From the beginning

We have  4 children the older 3 now aged 24, 22 and 21 and  this blog is about my youngest son B who is now 14.

B was born a healthy 8lbs 3oz, although 10 days late.

I hardly knew I had him in the early days, all he seemed to do was sleep and he never really cried.

He did bring back a lot of milk even though breast fed though, and would often come up gasping for air red faced and choking and spluttering.

He got an all over rash by 3 weeks which at first they said was baby acne and then eczema when it spread and went very dry.

He had endless loud hiccups and botty burps as loud as a full grown man which saw him flinch as if startled by it, people actually didn't believe that noise was coming from him and I'm sure thought it was me using him as an excuse !

But otherwise quite a content and happy baby.

But he hated being put on his front, being held up in the air, any sudden movements or swinging, and loud sudden noises even from a young age, and was always an anxious child.

He always had trouble swallowing and would often gag or simply just refuse to eat well after the usual age for not liking lumpy food.

Mealtimes often were like a battle ground with him not budging one iota and me trying every trick in the book to get him to eat just a little morsel.

And yet at other times he would surprise me by eating well, there seemed to be no rhyme or reason to his peculiar behaviour.

When I mentioned to the health visitor that he had this habit of vomiting when eating and refusing food quite often she said toddlers always eventually eat, they won't starve themselves and not to worry as long as there was no blood in his stool and the vomiting wasn't projectile.

I wasn't sure to be honest if it was projectile or not, it was quite forceful but no worse than regular vomiting  I didn't think.

Of course he suffered all the usual childhood ailments but also seemed to get everything else going too and suffered more with it and for longer it seemed, and at an early age.

Like chicken pox at just 4 months old, the GP didn't believe me when I said he had it since he was still soley breast fed and should have all my immunity still, until he saw him with his own eyes and apologised saying I was right.

By one year old he had already had many viruses / colds, asthma attacks which saw me dashing to A&E for nebuliser treatments, and a bad bout of Rota virus with severe vomiting and diorreah and after seeing the GP where he was unresponsive we were sent in an ambulance to hospital where he was put on a drip for a few days.

After that he was very weak and couldn't even hold his own weight for a while.

At 15 months of age he had a bad reaction to an egg mayo sandwich.

Pulling at his tongue and getting agitated followed by projectile vomit all over.

At first I assumed it was a bug or this other thing that caused him to vomit for no reason.

But when it happened again while eating a boiled egg and soldiers a week or so later off to the GP we went.

Eventually we saw an allergy consultant who had skin prick tests done and that showed an allergy to egg whites, so all was clear then.

We didn't get Epi pens then though, I was just told to give him antihistamine and avoid eggs until he was over 2 and try again to re introduce them slowly.

He was 7 when he had the scary reaction to a piece of nougat bar he asked to try that I was eating.

Tingly mouth, throat feeling 'funny', followed by him gasping with a choking cough holding his throat and lips looking blue and slightly puffy I thought, although my husband wasn't sure.

He seemed ok after a few panicky minutes so we assumed something had gone down the wrong way.

Then a couple of weeks later he had a simalr reaction to almonds, we knew then this wasn't  just a  

coincdience.

He was sent for Rast blood testing and told to avoid all nuts and peanuts until we saw an allergy consultant. 

The rast came back positive for antibodies in his blood  for peanuts and almonds.

Some weeks later after discussing with the allergy consultant we got our first prescription for Epi pens since she deemed hs reactions bad enough to be anaphylactic in nature, even though thankfully both times they did self resolve, that's to say his body fought back and won.  

So was to start the new concept of having to remember to carry Epi pens, a bottle of antihistamine and of course asthma mask and spacer / inhalers everywhere we went, care plan for school, taking 'safe snacks ' out with us jic we couldn't  find something we trusted, and asking if food contained nuts or peanuts when eating out.

I was very much on high alert for a while after that and every time he had the slightest bit of a cough while eating my ears pricked up and I was asking him did he feel ok, was there any tingling etc.

Add to that this 'other thing' with the food sticking and vomiting life could be quite stressful at times not knowing which it was.

Of course from about age  3 we had got used to him running off to the loo to vomit while eating, with me hot footing it after him to make sure he was ok.

But this was a new and ever present danger to deal with, the fact that he could eat something and quite possibly die if not treated with his Epi in time.

Of course I continued to mention his 'other thing ' in earnest when at hospital appointments and GP visits and they just thought it was possibly asthma mucous in his stomach, or another igE allergy reaction to cross contamination or an unknown food.

But  allergy tests didn't show anything new up at that early stage other than egg whites, grass and tree pollens, and low to moulds and dogs, and then later of course peanuts and almonds.

Over the years we saw paediatricians, ENT specialists, and even a Gastroenterologist when he was 11 after B described his vomiting episodes like this in his own inimitable way.

'It feels like there is a door in my throat.If the door is open it's ok and food goes down, but if it's closed the food gets stuck and won't go down so I have to vomit to get it out'.

