EGID awareness

May is the month in which those of us who's kids suffer from Eosinophilic disorders try to raise some awareness of the condition, but since I didn't start this blog until recently I thought I would share the video my friend Liz created, her youngest  daughter also has EGID.

Singing the soundtrack is the brilliant Aimee - Lea who also has EoE like my son.

http://youtu.be/avLT99NWX64

From bad to worse

Well as the title suggests things have gotten pretty bad here just lately.

B has been suffering with food sticking and vomiting more than usual over the past couple of months and it has got to the stage where just about everything he tried to eat caused food sticking which led inevitably to him vomiting up what he'd just eaten.

He has also been extremely lethargic, sleeping for up to 12/14 hours at a stretch.

He had been getting increasing bouts of chest pain and spasms for a long time before we got to this too, and saying he was starving to then only eat a mouthful if that.

Tummy cramps and headaches also featured too as usual.

Along with the usual throat clearing and emotional aspect it brings with it.

He told me the other day he hadn't eaten anything all day at school because he feared it would lead to vomiting which is of course very embarrassing if it happens while out and about or in school in front of friends.

Thankfully we had an appointment booked with the local consultant on Friday.

When she asked B how he had been he merely said 'really bad' which I think summed it up well.

The plan is to add back in Omeprezole which we had weaned him off since we weren't sure if it was necessary given B had never actually been diagnosed with reflux even after having 2 bariums studies  over the years.

Then if that doesn't settle things down we are to remove all dairy from his diet for a few weeks until we see the gastro Dr again in Dec to see if that helps.

We did try dairy free last week even before we saw the consultant as I had a feeling that might be the suggestion, and we managed 4 full days and then B didn't think and put butter on his toast !

Amazingly though rather than losing weight B has gained 6 pounds over the last 6 months and grown an inch.

But he always was resilient in that way, even if he's struggling to get food den he will often be quite persistent and just cut his food a lot smaller, take more time to chew and hopefully get some food down.

But somehow he must make it up along the way which as the consultant says is a good thing as it means he doesn't get to FTT (failure to thrive ) which could mean in extreme cases an NG feeding tube, something I really couldn't see B ever agreeing to.

He does like the Rice Dream chcolate milk (dairy free ) cartons and can go through 6 a day some days so that probably helps.

He has missed quite a lot of school too but they have been supportive so far.

We are having a meeting with the school and the school nurse shortly to updat them on what's going on.

So that where we're at presently.

Back to school after summer

So B was back to school just 3 days the first week and then after the weekend he wasn't good again it seems.

On Monday he woke up with really severe hayfever type symptoms.

Explosive sneezing, itching in hs ears and face, streaming nose and eyes really red and sore.

After antihistamine it eased off gradually.

But he had fallen asleep on the sofa and i didn't have the heart to wake him up so kept him off school.

He didn't eat too well all day either.

Tuesday off he went to school seemingly ok.

Then I got 'that call' at 1.05 PM from school.

Why do I know it was exactly that time ?

Ask any mum of a food allergic child and they will tell you I'm sure they always know exactly what the time is when they get a call from school because from that moment on your mind starts reeling and the what ifs creep in.

The voice on the end of the phone,  a familiar one to me as I know the school receptionist, said 'I don't want to worry you but think you need to come and get B as he's just walking towards me and has just vomited into his hands as I speak'.

Whitout thinking clearly I said ok thanks and ended the call and hurriedly tried to find my car keys and head out the door for the 8 minute or so drive to school.

Then it occured to me I hadn't even asked if it was allergy related !

So I phoned  back and asked the question what had he eaten ?

 was it an allergy reaction did she think ?

She said 'let me put B on the phone so you can ask him' that was a relief as he obviously wasn't bad enough that he was unable to talk.

My sons never found it easy always to explain or work out how he feels with reactions or whether it's allergy /bug/ EoE which makes life a little tricky and I've found you have to be a super sleuth as well as a mum at times !

So I  asked did he think it was an allergic reaction or something else ?

He said 'I'm not sure, remind me what are my allergy symptoms again' ?

So I said 'do you have any tingling sensation in your mouth of throat, are you itchy anywhere, are your lips 'puffy' ?

No he said so I suspected it wasn't an igE reaction, but was still worried none the less.

I told him to let someone know if he did think it was allergy and set off to school feeling anxious.

And so the drive to school wasn't the most pleasurable one, and everyone seemed to be getting in my way and driving really slowly !

When I eventually got to him he said he had been feeling a bit 'off' all morning but thought eating something might help.

He only took one bite of a sausage roll and proceeded to vomit a couple of times before getting back into school (he's in year 10 now at secondary school so allowed out at lunch break ).

So we thought it may well be one of the sickness bugs doing the rounds possibly, as he definitely didn't seem to have any of his usual igE allergy symptoms.

Once at home after a sleep he said he was starving so I made him some plain spaghetti.

He managed to keep that down ok.

He didn't vomit again for the rest of that day but given school protocol for sickness bugs was to keep them off 48 hours I decided it might be best to keep him off the next day too.

Wednesday he ate without vomiting again all day, although he had really bad stomach cramping and bloating and  was close to tears at one point but was saying he was hungry, so food was offered but again he hardly touched it.

He often gets like this though with an EoE flare, it's called early satiety.

 Later on at tea time he had to rush and vomit after the first mouthful again.

So again I was unclear, bug V EoE flare.

 Aaargh ! so frustrating.

Come Thursday morning I did try and rouse him because he has quite a lot of time off school due to ill health, but there was no getting him up, he was dead to the world it seemed.

So I decided best to leave him be.

I offered food and drink during the day but he didn't eat anything and didn't get out of bed until 3 PM.

He said he had stomach pain again and he usually triies to sleep it off when he's like that.

But he seemed to perk up a bit later on.

Until tea time,  when he vomited again with the first mouthful of food.

But he said this time he felt like it was sticking going down maybe ?

Despite that and the fact he still wasn't eating a lot he was feeling better though.

So Friday he went into school.

Gradually over the next couple of days his eating increased and I was glad we were over the worst, until the next time I had to play Sherlock Holmes !

So my verdict ?

EoE flare I think given the sporadic vomiting, stomach pain, lethargy and the fact it went on for several days.

But in reality we may never know for sure.

So then yesterday evening on our way back from a day out at the coast to see an air show

he started explosive sneezing, sore swollen eyes, nose bleed, mucous.

 To what you may ask ?

Possibly SILs dogs that he was petting although we have 2 dogs and he's ok with them and his SPT is only 2mm now to dogs.

With it being evening it could also have been pollen related and it was a beautiful sunny day.

Who knows !

Sherlock, where are you when I need you !

But I'm just hoping that this doesn't start off another EoE flare up as moulds, pollen as well as food triggers can affect kids with Eosinophlic disorders.

Hopefully he will come home saying he's been fine, fingers crossed !

 

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