Home With A Diagnosis

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

In Hospital Again!

Just when we thought we were settled, we had our lovely little family together and our biggest challenges were night feeds and nap times, poor Max is now back in hospital.

It began last Tuesday when he had his check up, where the doctor said although he was putting on weight it wasn’t enough and recommended us mixing 70ml of my milk with 30ml of formula at every feed. We did so and almost within a day began to feel he was much more unsettled. Then his nappy products didn’t look quite right. And then by Friday his feeding was all over the place, he was quite lethargic and by the evening he had gone really pale.

I’d sought advice from the health visitor who said it could just be the switch to formula but when Dylan came home he said there was a massive difference in Max’s appearance from that morning so we called out of hours and went for an appointment there, which eventually turned into an admission to the children’s ward at our local hospital (ten minutes away from our house compared to an hour for the women’s/children’s hospitals he was in previously).

That night was terrible. He’d lost 11 ounces in three days and at one point became unresponsive when they were trying to do a lumbar puncture on him. They pumped loads of fluids into him, some medication as he was severely acidic and did about a million tests.

Then they called the intensive care team to come and see him for an assessment, with it being touch and go whether he would be moved to another hospital with an intensive care ward. Luckily he’d responded to the fluids and meds so they said he could stay at our local hospital with the specialist teams from the hospital where he had his hernia surgery advising the doctors here.

He restarted feeding, small amounts at first which he wasn’t happy about, and has been gradually gaining weight each day. Currently (Tuesday) he’s still having lots of tests to determine if there is an underlying condition relating to his kidneys, liver or metabolism but he’s just come off his antibiotics because there’s no clinical evidence of infection.

One of the theories they’re working on is that Max has had a severe reaction to cow’s milk protein (there is a much higher amount in formula than cow’s milk which would explain why he became so poorly after starting the formula), so they’ve asked me to stop having dairy and they’re also doing some tests relating to that.

If he does have that then, rather than growing out of it like some children do, because he became so unwell at such a young age it’s possible it may be a life-long allergy.

He is doing well and is very alert and wanting to feed a lot which are all good signs. Compared to the pale little lifeless boy we had on Friday, he’s once again proved how strong he is and bounced back. We’re just hoping for an answer soon so we can take him home again as another round of this is not what any of us wanted!

Harriet, Alexandra and Max x