So the GP with a light bulb moment said 'from that description I think I know what it is !'.

Hoorah I thought at last an answer :)

A hiatal hernia he said, possibly even there from birth.

'But wouldn't that have been noticed before now I asked ' ?

Not always was the reply.

So we got referred to a Paediatric Gastroentirologist who also suspected the same and a barium swallow study was booked.
But frustratingly the barium study didn't show anything abnormal, not even reflux even though he had reflux type symptoms like hiccuping, burning acid throw up and chest pain at times for which we had been prescribed Gaviscon plus.

Something my dear son described as tasting like thick snot or mucous and so would not take it unless he was really suffering and then under protest !

So anyway the Gastroentirologist signed us off back to the GP as she didn't think it cloud be anything serious.

So on we went, still having the sporadic food sticking and vomiting and countless other symptoms like headaches, tummy cramps, rashes, lethargy, sensation of a lump in his throat, nausea, early satiety (feeling full quickly ), SPD type behaviour and anxiety and very low mood swings at times and so on.

Blood tests did however on occasion show slight anaemia, and raised  eosinophils in his blood (we will get back to those pesky eosinophils in a bit ! ).
But that can be a sign of being atopic - having lots of allergies / asthma etc, so again Drs weren't too worried.
Because we only saw the paediatrician every 6 months or so it was difficult to get her to see how this was affecting ours and my sons life.
So she thought I'm sure that I was being a neurotic mother as many parents of kids with EGID will be familiar with I'm sure.

B was often fine at appointments, and if asked how are you doing today B would reply 'I'm ok I suppose ' unless you probed deeper and asked him specific questions as he was fed up of appointments and no one knowing why he was like this.

I think this wasn't helped by a GP at our local practice who we saw once when he was 11  (never again ! ) when he was feeling off and had the food sticking and vomiting again over several  days.

At the time he was struggling with starting secondary school on top of all this 'other stuff' and was quite low a lot of the time so we had a referral to CAMHS (Children's and adolescent mental health support ).

So this GP after looking through his medical notes suggested that maybe he had as she put it 'got used to vomiting over the years when eating and that it was related to his anxiety issues' ?

When asked what he thought B said rather angrily 'well actually it's not very nice and I wish I didn't have to do it, so I wouldn't want to put it on'.

I put her straight and said 'he's been doing this since he was little  before he could even talk, so are you saying he had anxiety back then' ?.

I walked out of that appointment fuming and B who was close to tears at this point said 'mum can we stop going to the hospital and Drs now because it's a waste of time.

They don't believe me and think I am just making it up, so what's the point '?

So after that I relentlessly kept food and symptoms diaries in a bid to show his symptoms weren't related to his anxiety.

When he had to go vomit while eating once at his friends house his mum, a friend of mine asked how I coped with it, and how scary it was and how it surely wasn't normal for him to be doing this poor thing.

 No not for other people  but for us it was our kind of normality unfortunately.
We called it his 'other thing' to differentiate from allergic reactions.

I discovered EoE (Eosinophilic oesophagitis ) while researching online around this time.
I wrote down the words 'allergic Eosinophlic oesophagitis ' on the top of a previous hospital letter (which I still have to this day ) and suggested it to the paediatrician saying B's symptoms matched it to a T, only she laughed at the way I pronounced it saying  it was quite rare and then looked at B and said 'I don't know, what is  your mum like eh ' ?  as if I was some munchausen by proxy looney tunes mother.

And then said it was more than likely he had a motility problem (floppy larynx which affects swallowing ) that hadn't shown up on his barium study, so sent him for another one even though I suggested it would probably be normal again.

B hated drinking the chalky liquid, he has some sensory issues so it took some cajoling to get him to take it, and the short snappy attitude of the Dr doing the study didn't help at all and had tears rolling down his cheeks, but he got through it like he does everything else.
And again like previously it was normal, no surprise to me I hasten to add !

By now though the food sticking issues had got really bad and scary.
He was getting impactions where the food was stuck in his oesophagus but wouldn't budge up or down without some great effort on B's part to vomit it up.

It happened while we were out one day.

We got a KFC boneless meal for B.

He was so sitting in the car and jumped out within a minute of the first mouthful, always a bad sign.

Bent over, coughing and choking and complaining he had severe chest pain, and started thumping at his chest to try and dislodge the stuck food.

Hubby who normaly doesn't panic in situations like that shouted me to Epi him thinking it was his allergy reaction.

But I had seen it so many times and I was pretty sure this was the 'other thing'.

B was starting to panic because the stuck chicken wasn't coming out and he was struggling to breathe, partly through panic I think and partly because of the lodged food in his oesophagus.

I reminded  him to breathe through his nose and at this point saliva was pouring out of his mouth as it couldn't fit down his throat.

I was on the verge of phoning 999 or rushing him to the nearest hospital when he started to vomit thank goodness !

The food was out but he was very upset and shaken by the whole incident as you can Imagine.

