I'm Baaaack!!! With Results, Well Most of Them!

[Spectra]

Hey Wendy, I got your pm, but when I try to get into my pm's my computer always crashes!  I just got back today, we stayed overnight, too long of a trip.

We were there for 4 hours!!  They had 4 people work on him lol.  So we did a lot of history questions, a skin prick test, and blood test.  I won't know the results of the blood test for a couple of weeks.  The skin prick test we tested for milk, soy, oats, barley, beef, egg, wheat.  The result for that showed he is allergic to egg.  However we are waiting for the blood test as the prick test isn't always accurate, as sometimes it is a delayed reaction.  We have been prescribed an Epi pen for the egg allergy and they showed us how to use it.  That's number one, we aren't done yet!

I asked about peanuts, Dr didn't even want to talk about it yet, said to just avoid it for now.

Dr did diagnose Hudson with having FPIES, or Food Protein Induced Enterocolitis Syndrome, in regards to his reactions with Oats and Barley.  Of course being diagnosed with this means other foods could be a problem and the severity can differ.  In a case of this he has to go straight to the hospital if he starts vomiting as he needs hydration.

In regards to Hudson having mucus in diarrhea for foods he has had before::  He said that because he's been on Neocate for a couple of months his tummy has become lazy, and that he hasn't had much for solids either.  So when all of a sudden Hudson had 1 cup of Pear his body reacted in a negative way.  Because of all this, and the FPIES, we have to introduce all foods VERY slowly.  Even if it means 1 tbsp a day for a week of a certain food until his tummy can handle it.  AS WELL, fruit and some veggies can cause slight eczema due to the acid in the particular food.  This is probably why he got some red bumps starting on his face the next day after the pear.

I spoke to a Nutritionist there as well about all this because he gags a  lot on anything with texture.  We were told to just try lots of rice stuff, safe stuff, many times a day.  Since he is growing well and is on Neocate we really don't worry about nutrition, but more about him eating these foods because he needs to get use to eating solids, or else we'll have bigger problems later.

They will be in contact with us a lot, which is great.  I can't wait to hear more about the blood tests though.

[Spectra]

Oh, and for anyone who is curious about FPIES here is a link on it:: http://www.kidswithfoodallergies.org/resourcespre.php?id=99&title=FPIES:_Food_Protein_Induced_Enterocolitis_Syndrome

[Mydreamcametrue]

YES YES Finally some answers.

If you remember when you were first dealing with this, I sent you that website Parent-2-Parent.com  and told you about FPIES.  There are SO many mothers on there that deal with that. 
I know one of them that I met on that website and her son and mine were dealing with the same issues.  Her son was diagnosed with that.

That makes perfect since about the foods and the neocate. 

Yikes, an epi pen, I am sure was scary.  So I assume he tested really high on the allergy scale for that.

I am sure you are just releaved to have some answers and cannot wait for the blood test to come back.

What all did they test with his blood?

Did they talk any about a possible endoscopy with a GI doctor in the future?

Glad  you are home and it went fine.  Hang in there!!

Huge hugs, Wendy

[Zoey]

Oh Mel that's so great that you've got some answers! 

Keep us posted!!

[scarlettsmom]

Melanie!  SO glad you've gotten some answers!  Must be such a relief.  Intersting about the Neocate, I'll have to keep that in mind w/dd2.

Looking forward to hearing what the blood test comes back with.

(((Hugs)))) - a long journey, but some definite information finally coming to you.

xo

[deb]

Oh, yay. It's so much nicer when you know what you're dealing with instead of wondering if it's this or that or something else entirely.

Thanks for the update!

[Spectra]

Wendy - Yeah the bump, result, from the egg prick was about 1cm in diameter.  Which is a big bump, over 5mm is considered high.  I only got the one prescription for the epi-pen for now, until the blood tests come back.  They tested him for the same things in the blood test, nothing new.  Didn't mention anything about an endoscopy either.  Hopefully that won't have to happen!  I do remember you talking about FPIES too, and I thought "No Way" lol, I don't know why I thought that, probably because they have rice on the list of possible foods to avoid and he took right to rice.  But the Dr explained he doesn't have to have a reaction to all of the foods on that list.  Any food is a possible problem, depending on the make-up of the protein.

Yes, it is nice indeed to finally get some answers!

[JennŠ]

Sending hugs!!  Gotta read that links soon!!

[Spectra]

Basically FPIES is like an allergy.  The reaction is almost identical, except there is no swelling of the lips, or hives around the mouth and the reaction is delayed, by about 2 hours, whereas most allergies are instant.  Also it doesn't affect the immune system, like an allergy does, and therefore an epi-pen will not work.  This is also why allergy tests show negative for oats and barley.  Most will not go into anaphylaxis shock, but can go into shock for dehydration, and is why it is important to take them to the hospital right away to get fluids and to monitor their heart rates and blood pressure, as they do drop. 

They do suspect he will grow out of it, maybe around age 4, but we don't really know for sure.

Dr did say the MMR shot is fine, but we have to stay at the dr's office for 30min to make sure no reaction.  However, he cannot have the flu shot as there is a lot of egg product in that.

So I'm avoiding egg, oats, and barley like the plague.  Dairy and soy I am avoiding so he doesn't get that bad eczema and congestion, but he doesn't react severely to it.  I will probably try dairy and soy when he is about 2 to see if he has grown out of that yet.

Thanks for the hugs! 

[Spectra]

Basically the reaction in FPIES goes like this::

2 hours after consumption, even one drop, vomitting will start and last for about an hour.  Vomits about 10 or so times until he is vomiting bile. 
He is cool to the touch, clammy, pale, and extremely lethargic for about 4 hours.
Then the diarrhea kicks in with mucus and will last about 24 hours.

[JennŠ]

Mel, what about Flumist?  On the other hand, it's a weak live virus, so maybe not?  I can't do it 'cause of asthma.  
Just read the reaction stuff.  Holy moley girl!!  Talk about scary!!

[Spectra]

Yeah, I'm not to worried about the flu shots because here they aren't given unless the parent asks for them.

Yeah the reaction was scary, that's why I thought he had an allergy to it.  I'm glad it does have a name and just isn't disregarded because it has a negative result in an allergy test.

[Mydreamcametrue]

Hugs Mel. I am glad you are getting some answers and like you said, just not being disregarded because an allergy test was negative.  Sounds like you have a good/knowlegable doctor.

[Spectra]

Yeah, I got the head of the department at the IWK, one of the best children's hospital in all of Canada.  I was worried though that they were going to disregard me, like the other 2 doctors I had dealt with when he was 6 months.  I'm so glad they weren't!