Anaphylaxis to milk- at 6 months epipen advice

[Legigi]

Hello
My daughter had an anaphylactic shock to cows milk ( small amount in instant baby porridge), which was diagnosed at a&e. she was given adrenaline etc and referred. Blood tests confirm grade 3 reaction to milk. They are very reluctant to give her an epipen although her dietician has recommended it. We are having to wait until after xmas to see the allergy specialist.
Does anyone else have any experience specifically with dairy and anaphylaxis?
I feel we aren't being taken 100% seriously- it's very difficult as milk is everywhere! They have just told me to keep piriton in my bag and keep her away from milk.
Recently went to stay with family and it was very stressful as she's now crawling around and putting everything in her mouth...
Can anyone help?
Thanks

hi leg sorry to hear about your dd, I hope she has fully recovered. I don't have milk allergy experience but ds had anaphylaxis to egg at 8 months. We spent the night on the ward. A junior doctor said we were unlikely to get an epipen as we could easily avoid egg .
I made it clear I wasn't leaving without one and was given 2 after speaking to a consultant.
With hindsight I'm glad we got them. If nothing else it helps me mentally handle a very serious allergy by knowing I have a second line of defence (the first being avoidance).
I wonder would your gp be able to perscribe them? That's were I usually get my repeat prescription.
I found it very scary and overwhelming at first. The anaphylaxis campaign are excellent as are the people on here for advice and support.

NICE guidance does recommend an epipen as an interim measure before being assessed by a specialist but I think there is a minimum weight that the child has to be before you can use an epipen on them.

Why don't you see your GP and bring the NICE guidance along? If they aren't sure what to do because of your child's weight they may be able to get in touch with the allergy specialist for advice over the phone.

The relevant advice is on page 9 of www.nice.org.uk/nicemedia/live/13626/57474/57474.pdf

Thank you very much for your replies. We have already seen the paediatric consultant who says we need to see the allergies consultant as he is the only one who can give out epipens and he doesn't have any appointments until jan. Went back to gp who said she couldn't do anything not even ring to ask them for a quicker appointment.
I think I need to be more insistent.
Will arm myself with nice!!!thanks

Have you found CMPA Support on the web or on Facebook? It is a group of parents who support each other with children who have cows milk protein allergy or intolerance. They have been a really good support and resource for me in the last year. The Facebook page has a forum on and the website is more for information.

Will look at that thanks again. Spoke to someone at anaphylaxis campaign this morning who said they give children of 15kg or more an epipen, for those weighing less its just up to the discretion of each gp- she found it strange that we had not had more support from our gp. She also advised printing out their fact sheet on cows milk.
T

DS1 was prescribed a junior epipen by the GP when he was 9 months old, and weighed less than 8kg. This was an interim measure while we waited for a referral, but he has always had epipens since then.

Obviously avoidance is the best strategy, but I can certainly understand you wanting an epipen! I think the crawling stage is so hard, as they are constantly at risk from traces of food on the floor. There were many baby and toddler groups that I stopped going to because of all the bits of biscuit etc. everywhere, and big, chaotic family buffets at Christmas used to be a nightmare too. It does get easier!

I think a 3 month wait for a consultant is pretty standard. Hope you get some joy before then.

legigi we found out 2 weeks ago that our 6 month old DD is allergic to milk plus she has four other allergies.

She had a small amount of cows milk and we were ambulanced to a&e as she had anaphlyasic (can't spell!) shock.

The consultant at hospital said she should have an epipen but they have decided she is too small. The allergy nurse explained to me that epipens have a set dose that would be too much for her and also the needle is very big for such a young baby.

DD is 7kg and she needs to be 15kg to have an epipen. We are managing with Piriton for now.

Do PM me if that would help as it sounds like we are in a similar situation.

Thinking again about this, I'm absolutely sure that ds1 was not 15kg when we had to administer the epipen when he was 2 years old (he was fine after this). He is now 5 years old, and only weighs about 15.4kg now! (is a small and skinny child on 2nd centile, but still within normal range for his age).

My son was definitely not 15kg at 8 months when his epipen was perscribed. I did read the insert that came with the pen. When I asked his allergy nurse about it she explained that while he didn't meet the weight criteria any negative effects from the use of the pen would be less than not using it.

My DS is not 15kg and has a junior Jext pen, maybe as about those? Not has to use it thou (touches wood furiously).

Ask not as