''Oh what a night...''

[bid]

Well, on Sunday night my youngest daughter Meg, she of the hand problems and severe multiple food allergies, went into anaphylaxis after eating supper.

 

I had just left for work, when she started to react, with a huge rash across her face and ballooning lips. Jester followed her protocol of citirizine then 6 puffs of salbutamol, but then her airways started to close and she got an overwhelming feeling that something terrible was going to happen ('the impending sense of doom' as they put it in the literature) so he used her Epipen while eldest daughter B called 999 (so, so proud of her, she was so mature and calm).

 

The paramedics arrived within 5 minutes, and when I got to work I had a message to meet them at the hospital. She was a bit tachycardic when I got there but started to stabilise...but then after about an hour she had what they call a 'rebound reaction' as the adrenaline started to wear off. So she was nebulised, a line put in and given IV meds which finally did the trick. Then we were transfered to another hospital. After a night of obs we got back home late yesterday morning.

 

If Jester hadn't used the epipen when he did she would have gone into anaphylactic shock, and what I hadn't realised was once that happens there is very little they can do even in hospital, as once the airways are closed completely they can't intubate. This has been a real shock, as I didn't know this before...I thought once in hospital even anaphylactic shock could be treated.

 

I had been struggling anyway before this with her medical problems (her hand, her allergies and she also has scoliosis)...not physically, but emotionally. So Sunday night has really not helped. I keep thinking I need to look for some kind of support group or forum for children with multiple medical problems, as it can be overwhelming. Counting one tomorrow, she will have had 4 hospital appointments since the beginning of the year, two of them major all-day ones in London.

 

Bid

Edited February 1, 2011 by bid

[oxgirl]

Oh my goodness, what a terribly frightening experience for all of you. Give yourself some time, it must have been terribly shocking for you. Hope she is on the mend now and not too wobbly. <'>

 

~ Mel ~

[baddad]

Hope she's fully recovered now and that you were able to ID the trigger

Very best for the hospital visit tomorrow (and any subsequent ones), and that the progress you posted about last time round with her hand etc is ongoing.

 

L&P

 

BD

[Kathryn]

Oh Bid

 

<'> <'> to you all. Do you know what triggered it?

 

Extra hug to Meg: <'> <'> she must feel that life has dealt her a really raw deal.

 

K x

[Suze]

<'> ,,,,,,,,how frightening Bid glad shes ok now and back home.Hospital trips can really get to you ...my middle one has longterm probs and it takes it out of you sometimes it can leave you emotionally drained, theres always another appointment and something else to worry about.It never ends you just have to stay strong for them and battle through , best wishes and hugsxx suzex

[justine1]

So sorry Bid Glad everything turned out in the end and well done to the rest of the family for acting quickly <'> I hope things will get easier <'>

[Mumble]

I'm glad to hear things are okay now physically - it will take time for both of you to come to terms with it emotionally. <'> <'>

 

I know it's really hard not to dwell on the what-ifs after a scary incident like this, so I'm not going to say don't. My only concern from your post was the medical opinion you'd been given and how much this will understandably affect you (and your daughter if she heard it):

what I hadn't realised was once that happens there is very little they can do even in hospital, as once the airways are closed completely they can't intubate. This has been a real shock, as I didn't know this before...I thought once in hospital even anaphylactic shock could be treated.

I'm really not sure this is fully correct. Anaphylaxis and anaphylactic reactions, although they can be fast, aren't a case of straight from airways open to completely closed. Adrenaline reverses the process (and hydrocortisone and other IV drugs they give get you out of the yo-yo cycle). In the very worst case scenario, they do have very very small tubes for intubation. It might help you to have this clarified - I assume she has an allergy nurse; could you talk it through with them and alleviate some of your worries?

 

I keep thinking I need to look for some kind of support group or forum for children with multiple medical problems, as it can be overwhelming. Counting one tomorrow, she will have had 4 hospital appointments since the beginning of the year, two of them major all-day ones in London.

I don't know what sort of support there is, but yes, if you can find it, I do think that's a good idea. I don't know if it's the same in children's and adult's medicine, but I find that, even if seeing consultants at the same hospital, they don't really talk to each other and deal with the condition they're seeing you about in isolation without understanding the impact of other conditions upon the patient. My therapist used what I think is quite a well known quote "the whole is more than the sum of the parts" and I think this really sums up well what you're dealing with with multiple medical issues - because it's not just each condition but the interaction of each condition too. I think if you can find some support from people who understand this, it'll be really helpful.

[bid]

I'm really not sure this is fully correct. Anaphylaxis and anaphylactic reactions, although they can be fast, aren't a case of straight from airways open to completely closed. Adrenaline reverses the process (and hydrocortisone and other IV drugs they give get you out of the yo-yo cycle). In the very worst case scenario, they do have very very small tubes for intubation. It might help you to have this clarified - I assume she has an allergy nurse; could you talk it through with them and alleviate some of your worries?

 

Hmmm, maybe it's different with adults? I'm just going by what the paediatrician told me. Certainly with both my children the progression to anaphylaxis was extremely quick. The other night it took less than 10 minutes from when Meg first said she thought she was having a reaction to her airways starting to close. And adrenaline doesn't always work, which is why both both of mine have to carry two epipens, and the timescale on their protocol for using the second pen is 10 mins.

 

Anyway, she was seen today at the specialist allergy clinic at a London hospital where she has been going since she was about 2. The allergy doctor said a rebound reaction is extremely rare (only seen two herself), so that's a bit of a bu**er...but Jester and B did everything correctly so to them. My real fear is that as she is getting older and more independent she may one day find herself in a situation where other people won't know what to do. She has had training to use an epipen herself, but I do worry that she might be unable to do so for various reasons...the other night she couldn't really speak, all she said to her dad was 'doom!!' and of course he knew what she meant.

