peanut allergy desensitization?

[RRfromR]

Hi everybody, I'm a new poster here. My 27-month old child was recently diagnosed with peanut allergy (vomiting after eating, positive skin test, 39.7 level after blood test). He was skin-tested twice before but had negative results, with one of the negative skin tests happening after the vomiting incident. No other allergies and also eats and loves pistachios.

I read an article named "Maternal peanut exposure during pregnancy and lactation reduces peanut allergy risk in offspring" and also the Duke Univ study on desensitization; I'm thinking of introducing peanuts in my diet (the child is breastfeeding) as the safest desensitization route.

My plan is to have some peanuts at work on Friday and nurse when I get home, so I can keep an eye on the kid all weekend.

I have 2 questions:

1) is there a possibility that he might get anaphylaxis while sleeping? Currently he sleeps in his room and we'd like to know if we should sleep in his room.

2) is there a possibility that he might get anaphylaxis during the week if I have some peanuts on Friday morning?

We're not very happy with our current allergist (her approach is don't give peanuts, have epipen handy, come back in 1 year, there's nothing she or us can do) and we're waiting to see Dr. Robert Wood, but our appointment is at the end of the year. Our current allergist was shocked to hear that he's still nursing and told us that the milk has no value for the child at this age. Would this be 100% true?

thanks

[LisamommyRN]

I know nothing about desentization, but of course your milk is still nutritious and valuable to him! That's like saying if you eat carrots, sweet potatoes are of no nutritious value to you, because they contain similar nutrients. Just rubbish, IMO.

[mamafish9]

If he skin tested positive for peanuts, that's an IgE allergy, and no way would I be trying to de-sensitize him via breastmilk. Peanut allergies can often go from a more minor reaction to a scary, anaphylactic, life threatening reaction. Do you have an epi-pen? I'd want one whether or not you decide to try sensitizing him.

[scsigrl]

I would NEVER mess around with anything like this on my own. Children get sick even under a Dr. assisted process like this. It is seriously dangerous.

I would suggest following your Drs. advice.

[sbgrace]

I know the frustration of wanting to fix things like this. I think treatments are on the horizon fwiw. Your son also has a decent chance out outgrowing peanut in time without exposure. Stats are better for him then they used to think. So it's not hopeless by any means.

I get why you're researching this and I'm glad you've posted here. Now for the blunt part--

1. Yes he could die in his sleep. My son's biphasic anaphylaxis was in his sleep--well, he woke but he didn't come get us or call out because his blood pressure had dropped. That's what happens when they are dying. I feel really fortunate my son didn't die that night.

You could sleep with him but I'm not sure if you really understand that even kids who get epi shots and ambulance immediately can still die. They can also die three hours later when it seems they are better (that's biphasic). They did another peanut desensitization study (this one was earlier) and it was halted when a child died in the hospital setting with full rescue system in place for the study.

2. Yes, he can get peanut protein for many days from your milk. I think the amount of time varies from person to person--at least that's what I've gathered here.

Safety aside, have you read the details of the process used (set/exact tiny daily doses slowly incrementally increasing over a long period of time if I remember correctly). Eating peanuts and breastfeeding in no way replicates this. You're past the point of exposing him before an allergy develops so that research doesn't apply to your situation either.

It would not be wise to try this and I'm certain Dr. Wood would be aghast. I strongly suggest you read his book.



Less important stuff but, since you mentioned pistachio, I did want to share some information about pistachio particularly with you so you can think through the possible outcomes given he clearly has potential to develop further allergies and he's eating a lot of another strong and serious allergen.

My son is pistachio allergic (and it's shared protein foods--cashew and sesame). Of all the tree nuts his biggest RAST number is to pistachio. We believe it was trace pistachio or cashew that caused his anaphylaxis. Cashew brings with it the most severe and deadly anaphylactic reactions of them all. Sesame brings with it horrible restrictions--no commercial bread products or baked products, no crackers, no eating out, spices contaminated, and on. It's among the worst allergies for "messing up your life" avoidance. We're going on vacation this summer and my son can't eat anything other than our food we prepare for him from our own sesame and tree nut free supplies (not at all easy to get/I mostly shop online now from a limited set of companies). No stopping somewhere for lunch on the drive or going to a dinner show. It's a stinky allergy. I hope your son doesn't develop a pistachio allergy. I'd consider allowing him to eat them every four days personally so he continues with exposure but is less likely to sensitize.




Your current allergist gave you good advice about peanuts (you do have an epi or preferably two right?) but horrible advice about breastmilk! Your milk is great for your son as long as it doesn't have peanuts .

[JaneS]

OP,

I wouldn't try this at all, much too risky. My understanding is that peanut desensitization is only attempted when the blood levels come way way down?

Breastmilk contains a TON of nutrients that cow dairy or other foods do not, and it's raw (more easily digested). That dr. is parroting the mainstream, very uninformed view.

And ditto to previous mention, a person at risk for anaphylaxis absolutely needs 2 epipens with them at all times. Sometimes you can need another injection within 5-15 mins while waiting for ambulance.

Rachelle,
Thank you for being so blunt. I needed to read this today... DS has a sesame allergy and my STBXH seems to think he can continue to be cavalier about restaurant food. I'm just so sick and tired of repeating myself over and over again and feeling so alone for being "so overly cautious".

[momofmine]

I agree with all the above posters. I wouldn't try this. It is not safe. My child getting trace amounts of peanut through my BM was my first clue that he was "sensitive" to peanuts, turns out he was actually allergic. The info you are referring to was to prevent, reduce the risk of, not for treating after it's already developed.

[mama1803]

Originally Posted by momofmine

I agree with all the above posters. I wouldn't try this. It is not safe. My child getting trace amounts of peanut through my BM was my first clue that he was "sensitive" to peanuts, turns out he was actually allergic. The info you are referring to was to prevent, reduce the risk of, not for treating after it's already developed.

I completely agree. I have a similar story. I ate tons of peanut butter while pregnant at the advice of a dietician who was helping me with my gestational diabetes. I ate very little while breastfeeding, but it was enough to sensitize my ds. Persistant eczema led to allergy testing right around his first birthday and we discovered he has an anaphylatic allergy to peanuts.

What you are proposing is not safe and could lead to a series reaction.

[sbgrace]

Originally Posted by JaneS

Rachelle,
Thank you for being so blunt. I needed to read this today... DS has a sesame allergy and my STBXH seems to think he can continue to be cavalier about restaurant food. I'm just so sick and tired of repeating myself over and over again and feeling so alone for being "so overly cautious".

Oh Jane
That would terrify me. My dad has a similar attitude. My parents haven't been alone with my kids since Caleb was diagnosed for that reason.

I remember reading somewhere (it was in relation to a list of anaphylaxis deaths) that "if your child has anaphylaxis and you're not the most neurotic mom in your social circle you don't really grasp anaphylaxis" or something like that.

Would the allergist "inform" your ex of the risks/be listened to? Does he at least know the early signs of ana and has he practiced using an epi on an orange?

I'm sorry.