Is this a common reaction?

[LivinOnAPrayer]

Hi guys. For those of you who dont know us, my DD Alex is 22 months and a real oddball lol. shes got some allergies including dairy, peas, rice milk and foam tape (go figure!), amongst some other nasty medical issues.

Anyways, today i had just finished feeding alex, a little forcefully at the end (just getting over oral aversion) and just after she'd finished, she went all pale and clamy. Her lips went really dusty colour and she was not right at all. She fell forward and bit her lip and had 1 instant case of dihorria. Does this sound like an allergic reaction of sorts, or something more sinister?? I did take her to ED but she'd got her colour back and was just tired then.

Any ideas? Oh the food was beans if that helps.

[berniebabe]

Wow, glad to hear she's OK, that would have freaked me out. Hope you find out what it was.

[amber7]

Hi Lexi11,
Big hugs it is very scary.My DD(12 months) so far has had two reactions similar to what you are describing.
The first was to egg,ate it ok and half an hour later she couldn't keep her eye's open she was so tired,she went all floppy and pale.Was just about to rush her to hospital,then came mountians of poo! She went 3 times then was smiling and happy.
The next was worst she had a apricot fruit finger(I don't know why on earth I gave it too her,as she has a MPI) Same half hour later went all floppy,couldn't keep her eye's open,one eye went all red.We were out at the time so we rushed to get to the get home,then she started vomitting and vomitting,it was so scary as we couldn't stop the car.Once again she then came good but the vomit that touched her skin gave her welts.
I took her to the doctors both times and are now waiting on her appointment with the allergiest.
Don't know if that helps,but I hope your LO is feeling better soon.
:)

[reAllytee]

Yep ive heard of this !

A mum on here who im good friends with Tisme is her user name but anyways lol her son has done this in the past !

Infact she had to call an ambulance one morning when he was a toddler because he had this type of reaction when eating his cereal. He went white, limp & went face first into the bowl !!!!

It worked out the he had an allergy to milk that no-one had picked up all that time !

[bossoflatch]

not saying it is but could be FPIES .. my dd was dx with this (amongst other things ) when she was a about 8 months old.


its food protein induced enteropathies sydrome .. very very dangerous.. . she reacted to rye bread.. so cant try her again for some time and has to be in hospital

basicaly they react to the food.. go lethargic. start vomiting within a few hours and then diarhoreea to put anyone to shame..

worth looking into as you dont try the foods again it nastier each time you try the same food.

[Nowhere]

:iagree:

another thought is dumping is the food moving through to the bowel two fast this can cause what you discribe

[LivinOnAPrayer]

thanks ladies, im sorta glad it is a food reaction, at least we know not to try her on beans again! Makes sense, seeing though shes allergic to peas also. silly me.

I'll speak to her pead bout it on thursday anyways. Thanks!!

[LivinOnAPrayer]

Hi guys. Thought id give you an update on Alex. Today she had another 'episode' although not as bad as yesterday. Our gp siad its caused by her stomach/bowel or something crushing the nerve that runs from right in amongst your guts, to your brain. When the nerve is pressed it demands more blood from brain, which causes her to faint. The cause is sortof unknown, could be as simple as an intolorence/allergy causing the gut to react that way, or could be a more serious GI issue. Will speak to pead on thursday about testing, until then need to keep a close eye on her, but she should be ok. *sigh*.

[2sweetgirls]

:hugs:how terrifying.

I hope they figure you little darling out.

[Harlequin]

Hi guys. Thought id give you an update on Alex. Today she had another 'episode' although not as bad as yesterday. Our gp siad its caused by her stomach/bowel or something crushing the nerve that runs from right in amongst your guts, to your brain. When the nerve is pressed it demands more blood from brain, which causes her to faint. The cause is sortof unknown, could be as simple as an intolorence/allergy causing the gut to react that way, or could be a more serious GI issue. Will speak to pead on thursday about testing, until then need to keep a close eye on her, but she should be ok. *sigh*.

Do you mean Vasovagal Syncope? (the vagus nerve)

This could be what Ava has, but we aren't entirely sure because it's one of those things that you can't really test for. You have to eliminate everything else first.

Ava's had about 4 episodes since August last year, though she doesn't really get explosive diarrhea straight after, she gets runny poos the next day sometimes but will always vomit JUST before recovering from the episodes.
Some of her episodes have lasted over 30 minutes and in the most recent one (last friday) she actually had 3 in one day :(

It's scary. I sorta hope its VV Syncope or Reflex Anoxic Syncope, but it would be nice to know what's triggering it.

I hope you get more info regarding your bub. :hugs:

[LivinOnAPrayer]

Thank you :hugs: It is scary isnt it! Im glad we can tell the warning signs now, the cold sweats, paleness ect. I hope the dr has it right and its not a seizure. Alex already has absence seizures so we're looking at that, but given her 'episodes' have only been right after feeds, im guessing the drs right. Anyway, we see her pead on thursday, so will hopefully get some answers.

Do you know what treatments are avaliable?