Despite this he was still very hungry and after wiping away the tears asked could he finish the meal.

This made me feel deeply saddened that even though he had just been through such an ordeal he was still so hungry that he wanted to try again.

I said to wait until we got home at least.

Once home he ate very slowly and carefully and took little mouthfuls and managed to finish the meal.

As well as these episodes of food sticking  he was also  getting almost daily stomach cramping, reflux type symptoms, chest pain, headaches, nausea, joint pains especially lower leg pain at night, allergic shiners (black around eyes), lethargy, and palpitations.
And also it was affecting his mood, he had always been an anxious kid anyway, and this seemed to be making things worse.

He had a lot of time off school due to being unwell.

By now I had convinced the 'laughing' paediatrition to put him on omeprezole since he was still having reflux type symptoms and he hated the Gaviscon.

For a while Iactually  thought that was the answer, but as always the dreaded symptoms returned once more to my sadness.

It took until late 2012 after we finally got a referral to new  paediatric Gastroenterologist who this time actually had another child who had EGID (a Eosinophilic gastro intestinal disorder )  the term for the various Eosinophilic conditions that can affect someone from  the oesophagus down to the small bowel and anus.
He agreed symptoms over the years sounded possible for EoE and 6 weeks later B had a endoscopy and biopsies, where a flexible tube is put down the throat as far as the duodenum.
They took several biopsies from along the GI tract - small microscopic samples to test for the levels of eosinophils (white blood cells ) as well as anything else that might show up.
In the oesophagus there should be zero eosinophils in a healthy individual, perhaps a few if they have severe reflux, but these tend to be mainly in the lower part of the oesophagus where the acid washes back up the throat, not nearer the mouth end.

His scope visually looked bad the Gastroentirologist told me afterwards in the small patents room where I was sitting waiting, with visible furrowing and abscesses as well as obvious inflammation.

I was both stunned and at the same time slightly elated that it was looking more and more like the very thing I had brought up nearly 2 years earlier, EoE.

Then this quickly turned to fear and worry for the future of course.

But we had to wait a few agonising weeks for  the lab report, because he had the scope a week before Christmas this put things back even more than normal and it was 5 weeks before I got the confirmation.

The lab report showed the eosinophil counts were highest further up his oesophagus (60 + eos in upper ) and fairly high too lower down (30 eos ) and he had what they call degranulating eosinophils which meant they were leaking out toxins into his tissue layers, no wonder he was feeling rough so much of the time poor kid !

He also had chronic gastritis (inflammation ) in his Antrum, which is the lower end of the stomach just before the duodenum.

There were some scattered eosinophils found here too, but not enough to diagnose him with Eosinophilic gastro enteritis or EGE for short.

The GI showed us the pictures of his damaged oesophagus.

So, at long last after all this time there it was in black and white print in a report in front of me and there was no doubt about the verdict of 'Allergic Eosinophilic oesophagitis', now let me see, where have I heard that before ?

I have tried to be fairly concise cramming 14 years into a few paragraphs, more to follow :)

And here's some information on EoE and the symptoms.

What Is EGID?

Eosinophilic gastrointestinal disorders (EGID) are chronic digestive system disorders in which eosinophils (white blood cells) are found in higher than normal amounts in areas of the digestive tract.

When they gather in large amounts they cause tissue damage deep down in the area affected.

What exactly are eosinophils (ee-oh-sin-oh-fillz)? They are white blood cells that help the body fight certain infections, parasites like worms. Eosinophils are most commonly associated with allergic diseases.

The oesophagus is the one are where there should be zero Eosinophils found.

Eosinophilic Esophagitis (EoE): The most common and difficult type of EGID to manage, EoE is characterized by inflammation of the esophagus due to abnormally high levels of eosinophils in that area of the GI tract. 

Eosinophilic Gastroenteritis: Associated with eosinophils and inflammation in the stomach and small intestine

Eosinophilic Colitis: Associated with eosinophils and inflammation in the large intestine 

  

What are the Symptoms of EGID & EoE?

The symptoms of eosinophilic oesophagitis vary from one individual to the next and can include:

• Feeding difficulty (such as needing to puree foods, being slow to chew foods, avoidance of certain foods)
• Poor appetite
• Dysphagia (difficulty in swallowing foods and/or requiring a drink after eating)
• Nausea, persistent vomiting and retching
• Reflux  that does not respond to anti-acid medication 
• Abdominal or chest pain
• Failure to thrive (failure to put on or loss of weight)
• Food impaction
• Difficulty sleeping

In other types of eosinophilic gastrointestinal disorders, symptoms depend on which part of the gut is affected (e.g. diarrhoea and bloody stools if the small or large intestine is involved).

In addition to (not in lieu of) the above, some people also experience pain in their lower limbs (legs, ankles & feet), ear infections, asthma, croup, migraines, mysterious fevers, and more frequent “colds” when they are reacting to a food. Behavioural changes have also been reported in some children. 

B on a particularly cold day in Jan while in Paris aged almost 8 years old