Zac's results

[Lou C]

Paediatrician called me today with Zac's results. His IgE levels are generally high (should be below 29 his were 156), apparently indicating he is quite an "allergic" child!
MILK........... The RAST for milk came back at level 2 which is "moderate". I have read (on Allergy UK) that there is no direct correlation between the size of response shown in the test to show how severe an allergic response can be expected. So I asked him again about an Epipen and he said he didn't think it was needed. I explained the above and also that information I had read also said that if a severe reacytion and coexistant asthma then an Epipen should be considered. He has agreed to write to the Allergy Clinic to get them to see us, although he thinks they will say the same as him.
COELIAC SCREEN.......This came back negative, which I am glad about, however I know that this is not always reliable and I reiterated my concerns about this....because Zac is thriving they seem to think it is highly unlikely that this is a possibility. He mentioned he may refer us to the Paediatric Gastroenterologist for further investigation.
WHEAT...........When he requested the bloods, I noticed he had only put down RAST for milk so I asked him if he would do Wheat as well, so he did this..........This also came back at level 2 showing a "moderate" allergy to wheat............So there we have it........the thing is if I hadn't mentioned testing for wheat we wouldn't have recognised wheat was a problem!!! I knew that aither Gluten or Wheat (poss both?) were definately the problem!
So moving forward no more wheat now, go back to see him and the dietician on 14th July and we'll take it from there......I think I will probably ask to be referred to gastroenterology as well, for a second opinion if nothing else, we need to make sure everything has been covered. Just because he is growing doesn't mean he is okay nutritionally.
We continue to move in the right direction, thanks to me being a pushy b****er!!

[cnc]

That's good news Lou :)

[Copper]

Sorry that Zac has these allergies but pleased that you have been proved right.

[goose]

Great news lou, some times being pushy helps, it shows you have covered everything as a concerned parent Good luck with the next appointment:punk:

[rebecca c]

Good to hear you have some results.

[goose]

Ah im devastated now lou, cleaning and looking after people my middle name.
just give me a shout:lol2:

[Lou C]

Ah im devastated now lou, cleaning and looking after people my middle name.
just give me a shout:lol2:
It's a hell of a drive to Leeds though Goose.......give me a few months til I'm living North of the Border and I may take you up on the offer.....be warned you will probably regret it!!! oooh and at least I could trust you to feed my son!

[matt]

keep on pushing, good to hear you have some indication as to the cause.

means you know what to avoid now...

[Pam]

At least you know you are on the right track now, hopefully the further appointments will be helpful.

[ellsie]

Well done to get proper results and questions answered. How soon can you see the allergy doc?:)

[tigerlily]

...from one pushy mom to another: keep being pushy! Have you tried your GP in regards of an EPIPEN JUNIOR?

Eden has one for her Nut Allergy. I made VERY clear that I wouldn't feel comfortable without one for her as everybody knows how adventurous toddlers are with other children's food.... and given her medical history (Heart Disease), there wasn't a question about it, esp. since a Nut Allergy can get worse with age.

Good Luck!

Vanessa.

[goose]

You just keep me going with a diet of dairy free chocolate Lou and im on my way:D . No matter what distance, i'll travel anywhere for chocolate:thumbsup:

[Lou C]

Hi everyone, thanks for all your support, it's with the help of everyone on here that we've got this far!;)

Tigerlily, I think if he had a nut allergy they would have given me one, they seem to think that a reaction to milk isn't as serious!? Zacs previous reactions have been what I would call severe, and he reacts on skin contact, plus he is asthmatic, the consultant described his allergy as an "impressive milk allergy" to the dietician. Despite this he still doesn't think he needs one as he said he only knew of children with nut allergy having Epipens.:confused:
So off to the allergy specialist I go, and if they refuse then I will ask them who I shall sue if Zac has an anaphylactic reaction?

I have plenty of dairy free chocolate here Goose, still got Zacs Kinnerton Egg plus a few bars of Tesco Organic and some G&B maya gold, oooh and some Sainsburys soya choc, which would you prefer???:D

Just been to Sainsburys to stock up on some Free From stuff, saw Tiger White for the first time, so got a carton to try.

