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Allergies and intolerances

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Original poster

DS shaking and vomiting -- apparently not allergy related

42 replies

ilovemydogandMrObama · 02/05/2009 16:53

DS has a severe milk protein intolerance. He's on Neocate, and under a consultant.

Decided to venture out for the day rather than be ruled by his diet Went to Pizza Express. He had pasta and tomato sauce and checked with waitress there wasn't cheese, butter or milk.

Anyway, he managed to grab a piece of his sisters piece of pizza and was violently ill a few minutes afterwards, and started convulsing.

Ran to a walk in center and he was checked out. The nurse called the hospital and spoke to a Paediatrician who said that it couldn't be an allergy as fitting doesn't happen with an allergy.

Seemed to settle with Piriton

Anyone?

OP posts:
BlueBumedFly · 02/05/2009 17:03

I don't know Ilovemydog but why would it not be related? We are talking massive coincidences here if he happened to be sick and convulse moments after he ingested something he is known to be allergic to.

There are loads and loads of great people on here who know all about diary allergy, I only do nuts but wanted to bump this one up for you.

Will have a google and see what I can find...

Original poster
ilovemydogandMrObama · 02/05/2009 17:14

Thanks - I absolutely agree it's related, so was a bit when the nurse said that the Paed insisted it wasn't related.

there seems to be a huge reluctance to use the word allergy -- I don't know why.

OP posts:
BlueBumedFly · 02/05/2009 17:17

Ooooo, now you are onto a whole different can of worms, we had this discussion the other day about intolerance versus allergy. Do you carry an epipen for him?

BlueBumedFly · 02/05/2009 17:19

Well, is New Zealand they class convulsions as part of anaphylaxis/allergy:
www.allergyclinic.co.nz/guides/44.html

tatt · 03/05/2009 09:32

allergy and intolerance are actually different mechanisms. If you have an allergy you produce massive amounts of IgE and that can cause changes in blood pressure and difficulting in breathing as well as vomiting and rashes. Intolerances are more likely to affect the gastro-intestinal system and are less likely to be fatal. "Allergy" should be used only when tests have shown IgE levels.

In anaphylactic shock there are changes in body temperature, which can result in the child looking flushed or clammy. High body temperatures can lead to fits in children. Have to say I though shock was normally a fall in temperature but that may not be accurate.

What tests did they do/ what were symptoms before starting Neocate? If there haven't been skin prick tests or blood tests I'd be inclined to ask for them.

Original poster
ilovemydogandMrObama · 03/05/2009 14:27

DS was at Children's Hospital for a week last month while they tried to diagnosis the underlying cause of his severe anaemia.

He was negative when they tested via stool sample, however I did point out to the consultant that this was after he was nil by mouth for 48 hours and hadn't had any milk for around 72 hours? The consultant was happy enough to label him cow milk protein intolerant anyway as removing it from his diet resolved the constant vomiting, although still has elevated lactate levels.

OP posts:
treedelivery · 03/05/2009 16:21

How is ds today?

Was looking through old thread today and saw you there loads. Hope you're keeping ok?

Original poster
ilovemydogandMrObama · 03/05/2009 22:14

Hi Tree

DS is fine today, although sleeping lots, thanks for asking.

He had a dose of Piriton yesterday, and the hospital suggested he use it when he has an allergy related episode, although the word allergy not used as it's only an intolerance as his mouth doesn't swell up. Semantics, it would seem, are important.

How's your DD2?

OP posts:
treedelivery · 03/05/2009 22:52

It's all so vauge and frustrating isn't it?

Oh God I am so dreading dd2's hospital appt. If they try to fob me off I'll go mad. I know I will. At best I'll have to pull rank and get heavy weight and demand second opinions on everything, including the time. At worst security will be called. I'm nervous and scared and very on edge. Poor unsuspecting Dr!! Found a consultant who is paeds with allegy as a specialism [I would like to mind melt with him] that I will insist on being referred to if I have no joy at the hospital we are going to. Its an hour and half away, but the wait was 2 weeks. It was 2 months at the local so no contest.

Dd2 is semi ok. Have had tough 5 days. Today she has really emptied her bowels, lots of green stringy stuff. Not good - looks like intolerant poo. It looks lik eit shouldn't be like that.

Am rambling and ranting. Poor Hatts - she has a rough ride and is only young. Your ds too. I'm a softy, I find it very distressing. But am uber tired and have held her all day, so will feel better tomorrow

thumbwitch · 03/05/2009 23:09

ilovemydog, have a look at this webpage on allergies - if you scroll down, it does mention that convulsions are possible in the bit on Central Nervous system reactions, under Affected Body Parts.
Perhaps you could print it out and give it to the paed in question!

treedelivery · 03/05/2009 23:17

thumbwitch you always seem to pop up with what is needed.

