Allergy Clinic

[bid]

Today I took DD#2 for her annual appointment at the specialist allergy clinic at a London hospital...she has severe, multiple food allergies and we have been going since she was 1.

 

I have had such a horrible, horrible day...everything went wrong

 

First of all, I find it really stressy to negotiate the tube, especially with one of the children, so I budget for a taxi to and from the hospital from the station. We left home at 11.30 this morning, and got into the taxi at 1.10. So far, so good, just under an hour to get to the hospital for her appointment at 2.05. BUT, the traffic was soooo bad that we were late for the appointment, and the taxi fare ended up costing double so knew I couldn't afford the taxi back from the hospital. So that was stressy at the back of my mind, because she really needs the taxi back to the station as she usually feels very unwell after the various tests.

 

Then, she had 19 skin prick tests done!! This is about double the number she normally has done...she was in tears, and had to lie down. Then some of the reactions were so severe she had to have antihistamines. I've never seen anything like the reaction to hazelnut...it was 25mm, which is massive. Anything 10+ is considered a bad allergy...She also reacted more severely again to milk, which we had hoped was lessening.

 

Then we saw the consultant, and I felt like the crappiest mother in the world. We actually didn't have an appointment last year, as the hospital cancelled, so I couldn't remember whether we had done any of the things that had been agreed 2 years ago, etc, and I just looked awful because I had to keep saying 'I don't remember' or 'I don't know' And this is all really serious stuff as her allergies are life-threatening.

 

The results were really awful, too: she will never grow out of her severe allergy to white fish or nuts, and the consultant thought it highly unlikely she will outgrow the milk one, which is what we were so hoping for PLUS, I was told that her allergy to stoned fruit which I thought was more of an inconvenience could also trigger anaphylactic shock so it's life-threatening, too

 

She has got to have 2 epipens with her at all times, she must wear a Medic-alert thing at all times, she's been given another card thing to carry, and they taught her how to do her own epipen as she is getting older.

 

I just feel so awful that it hasn't got any better, in fact some things have got worse. Plus, another cr*ppy article in a paper today about how children's allergies are all rubbish, due to over-clean homes, etc, etc. This upsets me so much, because the fad for people 'deciding' they or their kids have food intolerances or allergies when they are not 'true allergies' just fuels this idea that it's all made up/neurotic parents/a fuss about nothing. But my child has a life-threatening condition that people don't take seriously, and she's going to have it all her life. And I've been there twice with the epipen and 999 for an ambulance. It's not fun watching your child's airways closing down

 

THEN, when we got back to the station, there was a message to say no trains to our town, plus a stupid ticket lady tried to tell me I couldn't use our tickets for another hour?? Luckily, in the time it took me to have a wibble about all of that, a train did appear, and I argued with the lady and strode onto the train. Finally home at 6.45!

 

Sorry, sorry for the rant/essay. And just to top things off, I'll be doing it all again next month with DS#2!!

 

Bid

Edited January 31, 2008 by bid

[hev]

oh bid what a lousy day,i cannot get on with the tube trains at all,the maps make no sense to me and i get highly stressed,where im partially sighted its a nightmare,i phoned the hospital i took steve to last time and they arranged transport for us as he was having tests and may have been woozy after,could you try that option next time?

 

as for the allergies it must be horrendous,i remember calling 999 for steven,its one of the worst feelings as you feel helpless and panicky at the same time.

 

big <'> <'> to you and your dd

[Karen A]

<'> <'> Sorry you had such a stressful day Bid.Karen.

[krystaltps]

Oh Bid... <'> <'> <'> .

What a hideous day you've had. I know how much it can get you down, I'm usually like that after R's appointments (which they insist on giving us in the middle of winter when it's really windy, so that R pukes on the ferry and we always arrive stinking of sick ).

Can you not claim back your travelling using one of the NHS forms you can pick up at the hospital? They allow for taxies if there is a good reason not to use public transport (such as ASD). It may be worth looking into before DS2's appointment next month.

Chin up, hun <'>

[bid]

Can you not claim back your travelling using one of the NHS forms you can pick up at the hospital? They allow for taxies if there is a good reason not to use public transport (such as ASD). It may be worth looking into before DS2's appointment next month.

Chin up, hun <'>

 

Thing is, DD#2 and DS#2 are the NT ones

 

Not sure if they would let me claim for the taxi because of my AS??

 

It's the attitude thing as much as anything, probably the stupid article was the last straw It's like the attitude thing about AS/ADHD, only actually it's worse, because this is life-threatening.

 

I also felt the consultant and allergy nurse didn't think I was being careful enough (didn't help that I'd forgotten her medi-bag ).

 

I feel I can't win: on the one hand the hospital don't think I take enough care, and on the other hand I read articles poo-pooing the whole idea of food allergies

 

I just feel such a crappity mother

 

Bid

 

Sorry, should say thank you guys for all the nice posts <'>

Edited January 31, 2008 by bid

[krystaltps]

Thing is, DD#2 and DS#2 are the NT ones

 

Not sure if they would let me claim for the taxi because of my AS??