Having a party with the smilies tonight!!!:bounce: :bounce: :bounce: :bounce:
Take care all, Lou x

[ellsie]

What a bunch of horse manure! Of course he needs an Epipen. What are these doctors on!!!!! I had all this as well when I first tried to get one and I had the same with my skin. It reacts to milk as well. I am sure you will not be refused one by an allergy specialist because anaphalaxis is a life threatening condition, no matter how much an epipen costs, but if you are then I suggest you go to the local press and get some publicity because that is a scandal.:soapbox::headbang::angry::rant::rant::ran t: I was told by my then GP that I couldn't have one because I probably wouldn't need it! You would have thought in her line of work she would have understood what an emergency was! DURR!

[Lou C]

Hi all, well I recvd a copy of the referral letter, the paediatrician has referred him to another paediatrician, DR Chetcuti to be seen in his allergy clinic. Apparently though the wait is at least 6 months. (My friend has twins who were referred last July and got an appointment for January!) I'm thinking of ringing his secretary to see if I can get a cancellation asap. The annoying thing is that he has put in the letter that Zachary has a Milk INTOLERANCE and a POSSIBLE Wheat INTOLERANCE...........(hasn't mentioned the neurotic mother though!!!!!!)
Has anyone else seen/heard anything about Dr Chetcuti?

[scallywag]

hi lou, it is unfortunate that you have to be pushy to get the care you need for your child. But needs must. I believe that a mothers instinct is usually right. Express your concerns to the GP regards epi pen. I have the same problems at the moment with my son. He has had skin prick confirming sensitivity to tree nuts and sesame seed and also chick pea. It does seem ridiculus that to get full diagnosis of an allergy that your child needs to eat the offending food. I am going into hospital on friday with my son for a brazil and cashew nut challenge. I am worried about this as i dont think that your concerns are taken seriously, you are potentially putting your child in a life threatening situation and i dont think the nurses performing the challenges are sensitive to this. The previous challenge to sesame went well but i ended up back in hospital with my son due to delayed reaction just hives, feeling sick and wheezy. 5 hours later we went home. In my experience when my son had some houmous (greek dip) touched his lips his face swelled. He has the same reaction when eaten. So i think if your son reacts on his skin he is likely to react on ingestion also. Wishing you and your son well, sounds like you are getting there. scallywag....

[matt]

atleast you've got the appointment. nag away and see if earlier appointment possible.

nurses do normally realise but can appear alloof as they see the same stuff day in and day out whereas for you it's your child.

lets hope it is only intolerance then atleast if he gets exposed to any it'll only be bad tummy not potentially life threatening.

[Lou C]

Well before we went away I saw one of my friends whos twins both have a gastrostomy. They were referred to Dr Chetcuti last summer and finally got an appointment in January about 7 months later.
I had to take Zac to the GP about something else so mentioned the referral and had a chat with her about my concerns re the Epipen. She was very understanding and said that she would prescribe me an Epipen but as the Consultant had refused she couldn't undermine him, she does think however that my concerns are valid. She agreed that I should ring the secreatary to see how long the wait would be and if it was going to be a while then she would write to the Paediatrician we are seeing at the moment with her concerns. So off I went and rang various secretaries to find that the referral has been lost, so this is being re-sent. It is likely to be the end of the year before we get an appointment. I enquired about seeing Dr Chetcuti privately and if I do this it will cost about £160, and I can see him next week!! I rang my GP back and she is writing to the paediatrician to say that she thinks we should have an Epipen, so we shall see???
I am very tempted to just pay and have done with it, we can claim half back through the hospital fund so it would cost us £80 and hopefully we might be able to sort everything out, as I am very suspicious that soya is also causing a problem.

[scallywag]

Sounds like you are getting there, i would pay the money and see the dr next week without a doubt on that. Soya is also one of the top allergens regards to food along with nuts, fish etc etc, so it is possible. Great that gp is in agreement with you regards epi pen.

Getting There, british rail and all that........

[Copper]

It is things like this that make our lives full of stress. At least your GP sounds sounds helpful. This makes me cross - you shouldn't have to pay but if you can afford it go for it. Waiting until the end of the year is a long wait :(

[goose]

I would say paying to go private would be a good idea to put your mind at ease. Better than waiting so long for that appointment