Max weened like most children do, we started to transition him onto solid foods from about 6 months old.  We bought a baby food maker and made sure we were making him fresh and nutritious meals every day.  He accepted us feeding him this food, but always still wanted to have his baby milk from his baby bottle.  At this stage we knew nothing of his Autism of other conditions, but we could already tell that something was different with him compared  to most other kids.

As he grew older Max became more and more difficult with food.  Most children are said to have a fussy stage around two years old, where they become very picky about what they eat, but they will normally grow out of this.  With Max he was gradually eating less and less food and in the end he was only taking a spoon or two and only really doing this because he knew he had to eat something to then be given his milk.  Conditions around his eating also became very regimented to a pretty extreme level.  Towards the end of his period of eating he would only eat if at home, he had to be seated in his chair at a specific spot at our kitchen table.  He had to have one specific cartoon on the television and it had to be at a specific point.  The food had to be served in a specific bowl and fed to him using a specific spoon.  It had to be fed to him by his Mother and no one else was allowed to be in the room, not even his Dad.  By this point the only food he would eat was a combination of mashed potato, cheese and baked beans.  All of these had to be of a specific variety, if we were to change the brand of beans or cheese, even to something almost exactly the same, he would instantly pick up on this and push the bowl away and refuse to eat.  This meant that taking Max away from the house for anything more than a couple of hours became impossible and even his Mum couldn’t go away for more than a few hours as she was the only person he would take food from.

Throughout this period Max was becoming more and more reliant again on his baby formula milk.  This too he was very particular about, it had to be a specific brand and also number, say we were to try and change from Cow & Gate to Aptamil, or from a 3 to a 4 of the same brand, he would detect this and refuse to drink.  The milk had to be of a very specific temperature and given to him in his original baby bottles.  Only certain colours of these baby bottles were acceptable to him and even then the correct colour would only be accepted if it had the correct animal picture on the bottle.  If there was any condensation or drops of liquid inside the teat or on the outside of the bottle he would not accept it.  Max would take his milk in school (he attends a fantastic special school) from a very trusted teaching assistant only.

Eventually on 13th February 2022 Max stopped eating food completely and became totally reliant on his baby milk - this was the one and only thing he would take, no food of any kind, no water or other liquids, just his baby milk.

We were at a loss as to why this was all happening.  We’d talked to some other parents about fussy eating and looked at some Facebook groups about picky eating, but Max’s level seemed to be far beyond anything we could find.  One day a speech and language therapist who had been doing some sessions for Max said to us she had just been on a course where they had talked about ARFID and asked us if we had heard of it as she thought that Max showed signs of this.  We hadn’t heard of it at this stage, but rapidly set about researching it.  (We got a lot of information from ARFID Awareness UK and joined the Facebook Group ARFID support for parents & carers in the UK/Ireland).  It seemed very much that Max had ARFID so we contacted his paediatrician, expecting him to want to assess Max and then give us an appropriate course of therapy / treatment to help him deal with this.  To our surprise he said he was happy to confirm ARFID based on our telephone conversation and add it to Max’s list of diagnoses.  We then said to him “that’s great, so what do we do now?” and were even more surprised to be told that in the area we live (West Sussex), there is no support for ARFID.  We asked about CAMHS as we’d read about this and were told we could request a referral but would be put on a waiting list for at least 18 months and even when we did get to see them they wouldn’t be able to offer any support, especially to a non-verbal Autistic child.  We said to our paediatrician that in that case we were going to go away and find somewhere that was able to offer support to Max and we’d be in touch and expect him to refer us to wherever we found, which he agreed to.

