Haylies 'testing' day at St Thomas'

[yvie]

Hi all

Well, I typed this all out, clicked 'send' and it had logged me out, so ill attempt to save it this time just in case : )

Haylie saw the eminent Dr Fox at St Evalinas St THomas'. : )

THere IS a new test at last and ill go into that in a mo.

He went right back to Haylies birth, all her medical conditions and reactions to the nth degree.

She has excezma, asthma and milk allergy so was tested for a lot.

First off 2 arms of skin prick tests for all the 'usual' allergies including milk.

ALl negative! so the excezma is genetic, and she must steer clear of anything that brings it up and treat it topically, but she isn't likely to have a true allergic reaction to it.

Asthma, well, she usually has becotide through the winter but after repeating the lung tests several times, she had a poor lung fuction result so has to start the becotide now and stay on it.

THe new milk test is a delayed reaction test not licenced in the UK but obtained from Australia through europe.
It consists of 2 patches that stay on her back for 48 hours. THey are removed and then checked after a further 24 hours.

If there is a rash or anything under one of them (the other is a placebo) then she is still milk protein allergic.

If there is NOTHING at all then there is a chance that she may be clear, but it is not certain, so she will have to have the milk challenge.
That will be done, if necessary, in hospital, in small stages with steroids at the ready.
APparently is she had had steroids when she had the bad reaction 2 years ago, it would have lasted a few hours and not days. SO thats worth remembering!

He talked a lot about the difference between lactose intolerance and true cows milk protein allergy.

Apparently very few children still have it beyond 5 years old.

Lactose intolerance on the other hand can come on at any age, and last for any length of time. SOmetimes people get it after a stomach infection or food poisening, but for some it clears up and others it stays.

Cows milk protein allergy is quite another thing, and he said that he is suprised at the amount of gps and consultants who still do not understand the difference in the disorder, or the ways in which it appears and is treated.

If Haylies test is positive he will see her again in 12 months, and is sure there will be more tests available by then and he will repeat the diallertest.

However if it is negative and she has the challenge it still may mean that she has to be milk free, so a bit in the air still, but with the potential to have a better outcome eventually.

I found this on the net, as well as the verbal info they gave me at the hosptial but its looking good!

http://www.laboratorytalk.com/news/dbv/dbv100.html

I take the patches off tomorrow lunchtime, and send the result on saturday via email to the doctor and I send a picture if there is anything to photograph too. so I will let you all know what happens.

Watch this space

Take care
Yvie x

[cnc]

Sounds quite thorough and positive.

Hope you get the answers you want soon.

I know there is a lot of controversy over the links between milk and asthma, over whether it causes excess mucus, (depending on what you read because of the fat in it, or because it triggers a slower allergy- like hayfever type thing), but it might be something just to keep an eye out for if milk is re-introduced into her diet. I became milk free and my peak flow went up from 300ish to over 500, which as you can probably appreciate was a massive change and quite useful to my life. Some people will tell you it's a load of rubbish, but I know that it made a huge difference to me (but then I do have a slight skin reaction to milk on a skin prick test, not as bad as a lot of my others, but a slight change).

[Copper]

It is looking good so far for Haylie. At least you know that she has seen somebody who knows what they are talking about.

[yvie]

THanks, yes, it did feel a positive experience, even Haylie was happy with it all.

Haylie is so excited about tomorrow, although we dont record the results till saturday......Ive peeked (with 2 pairs of glasses on) and I really cant see if there is any reddening under the patches. They are sort of see through in the middle, but hard to tell so just going to have to wait and see.....oh the waiting and seeing is AGONY! : )

Even though she will have to have the challenge if it is negative, she still cant wait. SHe doesnt seem to understand yet that it may not be quite as cut and dried as she wants it, but Im not going to load her with any more info just yet. Trying to let her just be mega positive....and hope it helps!

[paranoidangel]

Wow, that sounds really good - and a doctor who actually knows what they're talking about!

[yvie]

THanks Claire re the asthma thing. Yes milk causes excess catarrah with both myself and my middle daughter who also has asthma.

I have just started using cows milk again in my tea after 5years, instead of soya, just to see what happens, and this week I have had the .....cuckums......I keep having this silly thing going on in my throat.....and I had completely forgotton I was using cows milk! So you have just reminded me and now I know why the catarrah is irritating the back of my throat!

WHen Haylie had chest infections/colds when she was on goats milk, I stopped it all while she was ill and it cleared up a lot faster than when I just carried on giving it too her. So it definately does make sense.

Im collecting her from school in one hour to take the patches off.........I am so nervous for her......will post again asap

[Copper]

Our fingers are crossed.

[yvie]

THanks Copper.
Well she has gone back to school now.

I really dont know what it all means. One patch was a placebo, so I assumed, rightly or wrongly, that one would not 'come up' as it were and one may or may not.
Well BOTH are red and have papules.

I have taken pics and now have to wait until tomorrow at 1 and check them again.

Maybe the placebo 'comes up' anyway, like the skinprick test, to make sure the test is working properly, and the other one means that she is still allergic.

Dr FOx did say that any redness or papules at all means that she is still allergic and will not have the milk challenge and we will have to carry on 100% milk free for another year and try again.
I really hope not, but its not looking too positive is it.

The not knowing is grim!

I dont know how to put a photo on here otherwise Id post one for you all to see, but if anyones interested Im happy to email one.

I will let you all know what happens tomorrow.

