Blog; Post allergist appointment fallout – SPT, Home challenges->hospital challenges and consideration re IGE or non IGE food allergy
Far out, complete 180 on what happened yesterday with our appointment.
So after attending the appointment yesterday I began to wonder, what happens if he reacts when we trial at home, there is a possible risk of anaphylaxis, also what is the point of making him suffer if he has still reacted recently to dairy/egg/soy in the last three months.
So I wrote on a fabulous group that I am part of with other Mummy’s whose children have the same thing and a lot of people were surprised at the allergist’s flippant advice and said they wouldn’t do challenges at home without an updated skin prick test and I could totally see where they were coming from and began to think more about it.
I am sure I would have got to this point myself and really doubted the safety in doing the tests at home, apart from trialling the ‘may contain traces of’ but to be honest, I have had so much on my mind lately that I just didn’t completely think it through yesterday and Brooklyn was there with me at the appointment, rummaging through my stuff, it all just added to my brain fog, I only got clarity to think it all through last night.
So anyway, this morning I called the allergist. I didn’t sleep well last night because I was thinking about it a lot and for other reasons (I’ll get into later).
I went back through our hospital paperwork as well to see what the paediatrician had initially diagnosed as and what the emergency specialist registrar diagnosed as because I have started to wonder;
Yes it definitely is an allergy and not an intolerance; he has no threshold to the allergens, microscopic amounts and cross contamination set him off.
He gets itchy marks on his face from the allergens.
He passes mucous and blood when he has the allergens; which the paed called allergic colitis.
But also, his symptoms are very similar to food protein induced enterocolitis syndrome and I vaguely remember the hospital mentioning this when we first took him in and that is exactly what they have put on his discharge letter.
So the difference between a regular food allergies and food protein induced enterocolitis (FPIES) is that FPIES is a non ige food allergy, therefore skin prick testing (SPT) will not pick it up, and this could be why Brooklyn’s SPT at six months didn’t show anything… but it could also be that he has an ige allergy but his infancy prevented it from accurately showing.
Something else has also been happening which has been playing on my mind and worrying me, which I will also get to later but it points to FPIES….
Anyway, at 12noon today the allergist hadn’t called me, so I called again. I really wanted to ensure I spoke to her today and not have to wait until Monday as this has been on my mind making me slightly anxious. The receptionist did the usual ‘they’ll ring you when they are free’ [just get off the phone already] bullshit – lady I know this game, I have been a paralegal for some large players and shielded many a calls before so I know your game… anyway, come 4.30pm I’m like nope this is bullshit we are getting way too close to 5pm so I’m ringing again, same lady again *roll eyes*.
I said to her that it is extremely important, [you aren’t going to just fob me off and not give a crap] and that I need a call today or I will be seeking immediate alternate advice.
5 minutes later I received a call from the allergist.
Complete 180 on what she said yesterday. In her defence, there were a couple of things I forgot to mention yesterday:
I did tell her that he reacted to dairy in the states and egg from a grill in July however I forgot to tell her about the undisclosed soy that he also reacted to in August(?!) so he has reacted to 3 allergens still recently.
I did tell her that he has had stomach problems ever since his 12 month vaccinations (which were almost 3 weeks ago) however she just fobbed this off and reiterated the importance of vaccinations.
I reiterated the itchy red marks that he gets on his face which indicate a moderate risk of anaphylaxis – I did tell her about these yesterday but again she didn’t actually give them much thought. It is like she had a preconceived idea and plan in her head and she just didn’t properly listen to what we said.
So she then said yes do not do any challenges at home. We will do the challenges and tests in hospital in February (give it a bit more time in the hope he might grow out of it a bit more by then but also practicality wise too).
I mentioned how the ER registrar mentioned FPIES as a diagnosis and she seemed like oh yeah why didn’t I think of this and she noted how some of the symptoms do coincide with his. She said we can orally test for this in the hospital.(?)
She also agreed that what is happening post his 12 month immunisations does sound a bit like an FPIES reaction – he has had an upset stomach ever since the vaccinations, he has had less ‘normal’ nappies than irregular nappies AND he is dehydrated, well maybe not dehydrated but EXTREMELY thirsty – still.
As I have mentioned in the past, he has slept all night for 12 hours for the last 7 months, however since the vaccinations he is waking some nights [last night for eg], not all, but a fair few and is extremely thirsty; guzzling his water down and drinking a lot. This is a typical reaction from what I have read and the vaccination had microscopic amounts of egg in it so it totally makes sense.
She has suggested we give Zyrtec for the next 3 days in the hope this assists reduce inflammation / histamines and the thirstiness/dehydration, although a side effect to anti histamines is thirstiness.. hmm…
Anyway this is where we are at.. sorry for the long post, I am not a woman of few words. I will do a separate post about the emotional aspect of the last 24 hours…