On 1st February 2024, 1 year 11 months and 13 days (not that we were counting!) since the last day that Max ate any food, the day of the surgery came and we set off bright and early at half past five in the morning to be at the Evelina for just before 8am.  At this point we were using a wheelchair to move Max around as he would refuse to walk and was now getting too big to easily carry long distances.  He sat in the wheelchair quite happily through the hospital up to the ward.  We spoke to the nurses on admission and asked if they were aware of Max’s special needs and that the Consultant had requested a side room for us.  They confirmed that this was all on the surgeons notes.  They were friendly, but quite dismissive of us at the same time and told us that initially Max would be allocated a bed on the ward.  We went to this bed and Max was reasonably happy playing here as it was new to him.  A doctor and anaesthetist came round and asked us a series of questions and we filled in some consent forms.  They asked if they could put a heart rate monitor on Max’s finger, no chance he was allowing them to do that!  We were first into surgery that morning and about an hour after arriving the anaesthetist came back to sedate Max.  He administered him a dose of Ketamine by an injection (we had to hold Max down while this was done as we had no way of explaining to him what was happening and wouldn’t just allow someone to give him an injection).  This had an immediate effect on Max, he went white, his eyes rolled back in his head and he started to twitch.  This looked really concerning to us, but the Anaesthetist said it was not that uncommon, and after Max settled down a bit he was wheeled down to the preparation room outside the operating theatre.  We walked down with him and when they took him in we went back up and waited on the ward.

Three doors away from recovery we could hear Max screaming.  We rushed in to find him wrestling with three of the staff in the recovery room and absolutely besides himself (imagine if totally unexpectedly to you someone jabbed you with a tranquilliser and you then woke up in an unfamiliar room, surrounded by strange people, with an IV line in your hand and a plastic tube sticking out of your tummy!  When you think of it like that, it’s no surprise that he was in this state).  Even seeing us didn’t really calm Max down.  He was trying to pull out his cannula - we told the recovery team there was no way that he would tolerate this and that it would have to come out.  They said it had to stay in.  About 30 seconds later they gave up and removed it!  Max was pulling at his new PEG tube and screaming.  By this point it was taking three of the recovery staff, both of us and the anaesthetist to restrain him.  The recovery team said they weren’t allowed to use the PEG tube yet to administer any medication or sedation to Max, but about 2 minutes later they gave up on this idea and gave Max a shot or Oramorph through his PEG.  Almost immediately this sedated and calmed him.  Everyone was in a state of shock at this point, the anaesthetist who was fantastic said that Max had come round from the anaesthetic almost immediately, much more quickly than they would have expected.  We spoke to him about the ward situation and he immediately went up there and told the ward staff that Max must have a side room and he wasn’t being released from recovery until this was arranged.  Thankfully they actually listened to him and a short while later Max was wheeled back up on his bed to a side room.  Seeing and hearing Max in this state was one of the most traumatic experiences of our lives.  He’s normally extremely anxious about almost everything, and he had been in absolute terror at where he was and what was happening.

Back on the ward the anaesthetist and surgeon both visited multiple times during the rest of the day to check up on Max.  When he started to wake up properly he was much calmer in a private room with us there than he had been before.  To our amazement, he kept having a look at his new tube, but didn’t seem particularly concerned by it and didn’t try and yank it out.  The Consultant explained that the surgery had gone very well and the PEG was looking good.  We would be staying in overnight for observation and they would want to see him do a poo before we could go home (we thought this might be an issue as Max suffers from severe constipation).  Later that evening and perfectly timed for just after the shift change so that there was just a junior doctor on over night, Max was sick.  This was a major issue as the care plan post operation seemed to be based around the child having a cannula line fitted, which obviously Max now didn’t, and administering fluids through this.  Max wasn’t taking his milk at this stage and the doctor became very concerned about him needing fluids and us not being able to get them into him.  She was phoning other doctors to try and get advice for what to do in this situation, but seemed to be at a loss.  Thankfully about 90 minutes later Max drank some milk and we were eventually given permission to give small amounts of fluid and painkillers through his tube that evening.  We spent the night sleeping (well not sleeping much!) top to tail on a kind of narrow sofa board next to Max’s bed.

