Can you call the allergist to get your questions answered now that you've had some time to think about it?
I don't know how it is in ON, Martina, but in AB, access to doctors is pretty restricted. I think he felt he was being generous by agreeing to see me again in January! Thx for missing me
You have persisted for so long with the hope of new foods and now... no option to do so?
?
Your horror is appreciated, Elo!! But, I guess technically, I could go back to doing my own thing, with individual food challenges through my milk. I have been holding off on those in prep for the prick tests. I did restart his vitamin D drops yesterday as DH is particularly antsy about those. He is having a lot of extra NFs right now, but I don't think that is related to any of this. He just seems hungry.
I doubt I could get a second opinion as this guy is considered a real expert and there aren't many allergists that work with kidlets.
Would you be up for a week into elemental formula and expressing all the time to keep your milk up as a test? Easier said then done. How DO you get a baby on a bottle so quickly anyway?
Nope. I couldn't do that. My pump and I have a tenuous friendship at best and it usually takes me several longish pumping sessions to get enough milk to leave for a bottle (which he will take, at least with EBF). One crazy idea I came up with as a test was to give him a bottle of a friend's milk, with the idea being that even though she is eating everything I am not, if the milk lacks my problematic cytokines, maybe he wouldn't react?? But, that doesn't really get me anywhere even if that does prove the doctor's theory correct. More likely I think, is that I will offer S something directly like carrots, and have him react (proving MY theory that it's not just milk and soy that cause problems).
It makes me wonder though, if he tested negative and has no allergies, then that is a bit of hard evidence. But what did he say about food intolerance? Ahis reactions to your foods considered an allergic reaction - hives/skin stuff and instant response or are they more related to food intolerance reflux flaring, unsettled, sore tummy, etc....
Well, it is hard evidence that he didn't react to skin pricks, but given that most of his symptoms are GI related, I'm not really that surprised. Even the eczema comes from the gut as it appears 'last' in the cascade of things that happens after a bad food ingestion. But, the doctor said that food intolerance IS because of cytokines, but neither DH nor I could work out what his rationale was there, although DH feels sure it was explained in some reasonable fashion, he just can't recall what. I have to admit that once he said that all other foods are "so chopped up" in your milk (except dairy and soy) they won't cause any issue with breastfeeding, and his recommendation was to abandon nursing despite other benefits (which he says are mostly already realized by this stage in the nursing rlsp!?), I was only able to half-concentrate on the rest of what he said.
http://jn.nutrition.org/cgi/content/full/127/5/985S Do Milk-Borne Cytokines and Hormones Influence Neonatal Immune Cell Function?
I also read that, "Food protein-induced enterocolitis syndrome (FPIES) is a non-IgE-mediated food allergy characterized by severe vomiting, diarrhea, and often failure to thrive in infants. Symptoms typically resolve after the triggering food-derived protein is removed from the diet and recur within few hours after the re-exposure to the causal protein. The diagnosis is based on clinical symptoms and a positive food challenge."
http://www.hindawi.com/journals/cdi/2009/679381.html This is not quite our situation, but the case involved rice, so obviously some doctors think that it's more than just milk and soy. Also note that it says non-IgE (which is the only type that the prick tests can measure for).
Spencer didn't have any reaction to the skin prick tests either, but gets hives/redness and GI symptoms from eggs & milk, so that is enough for my allergist to keep her off of them until we can do a food challenge.
I'm a bit confused here, Heidi. She gets hives etc from your milk when you're eating eggs and milk or directly? If the latter, what do you mean 'until we can' do a food challenge?
Unless he is privy to some cutting edge research (which he may very well be, I'm certainly not) that's quite a claim that he's making regarding your breastfeeding causing his reactions. And from my limited knowledge of immunology, I don't believe that what you eat has anything to do with your cytokine production, unless YOU are allergic to that food item and it's triggering an immune reaction.
When I went to Dylan's allergist for his skin and blood tests, he asked if I BFed or FFed. When I said that I was still bfing he congratulated me and said that that was the best thing that I could be doing for him. Dylan certainly doesn't have the number of sensitivities that your DS2 has, but we are dealing with multiple food allergies and I don't see how the principles could be so different. I agree with all the pps that suggested getting a second opinion - you are clearly so committed to bfing that I wouldn't wean solely on the opinion of one doctor when so much research doesn't seem to support his claim.
