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CMP allergy or intolerance?

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#1 Jameelah

Posted 04 July 2018 - 11:19 PM

Hello everyone. I wanted to ask about my 14 month old son's reaction to dairy. He has been RAST tested twice now for dairy and it came back negative both times. Every time he has dairy though he gets hives around his mouth and usually starts sneezing soon afterward (one time uncontrollably). He will often get frequent loose stools afterward too but I figure this could indicate intolerance. What confuses me is that the hives and sneezing seem much more like an allergic reaction. Why this bothers me is that I know how allergic reactions can progress from hives to anaphylaxis and being that he can't tell me what he's feeling it really worries me. Does anyone have any idea?

I breastfeed him and both him and I are dairy free but he keeps finding dairy that his siblings leave within his reach (he's newly able to pull things off the table).

For those who are interested in his history:
At 6 weeks old he had green mucousy stools with blood. At the same time he started to get eczema. I talked to my GP about allergies but she wasn't in the slightest interested in testing. Every time I would have a larger amount of dairy he would get blood in his stools so I cut out dairy and soy when he was 3 months and in less than a week we had a very dramatic change in his stools and his eczema cleared up after 7 weeks.

I trialled eating dairy after a while and we had the blood show up again so I went to a different GP hoping to get testing done. They ruled out gastro bugs and parasites and obliged in doing a RAST test. The test came back negative for milk and wheat but positive for egg white (moderate) and peanut (very low). He wouldn't do anything about getting skin prick testing done though.

Back to the original doctor who this time listened and referred me to a pediatrician at the hospital with the aim of them then referring us to an allergist/immunologist. A second lot of RAST tests at 1 year came back with the same results and that was the end of the story as far as the pediatrician was concerned.

Am I overly concerned here? Should I just stop worrying since his RAST tests aren't showing up positive? It doesn't look like skin prick testing is going to be done at all anytime soon at least.

#2 AdelTwins

Posted 05 July 2018 - 12:01 PM

My 10mo was going to have skin prick testing at 8mo. In the end he didn't need it as his reactions are all intolerance ones (mucus/diarrhea).

Are you seeing someone who specialises in allergies? If not, get a referral from your GP.

#3 PrincessPeach

Posted 05 July 2018 - 08:23 PM

The sneezing I'm no that's sure about, but hives around the mouth is a big red flag for allergic reactions as far as I'm concerned.

RPA allergy clinic in Sydney is amazing and they do phone/Skype appointments if you are not local. Maybe give them a call to ask for advice.

#4 Jameelah

Posted 05 July 2018 - 09:45 PM

Oh thank you PrincessPeach! I think that sounds like a promising way to get some answers! I'm feeling quite brushed off right now.

#5 Jameelah

Posted 05 July 2018 - 09:47 PM

AdelTwins, I have asked to be referred to an allergist multiple times. I'll definitely try again though.

#6 Ellie bean

Posted 05 July 2018 - 09:50 PM

View PostJameelah, on 05 July 2018 - 09:47 PM, said:

AdelTwins, I have asked to be referred to an allergist multiple times. I'll definitely try again though.
Don’t ask. Just say “I need a referral to an allergist.” If you can, do some research about who to see and then you can say “please give me a referral to Dr X.” I’ve found being really assertive to be much more effective.
Good luck

#7 22Fruitmincepies

Posted 05 July 2018 - 10:46 PM

View PostEllie bean, on 05 July 2018 - 09:50 PM, said:

Don’t ask. Just say “I need a referral to an allergist.” If you can, do some research about who to see and then you can say “please give me a referral to Dr X.” I’ve found being really assertive to be much more effective.
Good luck

Yes, I’d just say I’d like a referral to whoever just to be sure. Recently the GP said that to me that she’d put in the referral, to get me on the waiting list, but hopefully I wouldn’t need the appointment and could always cancel.

Hives around the mouth is a pretty clear indication of allergy, especially in a baby. Do you have a family history of allergies, are you a migrant, and does your baby have eczema? All three increase the likelihood of allergies.