 

I was looking online, and although there are support groups for all three of her separate medical problems, the only ones I could find for multiple problems were for children with really severe disabilities. I would so love to find an online forum like this where I could just talk about how I feel and people would understand. I've lived with special needs obviously, but there is something very different about physical problems, especially when they change your child's body...it's hard to explain Oh well, onwards and upwards I guess

 

Thank you to everyone for their kind thoughts here <'> <'>

 

Bid

Edited February 3, 2011 by bid

[bid]

<'> ,,,,,,,,how frightening Bid glad shes ok now and back home.Hospital trips can really get to you ...my middle one has longterm probs and it takes it out of you sometimes it can leave you emotionally drained, theres always another appointment and something else to worry about.It never ends you just have to stay strong for them and battle through , best wishes and hugsxx suzex

 

Thank you Suze <'>

 

I gave up counting last year when we got to July and she'd had about 19 appointments/OT sessions since the start of the year. Hopefully there will be less this year, 4 so far.

 

On the plus side, Jester has established that he can take time off without losing pay so this year they won't all fall to me.

 

Meg gets low rate DLA, which covers all the travelling expenses which is obviously a big help, but it's really me that could do with some kind of support

 

Bid

[justine1]

Hmmm, maybe it's different with adults? I'm just going by what the paediatrician told me. Certainly with both my children the progression to anaphylaxis was extremely quick. The other night it took less than 10 minutes from when Meg first said she thought she was having a reaction to her airways starting to close. And adrenaline doesn't always work, which is why both both of mine have to carry two epipens, and the timescale on their protocol for using the second pen is 10 mins.

 

Anyway, she was seen today at the specialist allergy clinic at a London hospital where she has been going since she was about 2. The allergy doctor said a rebound reaction is extremely rare (only seen two herself), so that's a bit of a bu**er...but Jester and B did everything correctly so to them. My real fear is that as she is getting older and more independent she may one day find herself in a situation where other people won't know what to do. She has had training to use an epipen herself, but I do worry that she might be unable to do so for various reasons...the other night she couldn't really speak, all she said to her dad was 'doom!!' and of course he knew what she meant.

 

I was looking online, and although there are support groups for all three of her separate medical problems, the only ones I could find for multiple problems were for children with really severe disabilities. I would so love to find an online forum like this where I could just talk about how I feel and people would understand. I've lived with special needs obviously, but there is something very different about physical problems, especially when they change your child's body...it's hard to explain Oh well, onwards and upwards I guess

 

Thank you to everyone for their kind thoughts here <'> <'>

 

Bid

Hi

 

With regards to other people helping her,does she not have a medic alert bracelet? If she wears one someone can know what is wrong and she can have a card with her epipen to explain to people what to do.She can maybe educate her friends on what to do in an emergency as well.

[bid]

Hi

 

With regards to other people helping her,does she not have a medic alert bracelet? If she wears one someone can know what is wrong and she can have a card with her epipen to explain to people what to do.She can maybe educate her friends on what to do in an emergency as well.

 

Yes, she wears a medic alert necklace, her friends know what to do in an emergency, and she's fine at school and home because we've all had epipen training. It's more as she's getting older if she's out on her own...I fear most people wouldn't even know what an epipen looked like to get it out of her E-kit, let alone know how to use it. She could realistically be asking for help to get her epipen or use it, and have someone going 'What??'

 

Which reminds me, the allergy doctor was telling me that someone (possibly the Anaphylaxis Campaign??) is starting a national campaign to have anaphylaxis taken more seriously. I think this is really good...in the past when she was little I've had another mum refer to her as the 'one who's fussy about her food' when asking her to a birthday party.

 

I guess all we can do is make sure we have done everything possible, but it's still very, very frightening.

 

Bid

Edited February 3, 2011 by bid

[Mumble]

Yes, she wears a medic alert necklace, her friends know what to do in an emergency, and she's fine at school and home because we've all had epipen training. It's more as she's getting older if she's out on her own...I fear most people wouldn't even know what an epipen looked like to get it out of her E-kit, let alone know how to use it. She could realistically be asking for help to get her epipen or use it, and have someone going 'What??'

Hmm, yes, it's a tricky one. I have a medic alert bracelet, it's a normal one not one disguised as a fancy bracelet or anything with the supposedly highly recognised symbol, but I've still had people comment on my 'pretty watch' and even had a paramedic say they haven't seen one before.

 

I guess all you can do is cover as many eventualities as possible. Does she carry around really simple instructions on how to administer the Epi-pen? You've probably seen them/have them but Yellowcross do really good bags/cases and you can write basic instructions on the ID card which then laminates and attaches to the case. You could also have slightly more detailed instructions and Next of Kin details on a sheet inside the case the Epipen's kept in. This might sound silly / you may already do it, but something that I have on my medical details also says "If in doubt give this medication; you can not overdose me or do me any harm" which in the world of everyone being scared of helping in case they get sued seems to reassure.

 

In terms of forums / support groups have you seen: AAA? It's still only one condition based, but might help. I really think there's a gap in the support for parents of children with or for people with multiple conditions and this also reflects the way the medical professions think about each condition.

[Kathryn]

I wouldn't know what an epipen looked like or what to do with it, so I think simple instructions - preferably in pictoral form would be a good idea.

 

K x

[Lucie1979]

So sorry to hear of your frightening experience, and glad to hear of your daughters improvement. Must have been so scarey!

 

No advice or anything just wanted to send a

 

x