Any ideas for people who "don't get it"

I have talked to a few other parents of children with FPIES & all seem to have the same concern that there are family members/close friends who "just don't get it."  Can anyone share things that they did to help family members/friends understand better what they are going through. 

And...what have you done with the relationships of those who persistently say things that hurt you or do things that could expose your child to unsafe foods (ie. distanced yourselves, set up "rules" for visits, etc). 

Looking for some ideas on how to approach family & get them to understand how serious this disorder really can be & that eating such a limited diet is not a choice.

Also wondering if anyone has any suggestions for family gatherings & how to navigate that since there is almost always food around that is dangerous.  It is no fun for our child (who wants what everyone else is having) or us (because we have to watch like a hawks to make sure someone or their children don't give it the them).

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Definitely following this one as we are in the same boat, and are now being accused of "punishing"/"torturing" people...

 

We do have boundaries, we always have, and now we just tell them we are not punishing them, but we are trying to keep our child safe and get him through this time in his life. it's hard because he used to be babysat by family, and we just took those priveleges away. As hard as it is to do we *try* to let the hurtful things roll off us, and vent to our friends who do "get it". We also saw a counselor when things were getting esp. bad and she validated that fact that absolutely under no circumstances should our son be in the care of anyone who doesn't get it- it's a safety thing not an emotional thing.

 

I also just printed out a ton of hand outs (again) for people to read, and hoping they will this time read them now that they are no longer allowed to babysit.

 

But I'd love to hear of other suggestions.

So sorry to hear of all the ridiculousness/selfishness you have to put up with.  

In our circumstance, it was my husband's family that was our trouble spot (I have food allergies, so my parents were definitely cooperative and understanding). My MIL was particularly disrespectful and annoyed by our limitations (at one point, when our youngest was 9 months, not yet diagnosed, she and I were eating 7 foods).  But, because of my food allergies, we had been sending all members of his family an email prior to their visits.  The emails include a reminder of the fact that "the allergies are potentially FATAL, and we know you would be devastated to inadvertently cause any reaction (which would involve projectile vomiting, terrible diarrhea, loss of consciousness, dangerous drop in blood pressure, and ER treatment requiring IV administered steroids and fluids)."

We include a reminder to "please do not bring the following foods into our house: ... (Include any ingredients that might be hard for anyone to know are a trigger)."

We also included a copy of the ER letter provided by our doctor, forwarded any info from The FPIES Foundation, and kept them updated after every appointment.  It might be helpful to ask you child's allergist to also provide a letter stating the severity of the allergy and the need to avoid the trigger foods.

I've also considered hanging a sign on our front door that says:
Welcome! We are a rice, tree nut (etc) free house!  Thanks for respecting our needs!

You of course will know the best way to approach your family members.  For my husband's family, we always went with "respect" as a key word. 

It rarely stopped my MIL - at least as far as my allergies go. 

It was a struggle at the beginning, especially as I was far ahead of my husband in terms of understanding and managing food allergies.  But he is much better, and a much stronger advocate for our daughter and I. 

We never let my in-laws care for our children unsupervised (even in our house where there is no unsafe food), unless it was after bedtime.  We both realized it was the only option.

Hope this helps!

Good suggestions.  We have approached this along the same lines as what has been listed.  Although I have to say, that for some who persisted in questioning the how serious the exposure to these foods is (neither of our families have food allergies or any sensitivity to it), I  tried to say that this food is like a poison...that didn't work so well & made them just think we are over - reacting even more.  One thing that did really help with one family member was reading the ER note that was written by our doctor (to take with if she has a reaction).  It was like a light bulb finally went on - that hey, maybe they aren't exaggerating & there is a reason they are always so stressed around us.  

We still have others who bring in dishes with shredded cheese, ranch dressing, "sneak" granola bars  in their purses when we aren't looking, etc.  We also have family members that don't supervise their children at family gatherings, so children in the 4-8 ages end up offering our daughter food, squeezing her cheeks with food on their hands, etc.  The parents then get annoyed because "they are just kids" & don't take responsibility, or downplay it. 

Unfortunately, neither of our families have been exposed to food allergies directly & it's almost as if they don't believe they exist.  Like we are on a different planet then they are.  

We also have family that live far away & will require plane travel to see them & require us to spend a significant amount of time in their homes.  We have not been to visit yet (almost 3 yrs) because we just didn't feel we could do it safely as we would have no control over the environment. Any suggestions for that?

The number one thing I did (and I didn't even do this to achieve this goal) is to write and share our story with the FPIES Foundation.  Once my story went online under "inspiring family stories" I started sharing it with family and friends.  So many people close to me suddenly fessed up they had no idea what we were going through and how scared we were and how bad we were hurting.  Even my own mother, who was supportive from the beginning, admitted she never knew the depth of our situation.  we are now 2.5 years into this and if I ever am talking to someone knew about fpies and they're asking a lot of question or they're just not getting it.. I just ask them for an email address or facebook name and then I link our story.  good luck!

I also just used my FB newsfeed to share allergy/FPIES awareness through out allergy week. Which helped some. The family we have trouble with are not on FB so that didn't help, but once we had a diagnosis from THE Dr who dealt with it, they seem to be now reading the material and taking it more seriously and are now concerned. 

 

I was looking through videos the other day, and one that I shared that seemed to capture the emotion of food trials and the rollercoaster for parents of FPIES is the 2012 allergy week awareness by IAFFPE. It really goes into how food trials are a monument in a child's life and you're excited, and then bam- reaction. I shared that and my mom actually shared it and said it made her cry. 

 

People always want to be present and are excited when they hear P is going to be eating, meanwhile my husband and I are terrified... so those videos helped a lot as well. There is also one the FPIES UK did for allergy week and it's also pretty powerful. 

 

It's tough, but know you are doing a good job and just trying to keep your kiddo safe! In our case we've leaned on friends a lot more, even if just to vent about our frustrations with the family we are struggling with. Though we are picking and choosing friends because some are well meaning, but are not helpful.  

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