The next day the consultant checked in on us several times, the nurses gave us some basic training on using the PEG, Max eventually did a poo and we were given the ok to take him home early that evening.  We were given a care package of various feeding syringes, dressings, medications etc to keep us going until our community nursing team came to see us at home.

(We’ve since followed up the issues we had in the Evelina with them and they’ve been very receptive to our feedback, they’ve apologised for our experience and have told us they’ve reviewed procedures for children like Max and adjusted things to hopefully avoid anyone in the future having a similar experience to ours).

The next day our community nurse visited and over the next couple of weeks trained us up on the use of Max’s PEG and the upkeep of it.  Max had a dressing between the external bumper and his tummy which we had to change everyday.  When doing this we had to gently clean around his stoma and once a week we had to “Advance and Rotate” his tube.  This involves releasing the external clamp, pushing the tube into his stomach by a couple of centimetres, pulling it back out and then rotating the tube.  This is done to try and avoid “Buried Bumper” where the lining of the stomach grows over the internal bumper of the PEG.  This along with the continual cleaning of syringes and preparation of batches of blended food to give Max added what seemed initially like a massive amount to our already busy daily routine with him.  For the first week we weren’t allowed to submerge the PEG site in the bath, so Max just had showers and we wiped him down.

Writing this we’re now seven months down the line from having had Max’s PEG fitted.  The daily upkeep and use of the tube, which at the start seemed a massive amount of extra work has now just become part of our routine.  For a long time Max would object to being given food through his tube (he does have a PDA profile and seems to object to most things that he hasn’t decided to do himself, even it they’re things he enjoys!) but in the last month or so he’s started to sit with us quite happily at meal times and even helps to push the plunger on the syringes.  We have had some issues with the PEG.  To start with the area around his stoma was very sore and we had to apply creams to it everyday and have dressings on for probably about three months.  Max has had a couple of infections, including a suspected abscess in his stomach, which burst and then oozed out around his tube and he’s required several courses of antibiotics.  This resulted in what looked like some fairly severe over granulation, we had to apply steroid cream to this for a few weeks and it eventually cleared up.  Recently we thought he was suffering from a buried bumper as we couldn’t get it to move when attempting to advance and rotate it.  But with some lubrication and extra pressure, under the guidance of a nurse from the Evelina we were able to eventually get it to move.  We also had to attend A&E with him a couple of months ago due to severe constipation.  He was then technically admitted for three days to the Royal Alexandra Children’s Hospital in Brighton, although they were very understanding and they agreed that staying in overnight would not be beneficial to Max, so we took him home each evening and returned first thing the next morning with him.  He was put on three different laxatives, which have worked to some extent but not fully fixed the issue (our dietician said what he was on ”should have cleared out an elephant!”)

So there have been a lot of things to get used to and deal with, but for us the benefits have massively outweighed all of this.  Our community nurses went into Max’s school and trained up some of his teaching staff to use the PEG and they initially gave him Fortini through it (this started out great, but he seemed to start developing a lot of gas as a result of this and started being sick at school most days, so we switched this to a blended diet in school too).  Max started coming home full of energy and wanting to play, whereas before, going all day at school with no food or liquids, he was coming home from school tired and exhausted every day.  When we’ve needed to give him medication it’s been simple to do this through his tube, before it would largely have been impossible.  We can take him out for the day or go on holiday without the fear that we’ll get somewhere and have to come back almost immediately because he starts refusing his milk.  Max can be a very active child and enjoys physical play and pressure to his body, we were initially worried that this would change with the PEG, and while we obviously have to be a bit more cautious around it, he still wrestles and plays with us much as before.  He’s able to have baths and go swimming with his PEG just the same as before it.  He still takes his Fortini from his baby bottles, but we can make sure that he is getting all the calories and nutrition he needs on a daily basis much more easily with being able to control what he takes through his tube.

