Help me I am begging you to give me your feedback!

As the last post  Hand outs to the parents and teachers stated I sent the teacher a letter explaining my child's needs and made simple send home info for the other parents. After asking a few parents it turns out the teacher never handed out the info to the parents with all the other forms during Open House.  I also have sat down with her explained my child's needs, how simple this is, how wonderful and supporting most of the other parents are.

On the first day of school the teacher requested we have a meeting after school ended that day (half day the first week). I went to the meeting where she said she and the principal felt for my daughter's safety it was best that I be the only one to supply her with a snack. To make sure that she knew the difference between her snack and her lunch and to make it healthy (did I mention it can only be store bought O_o. )

So after paying for all the tuition, all her uniforms not to mention shoes, socks, all her supplies and making sure she has Gluten free supplies, Trying to anticipate all of her art supply needs So I can order the gluten free versions of those and buying the Gluten free shopping guide for the teacher thinking she would actually use it.  I have spent a lot of money.

Now My daughter having gone to school with many of these children last year at the same school is used to being able to eat snacks that are GF and eat the ones I provide when they are not.  So I tried to explain to my 5yr old how she would no longer be allowed to eat what other children brought in. I said that I would send her a snack everyday and she would eat that instead. She paused for a moment and was fine with it.

Today when I picked her up she starts chattering away about random important bits of her day. I was listening and it was a happy banter until  this came up My daughter (MD): Mommy they had Motts for snack today not the juice I know it is GF  the fruit snacks you need to check that in your book and see if it is gluten free.  Me: Did you have your banana chips?  MD: yeah I ate em all up.  Me:  Great! Did all of you wash your hands after you ate? MD:  We DIDN'T even wash them before! (I look at her in the rear view mirror hoping she is kidding. She is not. Me: So you used a wipe, germ X, or Purell.  She shakes her head no and then Says mama I think they were gluten free so you need to tell them. Me: baby you can not have what they are eating anymore. MD: Why mommy? Why not? (my heart breaking and years of teaching her she is the same as everyone else shattering as well) Me: Because you teacher says so. MD: Why Mama they didn't do this before why would she do this?  Me:  I don't know baby.


I am frustrated, angry, hurt, disappointed and want to do something.  I don't want to be rash in my decision and burn bridges where they need not be burned.  I want my child to be included and not ostracized though. I don't want her peers who go to school with each other for 10 yrs or more to look at her differently.  I don't want her to feel bad about yourself. I got her to stop saying I wish I was a gluten girl mommy and I don't want that back.

I see that while the teacher clearly made my daughter bring a snack for her safety she is not taking proper precautions to eliminate cross contamination. I think her explaining to me she would be put at a separate table with her GF playdough is what she thinks is the proper procedure even though I wrote what is and is not proper.  I had not gone to the school to ask them to provide GF lunches to be made available because they worked with me before and why push something when it is going so well.  Well now it is not going well and I want my child to be able to buy lunch if I am tired, sick, or just to have that experience in life.  They had bake sales all the time last year and will be setting up for ice cream and topping soon.  Well she should be able to enjoy that. Without it being cross contaminated.

I could save all the money we are spending and home school my child but there are always going to be these issues or people that pop up in life. She does not need a protective bubble she needs to learn how to function in the real world.   Like I told the teacher I am realistic there are times where I can not control if she gets gluten on her or in her. Then there are times that I choose to weigh if this life experience is worth putting up with the contamination fallout.

Thank you for reading through that here is my question. What would you do as a mother or parent if you were in my shoes? Would you try approaching the teacher again? Would you go to the principal? Would you get the laws to back you up?  Would you just look for another school?  I need some input from other people please.

hand outs to parents and teacher to help them understand what your child can have

While my child is going to the same school with 11 of her fellow students returning I wrote a letter or print out explaining more about what my child can and can not have. Asking them to give me advance notice for birthdays and what they will be bringing so I can try to make sure my child has the same.  I listed candy she could have so at holidays like valentines day or birthday parties  (pinatas or goody bags) so they would know in advance. I wrote in good places to shop in our local area. Just helpful info.

We have a new teacher and this is her first time dealing with gluten so I have made up a printout for her as well. I also bought the new Gluten free shopping guide to stay in her class room.

I am going to share them with you in case you want to copy them and write in your own details. I hope they help.

Letter to Teachers in Google documents

If you  go to file you can download in whatever for you might need.

