I am starting to get very very frustrated with this whole FPIES thing. The fact that i can't do anything about it, the fact that Abbey can't eat any food at all and the fact that now she seems to be reacting to her formula again just sucks big time. I wish with all of my heart that i could take her pain away. I would be happy to have it for her. If only she could just catch a bit of a break.
It has been a very confusing last few weeks with Abbey seemingly not getting over her wheat fail. Although the mucus in her poo has stopped she is still doing very explosive runny poos every day and most of them cover her clothes as well. She has also been super grumpy and having random 10-40minute long hysterical screaming fits where i can't do anything for her. In between these screaming fits she does have happy times and also times where she will just whine and hang off me. I'm sure to lots of people this may just sound like typical toddler behaviour and tantrums but if you know Abbey, you will know that this is VERY unlike her. Also we know that once the offending food is taken out of her diet she goes back to her happy self.
Abbey has also had a bad cold and we all had a bit of a mild tummy bug. We kept putting Abbey's behaviours, poo and the few vomits she did down to these things and hoping she would get better soon. But nothing has been changing. Then on Friday after she had a pretty happy day i decided to add another scoop of powder to Abbey's formula. It hadn't even crossed my mind that increasing her formula amount would start to cause problems again. She seemed to be tolerating it fine. It was still very diluted but we were up to 6 scoops to 240ml of water. According to the tin she should be having about 11 scoops to that amount of water. On Friday i went up to 7 scoops.
On Saturday Abbey screamed/cried almost the whole day. She wouldn't let me put her down but wasn't very happy even with me holding her. This is when the thought that it could be the formula, first crossed my mind. It kind of all made sense. Straight away i went back down to 4 scoops so that i could be sure this was the problem. Abbey had totally lost her appetite though and over the course of Saturday and Sunday she only had 5 bottles.
On Sunday afternoon she finally started becoming happier and this morning her appetite is back. The only problem is that she is still having some random screaming fits where she is in obvious pain.
I can't wait for tomorrow to hurry up so that i can talk to Abbey's dietician and decided what we can do to help her or if there is anything we can do.
I have added a video of one of Abbey's screaming fits today. If you can't handle seeing a very distressed baby don't watch it! I wanted to add it so that i can look back on this and know that it wasn't all in my head and that something really was wrong. So often i feel like its all in my imagination. When we are dealing with the screaming it is awful and i can't imagine anything worse, but once things get better and she is happy again i always think, was it really that bad? or was i just imagining it all? I guess that is the good thing about being able to block bad memories. If we couldn't ever forget or fade out the memory of the bad things our lives would be awful!!