[Harlequin]

Have you been for an ECG and EEG?

ECG to rule out heart problems and EEG to rule out epilepsy.

Ava's had both of those and they came back fine.
We also recently did a glucose fasting blood test and iron test, but they were both fine.
I have no idea what her trigger is if it is VV Syncope. It must be exhaustion (bad sleeper) or an allergy.

[smelly]

Hi
I don't know much about vasovagal syncope but think psychological stress can induce them. 16mth old DD (who has allergies) suffers from this on occasion. It is usually in the context of being unwell (e.g., having a virus etc). First time it happened she was 3 months old, vomitting terribly and then she went pale, floppy and her eyes rolled back in her head. We freaked out and called an ambulance! It has happened several times since, usually after she has vomitted or fallen and hurt herself. DDs dr said it is a physiological response to the psychological trauma... her blood pressure drops rapidly and she faints. This would also explain why the soles of her feet and palms of her hands go as white as a sheet of paper. When this happens we know she is about to pass out.
Having said that, your dd's symptoms sound a little different so I'd be wanting to make sure that she gets checked out thoroughly for seizures and heart problems.
Best of luck.
simple.

[Harlequin]

It's once you've had the eeg and ecg come back fine that you kinda sit there thinking, "ok now what??".
You second guess it, like what if it's not a syncope? What if it's something really bad??
It sucks. :(

Smelly, do you think psychological trauma could cause an episode a few days later?
Ava had to have that blood test on Tuesday, it was HORRIBLE for her. Then her naps were really dodgy on wed and thurs, then she was clammy and had three episodes on the friday evening.

Edit: Smelly, what you described sounds more like Reflex Anoxic Syncope.

[LivinOnAPrayer]

hi ladies.

Alex has a previous heart problem that required surgery, but is now doing really well heart wise. She's had a million ecg's, some mri's and im sure she had an eeg at birth but not since.

Alex seems off her food lately so im sure she knows somethings not right. Im hoping her gp can offer some advice today, but like i said, tomorow is pead (couldnt have come at a better time!!) and im sure he'll send us for tests ect. I sort of hope its either not too serious or something that can be managed with meds. I'd hate for Alex to have to deal with more...

[Harlequin]

Poor bubba :(

I don't think there is anything you can do for VV Syncope, if that's what it actually is. But vv itself isn't dangerous, I think the only danger is if they fall and hurt themselves.

I sorta want ava to get an mri to rule out anything horrible in her head. Hopefully the paed I'm calling today will have some ideas.

Keep us posted, lexi11 :)

[LivinOnAPrayer]

Hi guys. Pead was a waste of time today, i prefer alex's gp!! All he said was that he's happy with her, but to get her bsl checked next time she faints. nice.

We found out Alex is highly allergic to soy today too. That was fun NOT. I gave her a biscuit with soy base and she choked on it, had dihorria, rash, runny eyes ect within seconds. Wont be trying that one again!!

[Harlequin]

That sucks Lexi. Poor bubbi. :(

Sucks that the paed was lame too. I hate when you go to a specialist and they just seem complacent or like they don't care.

I think a lot of drs don't really know what to do when it comes to syncopes.
I'm calling Ava's tomorrow to tell him about her latest episodes and see if he still thinks its VV Syncope or if he has any other ideas.

[reAllytee]

Peta - That sucks :hugs:

[LivinOnAPrayer]

Thanks reallytee. It does suck atm. I'm so over it.

I really think it is that nerve thing, as alex ate HEAPS today for the 1st time since the 1st few episodes on the weekend, and she went all pale again. so i rekon its when her tummy's really full. I know im not a dr but i have a gut feeling thats what it is. Im not worried that its seizures, as she has absence seizures and this fits so well with the nerve thing. I dont know if maybe i should make her feeds smaller and more frequent, cause she already eats 2hrly so she gets enough calories to put weight on. What do you think?? I've got to see the gp and get his opinion i think. And get a proper dx in med terms lol

[Harlequin]

Lexi, when the paed first diagnosed VV Syncope as what Ava had (back in November) I started watching out for when Ava had had a bad sleep the night before and when she wasn't eating enough. The only link I could think of was food and sleep.
She wasn't having spells after a fall, pain or fright like you'd expect with Reflex Anoxic Syncope so it wasn't really making sense. The paed did say that ANYTHING could cause the VV spell, anything that makes her feel icky could bring one on.

So since then I have always made sure Ava has something in her hands to eat. I'm not as fussy with what she eats and have resorted to giving her cocopops and potato gems if I'm worried she isn't eating enough.
She tends to graze throughout the day rather than having big meals.
Also I'm just REALLY vigilant when she's had a bad sleep or interrupted naps during the day because I Have a sneaking suspicion that sleep has more to do with her attacks.

She hadn't had an episode for 5 mths until last friday so I guess I was doing something right? Maybe? God knows hey hehe.