Went to the thread you pointed out btw.

simpson · 03/05/2009 23:17

Ilove - how long had your DS been dairy free?

Would the length of time being dairy free make the reaction worse?

DD (15mths) also severely intolerant to dairy/soya ate some chocolate last week having been dairy/soya free since 10mths old and I think the reaction was worse having been off it iyswim.

She is also on neocate BTW.

tree - hope your appt goes well. Sorry you have had a rough few days

misdee · 03/05/2009 23:19

treedelivery, not sure if you saw my thread

hope your dd is feeling better soon and your appoinment goes well.

Original poster
ilovemydogandMrObama · 03/05/2009 23:21

DS' consultant sent me a copy of his latest blood test results, and I asked my cousin, a Paediatrician for help in translating it all, specifically as far as asking the right questions. Expecting to ask DS Paediatrician all sorts of complicated questions, he suggested I ask the following:

  1. Why does DS have severe anaemia with Ferritin level of *?
  1. Why does DS have elevated lactase levels?
  1. What needs to be done from a clinical stance for a diagnosis?
  1. As his kidney scan shows **, when will he be referred to a Nephrologist?

Am wondering whether the cut-to-the-chase works? I like keeping things simple.

Had to laugh though yesterday when we we saw the doctor on an emergency basis. The doctor heard me speaking with DD, and she said, 'your name is xx?' And DD said, 'no, I am a horse. You must speak to me in horse!' (DS) Is a Tiger!

OP posts:
thumbwitch · 03/05/2009 23:23

thanks tree!

in answer to simpson, yes, if you stay off the food in question for a while, your bod can have a massive "NOOOOOOOooooooo! not again!!" reaction (i.e. more severe than before) - I have a friend who had lowgrade stomach grumbles, lethargy, headaches, fatigue etc. and she was diagnosed with wheat intolerance. She gave it up but was a big fan of bread and one day after a few weeks without it, she had a splurge and ate half a baguette. She had a near-anaphylactic response to it - face, eyelids and throat swelled up, almost to closure (very dangerous in throat of course), hives all over her neck and chest and dreadful GI tract pains.

If you leave it for long enough (and the only way to know when long enough is, is to test it ) then the intolerance/allergy can "wear off"; but it's a risky thing to do.

thumbwitch · 03/05/2009 23:27

I wonder whether or not your DS has been tested for coeliacs disease, ilovemydog - a common effect of coeliacs is anaemia. I don't know enough about the rest to say whether or not they are relevant to that, but you might consider throwing that into the mix as well. Coeliacs can quite often be dairy intolerant as well.

treedelivery · 03/05/2009 23:29

How did I miss that. Thanks for the link Misdee

Just read it Misdee, will read it again tomorrow when brain less fried.

I feel really sad for you and all this worry you have had. You must be knackered. The picture of the hives skin thing is compelling to put it mildly.

simpson · 03/05/2009 23:32

How reliable is the test for coeliacs?? (for small kids I mean - have heard it might not be)
She had blood test..

My DD was tested and am awaiting results...

treedelivery · 03/05/2009 23:35

Misdee - And for your dd of course! It the poor mites that are living through it. I feel strongly that we are their voice, we are all they have to try get help. I promised dd I would try to help her when she was 3 weeks old. Still trying....freaking GP explaining that 'babies cry and need to be held' did hinder it all slightly but hey ho. Press on.

Apologies for thread hijack Dog!

I think ds was tested for Coeliacs or did I imagine that?

misdee · 03/05/2009 23:37

treedelivery, have you tried wrapping your dd in a sling? dd4 is much more contented since i started carrying her, and she is upright more. and burps easier.

well, i hve a week of worrying b4 we can see gp, so i best get off to bed.

simpson · 03/05/2009 23:38

Tree - I know what you mean about being their (our LOs) voice...

Makes me more when peads don't listen...Grr..

treedelivery · 03/05/2009 23:39

Night Misdee, bed for me too. Good luck for the week.

Baby wearing here. Kills my back but am big weakling.

treedelivery · 03/05/2009 23:41

I feel like growling too Simpson, or howling.

Will have to really take deep breaths and keep calm at consultation - and not go charged and waiting for them to make an error or say wrong thing. After all, this is my problem [my angst].

....and breathe.......zzzzzz

simpson · 03/05/2009 23:44

Yes I know how you feel..have been waiting for results for DD for 3 wks

Only got neocate due to MN. Grr..

But hopefully you will be ok. The last pead (not normal one) was fab

thumbwitch · 04/05/2009 00:24

ilovemydog, when you get back to this thread, have a look at this link - also on convulsions linked to food allergy