After a five-night stay in hospital, which I talked about here, Max (and I) came home yesterday. It was an absolute relief to be back with Dylan and Alexandra and we got back just in time for a trip to the park before bed.
On top of his CDH (congenital diaphragmatic hernia), Max now has a diagnosis of F-PIES – food protein induced enterocolitis syndrome. This essentially is a condition whereby babies/children have a severe reaction to certain foods. Rather than have a rash or any external symptoms, they are affected internally.
Max’s symptoms that we noticed were: becoming pale and lifeless and white loose poos. He also had a low temperature of around 35 – something which he had when he was in hospital after birth too, acidosis, dehydration and was essentially presenting the symptoms of sepsis which is why they started treating him for an infection at first. Apparently all this, including the sepsis-like symptoms, is common for F-PIES as well as vomiting which he doesn’t seem to be hugely affected by yet.
People with the condition can be affected by all sorts of foods and some can only eat a handful of ‘safe’ foods. Hopefully Max is only affected by cow’s milk protein, although one in three also can’t handle soy. Many children grow out of F-PIES but there’s no way of knowing when or if this will happen.
Obviously Max starting to wean is a long way off, but generally the plan would be to try him on soy at some point and then if he tolerates that begin to introduce dairy into his diet. Best case scenario is he tolerates it and can grow up eating a normal diet. Worst is that he’ll have to avoid certain foods forever (but as the doctor pointed out, it’s quite lucky to have a condition where the cure is to simply not eat something). There is no medication which can help from what I’ve read, doctors simply have to treat any symptoms children present with when they’ve had a reaction.
While I’m still expressing milk for Max, I have to avoid dairy (the dietician said I could potentially eat soy if I wanted to, but I’m cutting that out too just in case as one in three seems a high number!) as even the small amount passed through breast milk can be harmful to him – although it was the higher amount found in formula which triggered his reaction on Friday. He’s also got special formula so if he needs top ups or I decide to stop expressing then he can safely have that as it’s made without cow’s milk proteins.
I’m sure we will document his F-PIES journey along the way as we know this is just the start of a long road – and weaning won’t be as simple as it was with his big sister Alexandra. But at least we have a diagnosis now and we can keep him well now we know why he became so poorly.
Harriet, Alexandra and Max x