#8 mandala

Posted 06 July 2018 - 11:36 AM

My son's allergist was happy to diagnose CMPA in the absence of a positive skin prick test, based purely on the symptoms he had from consuming dairy (in his case, horrific eczema and a few scattered hives).

#9 Chicken Pie

Posted 06 July 2018 - 11:45 AM

i'd be peeved at being dismissed after that result considering the reaction - hives to me would be concerning and indicative of an allergy and i would keep arguing and pushing for better insight and answers

#10 Jameelah

Posted 06 July 2018 - 11:34 PM

Thank you for your support guys, it means a lot to me.

Ellie bean, I'm not assertive by nature but I'll have to try to be more forceful in this case.

Does anyone know the name of a good allergist in the public system in Perth?

22Fruitmincepies, I'm not a migrant (nor is my husband) but allergies run in both my husband's and my families and I have other children who have asthma and one other with eczema. My son had horrendous eczema until 7 weeks after I went off dairy. It was all over him! He hasn't had it since I've been dairy and soy free except for a few days once.

Thank you again everyone. You have no idea how much I have felt so dismissed to the point of doubting myself and thinking I'm overreacting... Well, actually, I'm sure you do. Xxx

#11 22Fruitmincepies

Posted 07 July 2018 - 12:03 AM

I’ll pm you

#12 Jameelah

Posted 06 February 2019 - 02:47 PM

I wanted to post and update on how things are going. Our follow up appointment with the pediatrician came through soon after this post. When we saw him this time he referred us to the immunologist at the hospital and the dietician. I was over the moon that we finally were getting somewhere.

We saw the immunologist 2 weeks ago and she did the skin prick test right there and then. This time the results matched what we were seeing. Positive for milk, egg yolk, egg white, peanut, and sesame. He was also positive for walnut and pecan which was new information as we hadn't introduced him to those yet. Soy was negative but I have always felt it was more likely to be an intolerance. Right there and then we were booked in for baked egg and baked milk oral challenges which are scheduled in March.

I'm so happy we are finally getting answers and the oral challenges are even more than I hoped for.

I guess I'm left curious about the connection between the wheal size and the level of allergy. His were only between 3-6mm but I have seen many of you mentioning much bigger wheals (he's 21 months if that makes any difference). His reactions so far have mostly been hives and belly issues but occasionally he gets sightly puffy eyes and sneezing. Once or twice his voice had changed (kind of more hoarse) and I was unsure if it was connected to eating an allergen or not. So I'm guessing he's on the end of relatively mild allergies. Of course I'm not going to be feeding him his allergens either way; I guess I'm just trying to figure out how careful I need to be.
She did say that with peanut being 3x3 she thought he would grow out of it and of course mentioned how many grow out of egg and CMP.

With regards to soy she said we could slowly reintroduce it into his diet. After that I gave him some bought bread -which he hasn't been having due to the soy- and he (and I) suffered for a couple of days due to it. I am not going to even try that again until we at least see the dietician. Does anyone know the likelihood of growing out of an intolerance? Also curious if with intolerance it makes a difference if the soy has been fermented?

Any thoughts/experiences? I wanted to thank you all again for your amazing and much needed support.

#13 cabbage88

Posted 06 February 2019 - 04:22 PM

You need to get on the "breastfeeding with intolerances Australia" Facebook page. Ask this there- there's a hell of a lot of excellent info on there from people in your situation who have seen allergists etc

#14 Jameelah

Posted 06 February 2019 - 04:37 PM

Thank you Cabbage but I'm not on Facebook. Hmm

#15 a letter to Elise.

Posted 06 February 2019 - 05:56 PM

A hoarse voice can be a sign of anaphylaxis, so I would definitely speak to them about whether they think you need an epipen.

My daughter is allergic to dairy, and while initially it was 3x5, it's gotten bigger over the last few years. Most recent one was 17x20. She's had anaphlaxis to dairy in the past, but has also had reactions involving vomiting, hives and diarrhoea.

#16 Jameelah

Posted 06 February 2019 - 06:37 PM

Wow, that's a huge difference Letter to Elise! Do you know if it is common for them to start off fairly small when they are little? I know it could go either way, getting worse or getting better, bit I'm just curious what is normal for the little ones.

