The ‘beast from the East’ brings the term housebound to a whole new level; not having been able to take Finn to any baby sessions and classes, erm, ever, although incredibly lonely has been vaguely manageable and cemented by my high levels of anxiety at the thought of him becoming ill. His constant sickness was enough to assure me that actually I was doing right by him, and so were the doctors in advising me to stay away…but it got to the point that he was so sick anyway, that I wondered if being totally isolated was at all beneficial. You start to realise that although you might have avoided ‘Monkey Music’, even sitting Finn in the supermarket trolley, him touching the handles (that 15 other toddlers ridden with colds and bugs might also have touched) is enough to be an ‘infection risk’ in itself and so essentially, not getting sick, is a virtual impossibility. For a while I would meet other mums for coffee or host playdates with the condition that all present had to be declared fit and well in order for us to meet, but Finn’s second (actual) birthday brings with it a whole new issue that we hadn’t foreseen: boredom! His malnutrition by January had got to such an incredible level that in my attempts to see friends and socialise Finn, following an appointment one day I decided to be brave and do something nice for him, and a friend and I took her twins and Finn to a playgroup. Finn had his tube feed running in his backpack, we had just got into the building, taken shoes off, undressed the babies when a mum and her toddler ran out of the room with the little one projectile vomiting- the mother declared the toddler had just come down with a sky high temperature and had begun to be sick, profusely apologising because to normal mums, not hospital mums, but to normal mums, it’s simply not nice for your child to get a bug- it’s sad to see them unwell and quite frankly inconvenient for everyone to catch it. For me, however, and Finn it is nothing short of catastrophic! I cannot begin to tell you how bad Finn was as at that point, so incredibly thin and prediagnosis (of Eosinophilic Esophagitis) we were hanging by a thread, we felt, with him being out of hospital. I was trying to be brave and do something nice for Finn taking him to a playgroup when we never go anywhere (literally it’s got to the point where a hospital appointment is actually something to do that week) only be smacked in the face by reality when we happened to be so unlucky that just by chance this child had fallen ill the day we decided to attend. Well, I cannot begin to tell you the level of panic that overtook me! With a sharp inward breath my immediate reaction was to try to get out, grabbing Finn I turned to open the door which had been locked behind us to keep the children safe inside. Frantic and searching I cried out pathetically and desperately to the lady running the group who must have thought I was absolutely insane and ended up hiding in the toilets with Finn until the lady with the sick child had managed to get him into the buggy and out of the building to head home. It might have been a panic attack I don’t know, my adrenaline levels were through the roof and honestly, I am very aware that this is not a normal way to behave and I must seem like some sort of nutter but the knock on effect of Finn getting yet another bout of gastroenteritis just didn’t bear thinking about and I then felt guilty and on the verge of tears both for putting him at risk and quite embarrassed and shocked at how much I was affected by it.
Well, there was absolutely no way we could stay- said child had just spent an hour in the playgroup, touching every toy in sight, probably putting toys in his mouth, wiping his nose, touching toys again…it’s like over time I have developed a sort of UV vision and I can spot bacteria on every surface before I even begin to think about sitting down. I know, full well to the average person reading this it sounds so incredibly over the top and so so strange, but I am not joking, this is how I have had to be since bringing Finn home and admittedly it develops into obsession but it has been absolutely necessary. Every decision I have made, I have tried to make in his best interests and to get him to the point of thriving. Mine and my husband’s hospital admittance ritual is to wipe the cot he is given (every cot bar) clean with Clinnell antibacterial medical wipes before Finn is allowed to get in it; we’re admitted because he’s sick, the last thing he needs is to catch something from a previous patient, or God forbid MRSA! You’d be surprised, or not maybe, to know that when I wipe the hospital cot and all of the surfaces in the bay that he has been admitted to, the wipes are all to often brown with grease and dirt…
In January, Finn was transferred from the Royal Free to Great Ormond Street for an Immunology review to check for any immune deficiency or autoimmune disease; thankfully the results came back fine and we have no further follow up. We have been given the all clear to treat him like a ‘normal’ child especially now that the PEG tube has allowed for him to gain some weight and become a little stronger, and from the spring (once this year’s cold and flu season is out of the way) we have been advised to begin taking him to groups and sessions for toddlers, after all, his development overall and socialisation is just as important as his health! As we had initially planned to, for this reason we will also put him on the waitlist to enrol him part time in nursery or preschool, probably, from the Autumn. Since January Finn has grown from 8kg to 9.6kg- he’s stronger and as a result this week he has been to ‘Bears in the Park’ and ‘The Story Hat’- this activity, ordinary to some, has been the biggest breath of fresh air for our family to have been able to do simply day to day baby things! When he starts nursery I might even invest in an Interior Design course!