 

It's the attitude thing as much as anything, probably the stupid article was the last straw It's like the attitude thing about AS/ADHD, only actually it's worse, because this is life-threatening.

 

I also felt the consultant and allergy nurse didn't think I was being careful enough (didn't help that I'd forgotten her medi-bag ).

 

I feel I can't win: on the one hand the hospital don't think I take enough care, and on the other hand I read articles poo-pooing the whole idea of food allergies

 

I just feel such a crappity mother

 

Bid

 

Sorry, should say thank you guys for all the nice posts <'>

 

Bid, you're not a crappy mother... because you care. You can't be expected to remember back to two years ago, two years is a long time in the life and times of bringing up kids.

Articles like to poo-poo the whole idea of a lot of things... don't let some stupid article written by someone who probably wouldn't know an allergy if he/she found one in their soup get to you. C and E have allergies (both of whom have required hospitalisation as a result), as do I, as has my mum... and there wasn't anti-bac when she was growing up (nor me, come to think of it).

And I think your DX would count as a very good reason not to use public transport. Phone the NHS trust and ask.

<'>

[Karen A]

Bid I was just thinking.....the thing with specialists is that often they only see the thing they are specialist in.They will think that your DDs allergies are the only important things that you think about.Even for some parents allergies are the one thing they need to focus on.I know you have lots of things you are involved in...it is not possible to be on top of everything all of the time. <'> <'> Karen.

[bid]

Bid I was just thinking.....the thing with specialists is that often they only see the thing they are specialist in.They will think that your DDs allergies are the only important things that you think about.Even for some parents allergies are the one thing they need to focus on.I know you have lots of things you are involved in...it is not possible to be on top of everything all of the time. <'> <'> Karen.

 

Thing is, I feel the food allergies have been side-lined over the years because of DS#1 and fighting for statements, residesi, etc, etc, etc

 

So I feel guilty about that, too

 

Sorry to moan, guys

 

And now I've got to go to work

 

Bid

[pearl]

Awww bid <'>

You must be worn out.

[Flora]

Flippin' heckers bid <'> That's a hell of a lot to deal with (for all of you!).

 

You're not a medic, so don't feel like a bad mum for not knowing all the ins and outs of everything that's gone on in two years... you can keep your dd safe (which is evident that you have) but you can't keep her under a microscope every day of her and your life! It's unrealistic for you to know every single reaction to everything she's eaten in two years!

 

I saw that about allergies in the news today and it irritated the hell out of me too.

 

Flozza

[Clare63]

Bid....what an awful day and now go gotta go to work <'> <'> <'>

 

Don't be so hard on yourself, you certainly have your hands full.

 

Surely you should able to claim the taxi fare back especially considering the treatment/tests your poor daughter was put through, think I would have had to go and lie down in a darkened room, let alone get on the underground !!!!

 

Clare x x x

[soraya]

Oh Bid, sending lots of <'> <'> I know what you mean when you feel you have neglected your NT My DS2 said that he feels l have no time for him because of Nick, and when l think about it he is right, l am always sorting Nicks problems out and l forget l have 2 other sons lt makes me feel very guilty

[Nic m]

Bid,

i hope you get a chance to rest soon, they would not have wanted to listen to 2 years worth of detail anyway so dont beat yourself up.

Considering your daughters allergies you are doing a wonderful job with that alone never mind any other issues you have to deal with.

Raising a child is hard work, times that by three ,then multiply again for managing in these circumstances.

I take my hat off to you, well done.

nic

[bid]

The really awful thing is that over the years I have even snapped at her when she's had a reaction and it's another thing to cope with

 

Bid

[Nic m]

I think that means you are officially a parent/human being.

take care and do not beat yourself up.

nic

[elun1]

<'> Hi Bid

I cant stay cause O won't sleep and he keeps waking W up - just wanted to send <'> <'> <'> and to say you're a great mum to your kids

love Elun xxx

[Sallya]

Bid...I've seen you with your littlies...remember the rock climbing and the picnic?....you are a good caring mum....but you need to have more confidence in yourself...you should be proud of what you've achieved....I think you are pretty amazing..and your kids are so proud of YOU...that was so obvious that day.....I can't do cartwheels...my kids were most disapointed in me.....I think mums are very good at the guilt thing...but you definately shouldn't feel guilty.....you take good care of all your littlies....and I think the hospital need a good telling off for cancelling dd2 appointment last year.....s

xxx

[Frangipani]

Hi Bid <'>

 

I just want to send you a cyberhug. I was working at the school tuckshop one day and during our break one of the mum's told us all about her son's life with that Anaphylactic peanut allergy. She nearly lost him because a teacher he turned to for help told him he was acting and to sit down in class saying -there is nothing wrong with you! The boys oesophagus rapidly swelled blocking his breathing. He ran out of the class to the principal for help as he knew she understood, but collapsed in the playground halfway, Luckily they got an ambulance to him in time. She was absolutely livered by the ignorance of this teacher. She said the public are slowly waking up to themselves about Anaphylactic conditions.