Thank you so much for wading through some real scholarly stuff, Vikki. I had read of the possibility of atopic mothers making their babies more atopic, but it's good to read that it's not the only opinion!
The crazy thing is that he is positing that it is my ENVIRONMENTAL allergies (to cats, dust, pollens, etc) that are causing the cytokines in the milk. I am not allergic to any food that I know of, although pork does make me ill. He said I would know by now if I was allergic to any food (but I think many people take years to work them out unless he is talking about strictly anaphylactic type responses??). Anyways, I'm not suffering with allergies right now and my exposure to potentially problematic things is super low (for example, we have almost no carpet in our house and a great hepa filter on the furnace). So WHY would my milk contain high enough levels of enviro-generated CKs? And this is the big question for me medically, WHY does what I eat have any impact on this? I can trace his reactions to careful food logs (and we do have a safe baseline, so huh???).
I had a hard think about it, and at this point, I am not even entertaining weaning. I firmly believe breast is best for my little guy. It's also a big part of how I feel good about not mothering FT (I like my work!). If I have to keep starving to continue, I'll do it (luckily, I am not yet underweight!!). I recently talked to a gal who had a similar story (but no prick tests) and she saw a huge improvement between 9 and 10 months. The doc says 'it's too hard on your family' but did agree that I was not going to do any longterm damage to S by continuing, although he says his whole system is probably somewhat inflamed even on my baseline diet and that would go away (presumably) if I switched to FF.
Put really basically cytokines are the proteins that communicate with Cells in the immune system (over simplification).
My Immunology is very rusty as it is over 10 years since I have worked in that area, so I could be wrong, but in theory yes it could be the issue, BUT if your environmental allergies aren't really bothering you then is it your low diet etc, but it still doesn't quite make sense that there would be high levels of cytokines in BM.
My mind is running 100 miles/hour, partly because I'm so rusty in this area & so I don't know if it isn't adding up because I don't remember stuff or because it doesn't make sense.
So what doesn't quite add up is how he can be sure it is the cytokine (protiens) that are causing the issue & not the food (protiens) in the BM? What was done to test? because just because it wasn't an allergic reaction doesn't mean it isn't an intolerance.
I think it's because he believes that only dairy and soy proteins cross over through breastmilk in high enough concentrations (or perhaps particle size??) to be relevant. The more I think about that, the more cross I get. But, he was a nice reasonable man who did seem to have a lot of info. DH keeps saying "I think you should just believe him" but only in so far as there is no reason for concern when giving solids.
I would be wary about the comment about dairy proteins. My paed allergist and dieitican both have confirmed that all food chemicals (natural and synthetic) and food proteins pass through the milk... so his comment would mean that they are wrong and also the whole allergy unit at the Royal Prince Alfred Hospital is indeed barking up the wrong tree! It also measn that all the reactions I am logging are a mistake and not due to the foods that I am carefully challenging... ...I think it depends on how sensitive your baby is, as to whether the foods in the milk will cause trouble or not.
Is there anyone in your practice who would be willing to give me a letter to that effect? The nurse who did the pricks seemed to care ZERO for any information I have gathered, my logs, etc. And even with the MSPI she said 'but did a DOCTOR diagnose that'?? I don't want to be the crazy mother! Sheesh. On the other hand, maybe there is no point trying to convince him. Maybe I should just carry on with my original plan... to introduce in solid form the foods he is tolerating through my milk (while holding my diet constant) and then try to add new things through my milk first and then give to him (all the while letting him get older and stronger)?
Thanks so much for the hugs, Jenny, Kate, and Kirry. If it weren't for my amazing support network here, I think I would have numbly agreed to give up long ago. And I still might. And I really feel for those of you faced with this dilemma. But for today, my thought is: I've survived this long on just 5 foods and 2 condiments, I can go longer I think (although feel a bit teary at the prospect of doing this on a 10 day vacation upcoming to Mexcio at the end of November).
p.s. sorry this got so long. maybe I should have done multiple replies instead?