Take care all

Yvie

[linny]

Sounds like Haylie is being thoroughly tested which is a good thing. I hope the results you get from the tests aren't too bad. Strange that both patches caused a reaction?? How long will you have to wait to get the results/ verdict back from the hospital? Fingers crossed for you.

[cnc]

Hopefully you will get a proper answer at least. It may not be the one you want but at least you'll know one way or the other.

I hope Haylie isn't suffering too much from it all. Thinking of you both.

[jill]

It sounds like you are getting somewhere, and that you have a knowledgeable consultant. Keep us updated on Haylie and the patches progress.

[yvie]

Hi again

Yes I think its strange both are up, but im wondering if the placebo causes a reaction on purpose like the scratch test positive/negative? just to make sure its working?

Ive just checked it again and the red outside ring has gone down and just left the inner circle red with like little nettle bumps. I was wondering if she had just had a reaction to the plaster, but now Im not so sure.

I actually forgot to ask when the result would be available! I was more worried about getting the test right! I should imagine as he has asked me to email it to his home address he will look at it straight away, or at least quite quickly. He particularly said he would email me straight away that evening so I had it as it will be saturday and no one will be at the hospital. It was here by the time we arrived home wednesday evening.

Haylie is fine. I havent played it down. Or up! Just told her we will have to wait and see and to stay positive and that flakes arent all that! lol

I think I need a good nights sleep. all this stress is getting to me a bit. Dads had another stroke....and Id like a couple more hours in my day please? and a bar of chocolate? like N O W??? hehehe no really we are fine, just getting on with it.

Bye for now
Yvie

[Copper]

I would expect the placebo to do nothing too - how odd. We wait for an expert opinion. At least then you will know for sure what is going on.

Looking on the bright side this test is not making her ill or putting her in any danger.

[yvie]

Hi all again and thanks for your replies

I have just photographed Haylies back again and it hasnt changed from yesterday afternoon.

THe outer ring where the adhesive was had faded to white and just the inner circle remained but brown rather than bright red, with a little circle of raised papules around it and inside a few little seperate ones.

So now we wait and see. I can only think that either the placebo creates a reaction by design or as you say she has had a reaction to the actual 'plaster' rather than the milk protein.

As you say it isnt making her ill so thats one positive to be grateful for.

We wait on......

Bye for now take care all and thanks again for your replies

Yvie x

[rebecca c]

Hopefully the consultant will let you know quite soon, email does improve these things. Like you say in the skin prick test the control is meant to come up so maybe its the same thing.

Hope you hear soon.

All very interesting to know about, so thanks for posting all about it.

[yvie]

Me again!

I have had several emails from Dr Fox, and he seems to think that she has reacted to the patch itself so its impossible to analyse, so he thinks she should have the milk challenge. Especially as she is quite old to still be allergic, and as its been 18 months since she had milk.

Haylie got quite upset that the test didnt work and insists she wants the challenge. Her father isn't happy about it and im not looking forward to it but she is insistent.

So looks like she will be having the milk challenge.

Ive had a migraine, think Ill go to bed now, been a bit of a week.

Night all will keep you posted and thanks for 'listening'

Yvonne

[cnc]

If she wants it then I guess she's got to have it. It's much better for her to have a planned test in a safe environment than an accidental test and no medication to help her if she does react.

Good luck, and hope things improve for you soon.

[Copper]

Well I guess that Haylie is old enough to make that decision. As Claire said at least it will be carried out in hospital. I can understand that Haylie wants to know if she is allergic to milk.

[rebecca c]

It is a very stressful time for all of you. It does sound like you have found a good consultant though and those are few and far between. It may be that this support will make all the difference. I think your parental anxieties are completely understandable and you should tell the doctor about them, emotions and feelings are part and parcel of the situation as a whole and should be recognised as such. They exist for a reason.

[paranoidangel]

That's just typical really, you have a test that will prove it and she reacts to the plaster!

At least if she has the milk challenge you'll know one way or the other.

[jill]

Hope you are feeling better today Yvonne, at least you are making a bit of progress. The doctor wouldn't be considering the milk challenge if he didn't think it were safe to go ahead. Haylie obviously wants to have it done, we are all here to support you again when the time comes. Take Care.:hug:

[yvie]

Many thanks all for your support. I had another email from Dr Fox yesterday evening saying that he will get it all in motion and we will hear from the nurses in 2 - 3 weeks.

H can't wait to get it done. I think its because she is off to high school next year and she wants to be like everyone else then. Ill let you know when its coming up.

If anyone has had or knows of anyone whos had it done recently, Id appreciate a bit of info. I think its changed a bit, as in they used to just give you a glass full, but now its monitored and dealt with more slowly and I think a placebo may be used too. Im not sure. I will ask as many questions as I can, and if anyone wants to know anything or thinks of something I might not, please do get in touch as sometimes theres that question that really means something amongst the million Ill be asking that probably make no sense.

IT was only Claires post about asthma that make me think of Haylies asthma and now she has had the lung function tests and is back on becotide I must remember to ask about that. I have read that sometimes patients can last for a couple of months after a milk challenge, symptom free, and then it all comes back again. So much to think about now, whereas just keeping her off milk was just an inconvenience at times.

So now we wait again.

THanks Jill I am feeling a bit better although I did have another migraine yesterday the migraleve worked, I just feel weak and wobbly today lol nothing new there then! Dad is very poorly, but he seems to keep recovering from the TIAs although they seem to be getting stronger.

Take care all

Yvie

[cnc]

Sorry to have caused you more things to think about- what would you do without me?!
Hope things improve for you soon, and that you get a break, look after yourself as well, OK:) xx