You could try something similar. Obviously it will be harder for you because of alex's allergies :(

If it IS VV Syncope, then you can rest easy that they aren't actually seizures. It's just annoying that it's so hard for us to work out if it IS vv. I'm sick with worry every day that we will find out months from now that she's got a tumour or something horrible. I think that's just me being paranoid though.
The VV thing really does fit the best for Ava at least, and it does sound like it is what Alex has too.

Have a read of this page:
http://www.merck.com/mmhe/sec03/ch023/ch023b.html

This part made me feel a little better:
If the fainting occurs during emotionally stressful situations or is preceded by symptoms of vasovagal syncope (such as nausea, sweating, cool and clammy skin, and paleness), fainting usually is not serious, and extensive diagnostic procedures and treatment are rarely necessary.

Apparently these 'fainting' things are only really dangerous if they are due to heart problems. So I'm hoping since Ava's ECG was fine that it's just VV. Still a worry though.

Ava never actually faints though, she just goes ultra drowsy, white, purple-lipped, and limp. Does Alex faint?

[LivinOnAPrayer]

Vagus Nerve Stimulation: Fainting may occur if the vagus nerve, which supplies the neck, chest, and intestine, is stimulated. When stimulated, the vagus nerve slows the heart. Such stimulation also causes nausea and cool, clammy skin. This type of fainting is called vasovagal (vasomotor) syncope.


This is alex!!!!

I didnt like reading the part about heart problems cause alex's chd is coarctation (narrowing) of the aorta. She also has bradicartic (slowing of the heart, stopping for very short time, always self resolved) episodes, has from birth. Damn, that adds a whole new dimention to it. Better get the doc to check that. And the pead said to check her sugar levels, so we'll get some bloods taken when shes fine, and try to mesure her bsl when she has an 'episode'. Alex has actually fainted once. That was scary. 2 other times shes just done the pale, cool skin, sweaty stuff. yuk. Thanks for that info. Its sorta good that you know the situation too. Good to have someone to bounce ideas off. So what do they think causes ava's?? The eating stuff too?? And i wonder what it has to do with sleep. Does ava usually have her episodes after waking from naps? Like, i mean the 1st feed after a nap??

[Harlequin]

How will you measure her bsl when she has an episode? With a pricky thingy like diabetics use?
Just curious cos I'd like to see what Ava's are like when she has an episode too.
She did the fasting test where you fast for 4hrs (though she was really exhausted and crying for boobie so she could sleep and only made it to just over 3hrs) but the test came back fine.

Ava's weird, I haven't been able to figure out what the cause of hers are and it's annoying when you see emergency dr's and paeds and some of them say that it sorta doesnt fit VV Syncope! You just think, well then what the hell is it?? If you have NO idea what it is, then how can you say she won't die from an episode?? I don't get it.

The only commonalities with Ava's that I can think of are that she's had a bad sleep the night before and on the day of her episode she will be VERY fussy with food and won't have eaten much. Problem is I don't know if the food thing is a symptom or a cause.

I originally thought Reflex Anoxic Syncope, but that tends to be triggered by a surprise or shock, like falling over or whatever. Whereas VV Syncope can kinda be anything from what I've read. Which is annoying really.

The first of Ava's (i think its the first) was in June 07. She put a dirty bath toy in her mouth an hour beforehand though so I'm not entirely positive it was an episode. She could have ust been sick from the toy... but the symptoms fit. She went clammy, limp, blue-lipped then vomitted. It was a very short episode.

2nd was in August 07. It was the morning. She hadn't eaten yet but had a little boobie. She was grizzling in her portacot so I picked her up and realised she was white/limp etc.
I rang 000 but while I was talking to the health nurse she slowly recovered, it probably lasted 5 or so minutes, possibly 10. She did a little milk vomit before recovering.

3rd was October 07. In her portacot again, I think about 1pm (she was rising late back then). Had only eaten one spoon of baby food and wasn't interested. I put her on my boob but she wouldn't fall off the nipple and go to sleep as usual. She kept rooting for the nipple and was grizzly, I lifted her up and realised she was having an episode.
Unfortunately this time it lasted as long as it took the ambos to get here, which was at least 30minutes (one of the things that doesn't really match the VV diagnosis). I thought she was going to fall unconscious at a couple of stages. She was really bad. She vomited about 5 minutes before the ambos arrived and was perked up when they got here. She still looked like a vampire thoughl.

4th was December. It was a very short episode again. It was 10am, she'd had a bad nights sleep and was on my boob cos she wouldn't eat breakfast. She wasn't settling again then I realised she was having an episode. It only lasted about 5 minutes before she vomited and recovered.

She was fine for 5mths then she had her 3x episodes or extended episode last friday. Not sure. I think it was a mega extended episode because she only recovered properly once she vomited at the end when we were at emergency.
But then that means she was ill for at least 2.5hrs, which makes no sense at all.

I'm kinda at a loss. The paediatrician didn't call me back yesterday either so I'm not sure when he will ring.

Ava's a bad napper during the day so I've kinda learned to keep an eye on her when she's not had enough sleep cos that's one of the things I've noticed with her attacks, she's always tired.