I'm hoping we will be seeing the immunologist again after the oral challenges. The problem is that the hoarseness has never definitively been linked to the allergens. We did mention it to immunologist and she never mentioned anything about getting an EpiPen. If we get to see her again though I will ask.

#17 22Fruitmincepies

Posted 06 February 2019 - 06:51 PM

According to DD’s allergy action plan (walnut and pecan) a hoarse voice is a sign of anaphylaxis and you should give the epipen and phone 000.

I’m so glad you were listened to and got tested. DD was originally allergic to egg and peanut, and outgrew those. Something like 90% of kids outgrow egg allergy by 5yo. She subsequently had a reaction to walnut, and was discovered to be allergic to pecan by skin prick. Her allergy specialist is quite hopeful she will grow out of those fairly soon.

#18 ritten

Posted 06 February 2019 - 07:15 PM

Myself and my 3yo have anaphylaxis reactions -me to nuts and them to egg.

Their first symptom of a reaction is hives followed by a cough.

I only get a hoarse voice and then full on airway troubles if it's not picked up in time. It starts woth me feeling like i need t clear my throat repeatedly.

My spt comes back negative...but I still react and end up hospitalised (needed 4 shots of adrenaline last time I had a reaction) my 3yo has a wheal of 10mm (when they were 2yo it was over 20mm) but their reactions come on slower and so far less serious (no overnight admissions etc)

Allergies are confusing!

#19 cabbage88

Posted 06 February 2019 - 07:41 PM

View PostJameelah, on 06 February 2019 - 04:37 PM, said:

Thank you Cabbage but I'm not on Facebook. Hmm
Bummer. I'm not now either,  I just shut it down because I hate how addicted to it I get. I tried to rejoin the groups I find helpful through my husband's account but they don't let men join most mums groups. Thinking of setting up a fake account just for groups!
I'm glad you're getting some good medical help now. It's a tough journey- every GP I saw was useless I had to figure out so much on my own.

#20 Jameelah

Posted 06 February 2019 - 08:14 PM

22Fruitmincepies, is it because her wheal sizes are small that the specialist expects that she may grow out of them?

That's so scary Ritten! You are right, allergies are just so confusing. Thank you for the information about your daughter's wheal size too.

Thank you Cabbage. It has certainly been a long journey especially since I figured out it was allergies way back when he was only 2 months old and I felt really brushed off by the doctors. I had to do my own research and also figure out what he reacted to on my own. I'm grateful though because in the end it has helped me discover issues around food with other members in our family which I may not have discovered otherwise.

#21 daisychaon

Posted 07 February 2019 - 09:59 PM

Oh Jameelah, I didn’t want to read and run... I can not believe what you have been through! It is one thing to be dismissed (as I was) for non-IgE symptoms (ie confined to gut) but quite another for the classical signs of an IgE reaction - urticaria, eczema, hoarseness etc to be ignored by multiple so-called health professionals (especially with a strong family history of atopy). It absolutely beggars belief.
Once I feel we have navigated our way through our own ongoing journey, I feel strongly that I would like to try to do something to educate front line medicos about this. Anyone out the with a public health background??
I am so glad you are finally receiving appropriate specialist care. Good on you for never giving up and continuing to advocate for your child in an utterly hostile environment. I know well the feeling of second guessing yourself and feeling you may be going mad. My heart bleeds for us all.

#22 MooGuru

Posted 07 February 2019 - 10:09 PM

Daisychaon - I have wanted to do similar for a different reason but underlying similar idea of LISTEN TO THE DAMN PARENT!

Ritten - our allergies sound very similar in presentation. I was told by an immunologist that allergy tests can come back as no result if you haven't had recent exposure or something. So basically me being super careful was excellent health wise -  not so excellent test result wise.

#23 Jameelah

Posted 12 February 2019 - 11:30 PM

Thank you so much for your kind and reassuring words, Daisychaon. I guess one of the issues is that not everyone is educated to the same degree on all the various health issues and even within the specialty of allergy.

That's really interesting MooGuru.

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