My sweet celiac and youngest, Izzy

Wednesday, July 30, 2014

IHP, 504 and more.....oh my!

Well yesterday was the meet and greet/ orientation for Kindergarten.  All I can say is wow. Sometimes all of the preparation in the world is not enough and you get caught off-guard.  I'm very excited about being in this new school and having the kids on a year round schedule but apparently they had not received our records from the traditional school and had no idea about Izzy's allergies and as her teacher said to me, "I have no idea what celiacs is, I look forward to reading your letter".  My scariest moment was talking with the school nurse about lunchtime and listening to her say she could eat with everyone else.  But do not be discouraged.  Remember that you are your child's advocate and because things did not go as planned does not mean that they are not going to work the way they should.  I sent the school nurse and teacher an email with my letter attached and received great feedback same day.  They have already started the process of IHP with her doctors and are looking into a 504 plan for her in the future. 

IHP- Individualized Healthcare Plan is a plan put in place between the doctors, educators, parents and the school nurse to ensure your child is in a safe environment. An IHP will detail what measures the school team will take to reduce the risk of allergen exposure, recognize symptoms of an allergic reaction and how to treat symptoms of exposure (Izzy reacts differently than an anaphylactic child but it will be recognizable just the same) .  For instance, Isabelle will eat at the "allergy table" at lunchtime so that she will limit her exposure to gluten.  She will also have a designated area of the classroom where she will be able to play without worry of playdough or some other form of gluten coming into contact with her. 

504 Plans are a little more extensive. It gets its name from the 504 section of the ADAA regarding disabilities.  It's purpose is very similar to an IHP but can allow for things such as extended absences due to a gluten exposure.  It also would benefit her if her auto immune symptoms worsen in the coming years for other accommodations that I don't expect we will need but are there as a safety net if they are.

No  matter which plan is instituted, make sure all of your concerns are in writing. It is so important for the school staff to understand their role in keeping your child safe.  Make sure the plan addresses key issues that require attention in the classroom (like Izzy needing a playdough/food free zone to play) as well as other areas (like the lunchroom). 

Stay excited, prepare your child like I said earlier in the week, make the new line of communication in a new school a positive one.  Izzy already feels comfortable knowing I've spoken to the teacher and the school nurse and is excited to go to school on her first day.  School is supposed to be the most amazing experience and journey, allow that. 

On our celiac journey I also wanted to note that there are some key things your immunologist/doctor should be looking at, that I was unaware of.  So, whether you are gluten sensitive and/or have celiacs or are just on a strict g-free diet your doctor should be testing some levels regularly.  Iron, Niacin, Vitamin A, Vitamin E and Vitamin D (We got plenty of Vitamin D this summer in FL;)).  I don't like my sweet girl getting stuck but it's important with most celiacs absorption not at a level it should be. 

Monday, July 28, 2014

Back to square 1 and back to school

Life can be so funny sometimes.  Two years ago our trip home left me feeling like I couldn't wait to leave and get back to the Midwest.  This summer's trip left me feeling like all I wanted to do is be home again for good.  Izzy's food allergies have been a very similar circle as well.  Two years ago we were certain of celiacs, then another allergist introduced a another possibility(FPIES) as well as another food allergy (egg), now on our way home from Florida we had an appointment with a pediatric GI specialist that brought us right back to celiacs.   The auto-immune affects that go along with that were suddenly overwhelming me all over again as if we had a new diagnosis. Suddenly my writers block of the last year or more is free flowing again. It's as if I was waiting on confirmation of something I already knew.  All in all, my sweet angel who seemed so tiny when I started this blog for her and Lana, is starting school on Friday and that just introduces a whole other set of crazy emotions.  My oldest graduated high school as my youngest graduated preschool and heads to a whole new world in a whole new school.  It reminds me of all the hidden dangers for her, new people to train on her allergies and not wanting her to feel different.  It hit me today, my best defense is a good offense so just as I did 13 years ago with Lana, I'm writing the teacher a letter to educate her a little more on Izzy's allergies and what it means to have her in her class. It occurred to me there are a lot of us dealing with the back to school blues (or celebrations;)) right now and I have a few tips to keep yourself organized and keep our allergy kids safe. 

First off, the letter.  The teacher is just as overwhelmed at meeting all the new kids as well as parents as we are sending them off.  She doesn't really have time to listen to all you have to say about the allergies while you are in orientation or on the first day.  So a letter is perfect.  She'll know exactly the hidden dangers in the classroom and can ask you questions via email as needed. Secondly, ask her for a list of the kids birthdays in the class so that you can send in a safe treat for your child and they don't feel left out.  Keep "safe snacks" in the classroom as a back up, labeled with your child's name. Find out the schools policy for lunchtime on where your child sits (allergy table or in classroom, etc) and prepare your child so they aren't surprised the first day.  As with celiacs, Izzy can't even play with playdough so the teacher needs to be aware of that and I'll either make a batch of safe playdough or send in moon sand for her to be able to manipulate in the classroom safely.  Forming a relationship and partnership with the teacher as well as the school nurse and other school administrators is key. The best thing though is preparing your child.  "No food sharing/trading" should be a rule no matter where you are but especially in the school setting.

Prep breakfasts and freeze extras for easy mornings (muffins, pancakes, breakfast sandwiches or wraps are all easy to freeze and reheat).  Look for fun alternatives for lunch boxes so not only does everyone else want what they have but they don't get bored with the same old thing. 

These are just a few tips, as the week progresses I'll post more and some recipes too.