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What would you tell someone new to LTFA?

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Let's hear it for our FAS community!!  I know that we have a wealth of very hard-won knowledge and resources tucked away on favorites and bookmarks...

so let's set up a clearinghouse thread for this stuff!

What would you tell-- well, you-- when you were brand new to things?

What would you WANT someone to have told YOU?

oh boy.  Where do I start --

That I was going to be able to feed my allergic child, allergic to many foods at first --- and that I'd figure out how to feed that child safely and well.  That things do get easier, although it took me a while.  The only resource I had was FAAN back when it was FAN, and since I didn't have computer access, I signed up for their newsletter and ordered their cookbook.

Also, info that would have been really helpful --- that I would find my child's allergens in really strange foods ... where I'd never expect to find it.  Label-reading is so important.  Asking questions in spite of the embarrassment factor is soooo important.

That doctors don't nec know all about food allergies, and some doctors know precious little.  Learned that one from more than one experience.  That it is okay to go find the doctor who does know about food allergies and can test and can interpret those test results and can do food challenges, to get to what is a true allergy and what is a false positive.

I would have liked to have the anaphylaxis grading chart back then, as well -- what a helpful tool.

There are so many online resources now; I wish I'd had them back when my daughter was first diagnosed. 

so many things I've learned -- I'll have to give it some more thought.

Allergen statements are not universal.  Some companies are great at labeling (nice bold print or an easy label underneath that clearly notes contains statements), others will make you go blind.  May contain and shared line statements are entirely voluntary so don't assume if there isn't a label, that it's safe.

It is always a good idea to double check a product, even better if you have a second set of eyes to look it over.  And remember every time - products change.

When you are starting out - do your best to grocery shop alone.  I personally find my smart phone to be invaluable for shopping so that I can look up products in regards to this board, the Celiac board (DS1 is allergic to wheat, rye and barley) and the individual companies page for their FAQ. 

It is up to you if you want to remove all of the allergenic products from your home.  Personally we have chosen not to do so because DS1's allergens are rather limiting enough though we have had to adapt our cooking practices.  For us, we find colored labels on products when they were younger were helpful (we use garage sale dots and each child knows which color is safe for them).  Others feel better removing the allergen from the home so their child feels safe or they are affected by contact/inhalant reactions.

The School thread is invaluable as you learn to navigate the world of schools from how to deal with birthday treats, snacks, lunches, inclusive, lessons, etc. 

It is so easy to get overwhelmed at first and I know it sounds corny, but it does get better.  It certainly has it's ups and downs.  When you are down, you dial back your comfort zone.  When it's up, it is smooth sailing.

Your gut is always right.

The best advocate for your child is YOU and sometimes you will know more about FA's than a doctor does depending on their specialty.

If you don't feel the person you are seeing for medical care is the best around, then dump them and find the next one.

Your child can still have a really great life and do things that all of the other kids can do (except of course eat certain foods). My child has traveled with us out of the country. He's also been to sleepover camp by himself many times. It takes more work on your part to make these things happen, but they are NOT impossible.

And lastly, no two families have the same experiences. Not all allergy parents agree on how to address allergies outside of their home. That's ok. Do what is best for YOUR child and YOUR family.

Don't be surprised if toxic family members now have to be excluded from your close circle because they don't believe in FA's and do something harmful or hazardous to your child.  :-/ It is an unfortunate reality, but your child's safety comes first.

In just about a month, I will have been on this journey for 13 years.  It gets better.  :grouphug:

Read labels, call manufacturers, learn about cross contamination risks. 

Do not be pressured to have your child eat communal foods, despite all ressurances that others can make it safe.  This is highly individual, but caused me the greatest stress in our preschool years.  In hindsight, rather than give safe snack lists and help with every project and always being room mother, simple provide all of your child's own food from home.  Period.  No flexibility, until older ages where you child is aware and you can teach them to read labels and ask questions on their own. 


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