 

Being able to administer the pen is essential just like Diabetics. As her sons older they are doing great. But she is always worrying

 

Your an excellent mum even on a day when your feeling totally at a loss, we all have those feelings/days. <'>

 

All the best

 

Frang <'>

Edited February 1, 2008 by Frangipani

[bid]

Thank you so much for all the kind posts guys, it really means a lot <'>

 

Bid

[Kathryn]

Oh Bid,

 

<'> <'>

 

What a nightmare. The hospital stuiff on its own is stressful enough - if only you didn't have to go to London for it as well.

 

You're a great mum, as Flora says you've kept DD2 safe, and DS2, as well as dealing with the LEA, statementing and all that stuff - you've had more ###### thrown at you than a lot of parents, and dealt with it all (and still come out sparkling ), so don't beat yourself up!

 

K x

[Lynden]

Oh Bid what a horrendous day - that would send anyone loopy! I dont know you that well but from what I can pick up on here you are a fantastic Mum - so please dont beat yourself up - most of those things were way out of your control anyways.

 

((hugs))

 

Lynne x

[Karen A]

Thing is, I feel the food allergies have been side-lined over the years because of DS#1 and fighting for statements, residesi, etc, etc, etc

 

So I feel guilty about that, too

 

Sorry to moan, guys

 

And now I've got to go to work

 

Bid

 

<'> <'> I know it is easy to beat yourself up.OH and I were the same last year when elder DS was off school with anxiety.We felt we had been so busy with stuff with Ben that J had been sidelined.OH says it is like plate spinning....very difficult to keep all of the plates in the air at once when somone keeps passing another one.Please don't expect to be wonder woman.Karen.

[madme]

Bid. Hope you get the taxis sorted for next time.

 

I have nut anaphalaxis- always have trouble spelling that- I've had it since I was 17 and I'm now 40! When I was young I had no epipen - I had some experiences as a result. Other people often don't take it seriously and I myself have forgotten to be vigilant on occasion. That's human! Are you a member of Allergy UK? If not its worth joining. Don't beat yourself up. No-one knows why people have these allergies. My whole family are big nut eaters- I've always steered clear even as a small child. Just a thought but is there a bus from the station that you get into London to the hospital (is it Guys?)- its just that it may be less stressful than the tube. Good luck

[Suze]

Hi hun hope your feeling a bit better today.It sounds like yesterday was a pretty awful day, what alot to cope with <'> .Don,t give yourself a guilt tripyour a fab person /mum.Off load all your bad stuff and do something nice this weekend, go to the pics together or lunch and a bit of shopping.Just having a cuddle and a dvd on the settee will make you feel better. hugs suzex.

[lynne]

Hi Bid,

 

After working in a hospital for many years it is quite common for people to forget what they were told or advised. It does not mean you are a bad person. But means either you did not take it in what the hospital told you, or the ups and downs of life meant other things had your priority.

 

SO don't worry

 

lyn

[rocketgob]

Hi Bid - Sorry I didn't see your post til now - sending you and your DD big <'> <'> <'> - sounds like you had a really rough day , hope that DS visit is smoother and the results are better too xxx

[bid]

Thanks everyone for all your lovely posts and PMs <'> <'>

 

You are all so kind

 

Bidx

[sueeltringham]

So sorry to hear of all your hassles at the allergy clinic. I think clinicians forget that living with food allergies in the real world is downright difficult! My dd has food allergies too, but not as many as your dd. We all try to do our best for our kids, but we can't be perfect all the time. Don't knock yourself, you're doing a great job!

 

sue

[kellyanne]

hello hun <'>

 

I have said my bit to you, so all I am going to add is this............if you would let me hug you, I would :lol:

 

KA x x x xx

[JsMum]

Oh Bid your a great mum and a great person, not at all the things your thinking, its all stress and frustration thats got you all thinking like this, please dont say you must be this and that, it isnt true, you are doing what you can, I dont have any idea how it may be for you, the stress and worry must be immense to wonder how something she eats may effect her, it truely must be quite traumatic.

 

Is there no Disability transport in your area that may help with anymore transporting to and from hospital, we have MEDIBUS is there something similair in your area?

 

I am sure you will be able to get some transport costs, so do look into it, you usually just need a reciept and send it in throw a NHS form.

 

I am soo sorry you have had a really bad day, <'>

 

JsMum

[witsend]

Aww Bid - have just read this - what a stressfull day <'> <'> - you're a really caring person so I'm quite sure you're a lovely mum , give yourself a day off!!

Luv Witsend.