Direction please

[k2ma]

DS1 has a milk allergy - we have known this since he was 5 months old.

I have, on the advice of the only paediatrician i have access to, waited until now to get him tested. He will be 2 this month.

We live in a remote location 4 hours from the next nearest town and a day's drive from the big smoke. So for a myriad of reasons, which I shall not bore you with here, it is difficult to get a second opinion...

We were referred for bloods last week. We went to the path lab at the local hospital but after 3 attempts, 2 needle insertions and thousands of hearbreaking tears we still had no blood collected.:banghead:

We have to go back this week to 'try again' or find an alternative.

My cry is "WHAT ARE THE ALTERNATIVES?"

I read so much on this site about tests and treatments. I am so ill informed about my son's condition and I don't know where to go to get more information.

I worry that I am overreacting and overdramatising the situation- I don't know anyone else who has this problem I feel as though I am letting DS down by being unable to get the correct information.

It impinges on our life too - I am afraid to take him places like playgroup as I worry that he will grab some other child's milk - I watch him like a hawk when we are out and never relax... it is a relief to get home where I know he is comparatively 'safe' even though we have had one reaction incident.

Anyway, I digress.

When we go to see the dr on tuesday I want to be better informed. I want to feel as if I have asked for things to happen rather than been told what I can and can't have for my son's health.

Can you ladies help me please?

[2boysmama]

If he has to have another go at a blood test, I suggest applying an Emla patch 1/2 to 1 hr before. You can get them from a chemist. It helps numb the skin a bit.

[k2ma]

Unfortunately DS reacted to the Emla patch and his arm puffed up so they could not find the vein:rolleyes:...it seems we are destined not to have an easy ride with this.

[draught]

Are you aware whether it is an allergy to cow's milk protein, lactose or something else?

I am aware that a number of children who are allergic or have a reaction to cow's milk protein can grow out of it by the time they are 2 or 3, so that might be what they are testing for.

I am not an expert as my children don't have allergies but friends' children do - what you need to know is the nature of the allergy and what to do if he has a reaction. One little friend who is allergic to cow's milk protein and hasn't grown out of it was at my house fo the day today. He knows to only drink "his" milk - a soy drink, that he has Nuttelex not butter, and that cheese makes him sick. So it is a case of him being educated about what he can and can't eat. Of course that will depend on the severity of the reaction that your child has.

I am not sure if any of this helps - but what you might like to think about is what information will help you achieve a good quality of life for him and yourself, if that makes sense.

[k2ma]

Thank you for your responses.

Right - I am sure that DS is still allergic to milk as he had a severe reaction about 3 weeks ago on his lips where he came into contact with my hand which had been handling milk products earlier in the day - i thought i had washed them thoroughly...obviously not. THis is what has scared me.

Dr said he may grow out of it by age 2, but he is 2 in a few weeks so obviously this situation will be with us for a bit longer.

I just want to know where I can find out - website / phone line etc about tests available as I appear to not be able to get this info out of the doctor I have access to.

I have read that some of you ladies have had a skin test done...this has not been offered to us. I don't really understand why. Is the blood test better?

I am not entirely satidfied with the answers I am getting from the Dr but cannot get another Dr opinion without travelling at the very least 400km with 2 children under 2.

Maybe I need to be more exact in my questions

1. What were the name of the tests given?

2. Can the allergy be of different severities an if so how does this affect what they can eat?

3.Did you get nutritional advice provided for your child as they are unable to consume certain foods?

4. Has anyone else's child had the blood test done rather than the skin test?

5. Has anyone had both tests done? If so which was more informative?

6..Does anyone have details of a support group who could give me more info?


There will probably be more questions as I think of them...Thank you all so much for taking time to answer this.

[Amused]

Hey K2ma,

Just discovered a website. Don't know if it will help but I have found it interesting. Good luck on your journey!

Fact sheets - http://www.allergy.org.au/aer/infobulletins/index.htm

[becstar]

That sounds scary, if his lips swell up after just touching traces of milk. It could possibly mean he is anaphylatic....do you have an epi pen? My son is allergic to cows milk protein, but not to that extent (he used to get hives and vomiting but only gets ezcema now). We take him to RPA allergy centre for 6 monthly testing. Where are you located? Is it possible to fly somewhere like Sydney for specialist allergy care?
I will try and answer your questions the best I can.....


1. What were the name of the tests given?
I think the skin ***** tests are called RAST tests but not totally sure. THey just require a quick ***** so not as invasive as a blood test. Testing can be carried out this way from 6 months of age.


2. Can the allergy be of different severities an if so how does this affect what they can eat?
sorry i don't really understand this question....different people react in different ways if that is what you mean? And you should be avoiding ALL milk products including foods with traces listed (if there is a possibility of anapylaxisis)

3.Did you get nutritional advice provided for your child as they are unable to consume certain foods?
We also see a dietician at RPA - but I found that I can cook most recipes and food using dairy-free replacements. Cheese is the hardest thing to replace.

4. Has anyone else's child had the blood test done rather than the skin test?
No, no blood test

5. Has anyone had both tests done? If so which was more informative?
see above

6..Does anyone have details of a support group who could give me more info?
there is a yahoo group called parentswithallergykids that I used to post on, they were fantastic when DS first got diagnosed. I havent posted on there for ages...

also you could look at the RPA website....its got great info on it. http://www.cs.nsw.gov.au/rpa/allergy/
in particular look at their allergy information sheets......

Wishing you the best of luck, it can be hard.
Bec

[fiveofus]

Hi,

My son's lactose intolerance was diagnosed by a stool sample......a lot easier to collect than blood!!!!!
His symptoms are no where near as drastic as your son's though. He was projectile vomitting when I had milk in my diet and breast feeding. He is only 9 months now so I have not intoduced any milk into his or my diet. I recently asked my GP if there was any way of testing whether he had out grown it at all and she said that other than giving him lactose .. no. I will be interested to hear what you find out.

Good luck.

Cheers,
Bec

[k2ma]

Thank you all so much for your assistance with this. I have posted an update in another thread...The info links were really helpful. :thumbsup: