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.