. After a few bad reactions in a row her stomach is a mess and she is sadly back down to none being safe anymore and has been living off a diet of only goats milk formula for the past 2 weeks. I am terrified to try anything new, as i know we will lose lots of sleep and worse of all Abbey will probably be in a lot of pain but i am really hoping we can add more to her diet.