I found a link recently that is a really simplified explanation of Finn’s diagnosis: https://www.allergicliving.com/2017/02/16/eoe-eosinophilic-esophagitis/ I am really, really hoping that Finn might be one of the 85% of paediatric cases that respond when the top 8 allergens are eliminated from the diet. He had got so sick by January that we had no option but to treat the EOE as aggressively as possible. Whilst on a high dose of PPI medication (24mg daily of Omeprazole) designed to treat reflux, inflammation and neutralise stomach acid, Finn signficantly, has also been on an elemental diet since 5th January- this means no food at all! He is exclusively on an elemental formula (Neocate Junior) that is entirely nutritionally sufficient, through his tube and he’s just allowed water to drink. He would be allowed to drink the formula- you can get strawberry and vanilla flavours- but he just won’t because it tastes so disgusting. This, at the moment, is a short term plan to bring his eosinophilia into remission, and hopefully we will have a baseline from which to start to reintroduce certain foods. We are not sure yet whether we will go slowly and introduce perhaps three foods at a time on the doctor’s instruction and see how he goes every three months, or whether we will reintroduce all foods except for the top 8 allergens, so Finn will maybe be top 8 free (dairy, egg, soya, wheat, peanuts, tree nuts, fish and shellfish) as well as any of his additional IgE allergens. I’ve mentioned before that Finn is allergic to avocado, apparently if you are allergic to avocado you are likely allergic to banana, kiwi and latex…so you can see how quickly the list of foods necessary to avoid becomes longer and longer. EOE is a complex disease that spans immunology, gastroenterology and allergy. The reason EOE is categorised as an allergic disease (although complicated because not all of the foods that might affect Finn’s esophagus are necessarily IgE allergens) it is categorised so, because when you take away the offending foods or environmental triggers- the condition gets better and all but goes away. Finn’s immunology review, although not showing any significant immune disease, did show that his total blood IgE (his body’s allergic response) count (normal range 1-52) was over 1000, he also had raised platelets and raised blood eosinophils which points to inflammation in the body. Interestingly, something we didn’t know before is that he is also highly allergic to wheat. This has never been eliminated from Finn’s diet before, it may be such a huge trigger that we are hopeful that it could be that simply by taking wheat of the equation when he’s back onto eating normal foods, we might see him do very well but we know that it is probably not going to be quite so easy. Finn also recently had a brain MRI which thankfully came back normal, although we had the EOE diagnosis just before Christmas, Finn had got so poorly the paediatric team wanted to rule out any ‘central cause for vomiting’ and so they were looking for tumors, bleeds or hydrocephalus (fluid on the brain). The investigations, although absolutely necessary, have been a relentless barrage of panic inducing horror, constant admissions, constant pain and medicalisation of life for Finn. My husband has been off work supporting me, and we’ve been getting through it as a family. We reached breaking point after Christmas where we and the doctors still felt clueless as to why he was continuing to lose so much weight and why we could not (and still cannot) stop him vomiting…we have never felt so close to losing him and honestly if we did not have some time together to work through this, I think one of us might have got to the point of nervous breakdown.
Then a month or so passes. He has gained 1.6 kilos and jumped two centiles- he is happier, stronger, bigger. He hasn’t had a cold, he hasn’t had a chest infection and we can breathe again. He has also been put on a medication called Montelukast which seems actually to be the only medication we have ever seen improve Finn’s health- he used to pretty much have asthma or bronchiolitis symptoms every two weeks but since we started this there’s been no sign of it- it also helpfully, happens to be a medication also used to treat EOE! Finn was referred to the specialist Gastro team at Great Ormond Street for his EOE and we had our first appointment last week- the most positive appointment we’ve had in a long time: the doctor truly thinks things can only get better from here. Recently a friend came over and she hadn’t seen Finn since he was incredibly tiny- she told me that what I have written about and what Finn has been through make him sound like a very sickly child, and she didn’t know what to expect when he saw him. Then he ran around the house holding her hand, dragging her from room to room trying to talk, showing her things! It made me sad to think that I have cast the image of a little boy that makes him appear so much less or more frail than he actually is, because despite all of this, we have a little boy who is in every sense of the word completely normal. He’s sweet, he makes us laugh, he’s caring, he’s naughty, he has tantrums, he gets told off…but he vomits, without fail, every single day (often more than once) and that’s just our day to day situation as it always has been. Once we get this controlled, he will eat, and drink and thrive, we hope, in his health just as much as he is in his mind and we cannot wait for that to be his and our reality! In the mean time, it’s okay, we will do what we have to do to sort this out which means at the moment every 8 to 12 weeks Finn must have an endoscopy to take further biospies, check the cell count of eosinophilia under the microscope per high power field (his first diagnostic scope showed 45 and more than 15 is active disease) and hope that we can get it into remission. Each time we will trial foods- taking things out of his diet, putting things back in and watch and wait to see what his cell count does. His second scope is next Wednesday at Great Ormond Street- he has to be admitted for possibly two nights, he will have an endoscopy and sigmoidoscopy looking for eosinophilia all the way through the digestive tract (they may not be just in his esophagus) and we will make a new plan, based on the results, from there and we will continue to live like this, from scope to scope while we hopefully make progress! In the mean time, we have some time together as a family; we’ve had an offer accepted on a house and we’re moving back to our favourite area, we are making travel plans for the year ahead and we feel so, so much better now that we have even the vaguest idea of what we’re dealing with and in the knowledge that eventually things are hopefully going to be okay! Be thankful every day for your health, it is simply the most valuable thing you have.