The day came and once more we were up at 4am to get ready and drive into the Evelina in central London to be there for 0730.  On arrival Max recognised where he was and moaned a bit, but to our surprise he came out of the car fairly easily and into his buggy (he now has a large special needs buggy which he feels safe and comfortable in).  We went through the hospital and up to the ward and were taken straight to a side room.  We’d taken Max’s star projector lights and set these up to help keep him calm.  A play therapist came round and brought an assortment of sensory toys.  The nurse came round and took details as usual, they weighed and measured Max as best they could (no chance he was allowing any monitors on his fingers or toes though!)  The anaesthetist took longer to see us and sedate Max than we had been hoping, after about 30 minutes Max started to become a bit agitated and made it clear that he wanted to leave (he says “car” when he’s not happy somewhere and wants to go).  In the end we had to find a nurse and ask if they could see if we could get some sedation as Max was becoming very difficult to control.  The anaesthetist came to us about 5 minutes later with some sedation that she got us to administer through his tube.  She said this should start to work in about 15-30 minutes.  40 minutes later and Max was more lively than he had been before the sedation!  So we were given a second, different sedative to give him.  30 minutes later and still no change, so we were given a third sedative. Another 30 minutes later and still not much change (the anaesthetist said that she’d now given Max, who weighs 20kg, enough sedative to knock out a small horse!)  He finally started to become a bit tired and we ended up putting him back in his buggy to keep him calm. We held it back on two wheels so it was horizontal and rocked him in it until he went to sleep.  We then got some strange looks as we wheeled him through the ward down to theatre in his buggy on two wheels, laid back in the horizontal position!  In the theatre prep room I had to hold the buggy in this position (my arms were getting quite tired by this point!) while they administered some anaesthetic gas to him to make sure he was out properly.  Once this was done we finally lifted him onto a surgical bed and he was wheeled through into theatre.

We were then taken back up to the ward to be trained by a nurse in the use of his new button (not before we’d made it clear that we MUST be back down to recovery before he wakes up, which we were assured we would be).  Training completed and we were taken straight back to recovery and we sat immediately outside until Max was brought out of theatre about 10 minutes later.  We were then taken straight in and sat next to his bed until he woke up.  A further 10 minutes later Max opened his eyes, he looked around and saw Tracey and closed his eyes and went back to sleep.  He did this several times before waking up properly and we’re certain that without us being there in recovery, the first time he opened his eyes he would have panicked in the same way he did after his first surgery, so we were incredibly grateful for this.  We told the recovery staff several times that they would need to remove his cannula before he woke up properly and when they were happy they started to remove the bandages around his hand that held this in place.  Even though he had seemed to be asleep, Max obviously felt this as he grabbed the cannula and just ripped it straight out of his hand!  With us by his side though Max remained quite calm, such a massive difference to the recovery from his first surgery!

A little while later we took Max back up to the side room on the ward, when he woke up properly and noticed he didn’t have a tube taped to his tummy he became a bit upset (he’d become quite attached to his tube) but he gradually calmed down and we spent a fairly uneventful afternoon there until we were allowed to be discharged and go home at 1530.  We got a basic package of equipment to enable us to use Max’s new button at home until our community nurses supplied us with more, the surgeon popped in to see Max and he was checked up on regularly.  All in all a completely different experience to Max’s first surgery and so much more positive - thank you to the excellent staff at the Evelina and for listening to us after Max’s first surgery.

Since being home we found that Max was initially extremely nervous about allowing anyone near his new button and initially it was a two person task to be able to access it.  He’s gradually calmed down with it over a few weeks.  Upkeep of the button is different to his old tube.  We no longer have to “advance and rotate” his tube, but once a week we have to remove and replace the water in the balloon that holds the button in place.  The actual button itself needs to be replaced at least every six months (although as I previously said this can be done at home) and the extension tube that we fit to his button to feed him through has to be changed every week, but overall this so far seems a lot easier than what we were dealing with with Max’s original tube.

In the few months since originally writing this Max has had his button changed twice at home by the community nurses, the first time because the one that was originally fitted seemed a bit tight and the second time he developed a staph infection around his stoma.