Letter to the other parents explaining what your child can and can not have

If you  go to file you can download in whatever for you might need.

While this has been written for gluten allergy you can take this format and turn it into any allergy. I tried not to mention anything with nuts since there is also a child with a nut allergy in our class.

I hope that you find these helpful and if you find any changes that need to be made please leave a comment.  

Always trust your mother's instinct

The OT testing results are in. They came in 4 days ago and it already feels like a month.  The results are clear that she needs work in so many areas.  She will have to go to Therapy on top of what we are already doing.  All the doctors she has have different theories about what she actually has wrong with her.

I have found a wonderful Psychiatrist for her that is ok with watching her. He is agrees that starting school and OT (hopefully ABA) will be huge changes in her life and that we should not throw pills at her now.  While he has discussed all of the different illnesses he thinks she might have at this moment due to testing, observation, and reactions to different stimuli he has also made it clear he has NOT diagnosed her with anything.   He believes in watching and making certain the child really has what he is labeling them with. That putting a label on is easy but taking a label off is hard.

I have worked for years to find people to listen to me, my pleas have fell on many a deaf ears.  I kept fighting and this is just the begging.  I just want every other parent out there to know that there is hope.  So many people will tell you they are fine, your friends might think your crazy, even your own spouse may start to think you are going over board. You might feel guilty when doctors tell you it's your fault or you are just making it up but it is worth it.

I have made a Plan for our life it is as follows

1) If you can not help her or bring anything positive the situation then you can not be apart of our team. I don't care who you are!

2) If you can not support us and the plan we are using then you can not be apart of our life.  That is Family, friends, therapists, teachers, anyone.

3) The plan will be flexible to change.  It is what The doctors and I think is best for her and if it needs to be adjusted to accommodate her better it will be. Deal with it!

4) If we do not have to medicate we won't but if and when that time comes it is MY decision.

5) The first medication is not always the right one and I do not need anyone making me feel bad about my child suffering so please keep your comments to yourself or feel free to leave.

6) I will not be obsessed about fining a diagnosis.

7) I will work on fixing what we can until she has one if she ever does.

8) I want her to be treated as normally as possible.  Yes she does need somethings that are different then other children but they do not have to be obvious and huge Lets see how far she can push herself and handle it on her own.  When we do have to step in I want to be as creative as possible and make them as small and hidden as possible.

There is so much more I will learn and want to add to this list but this is the plan I have come up with in the few days since I found out to get me by.

The most important item I buy for the new school year Is the not even on the supply list.

Every year I buy what the school requires, find a gluten free replacement, or buy her children latex gloves so she can do the activity with them. The most important item I buy is my  Grocery Shopping Guide 2012-2013 edition  I buy one for the teacher so she can check on snacks and little other products.   I also buy one for myself and now one for my Mother-in-law.  This way she can buy everyday items from the grocery store and know that she is not wasting her money. She knows they are gluten free and safe for us to eat. It saves a ton of time if I am trying something new, they are out of our regular brand, or we are at a friends house and they ask hey can the two of you have this?

If you buy one from there on checkout when they asked who referred you please give them my email address South3rnSass@gmail.com. 

Gluten free make up that is easy to buy

I know for so many people and doctors out there that anything that whether products need to be gluten free if they are not digested is a huge controversy.  What follows is my opinion and mine alone.

Some people have a sensitivity to gluten and that means to what touches their body as well as what they digest. Some people are only bothered by what they digest. That said, If you are wearing lipstick  you could ingest it. If  you chew on your fingernails you can ingest the nail polish.   Lotion or soap on your hands  could contaminate your food. I mean there are a million different ways but most likely if you  have the allergy then you know all this.

If you are a parent to, married to, or even dating someone with this problem.  When they kiss your cheek you have make up there. What about perfume? do you nuzzle your face with your baby's?  You know how they put their hands on everything and then back in their mouths.   I could list so many more reasons for using All gluten free products but I will spare you. 

Now that you read all of that I have FOUND LOCAL GF MAKE UP!!!! Well local for me hopefully close to a retailer near you.  Body Shop has a large selection of it in store.  

I am not much for wearing make up but I do wear it on special occasions so I was glad to see that I could purchase something at the last minute.  I am more excited about Santa having a place to buy products for my daughter to play with. The people were so very helpful so go give them a try.

Waiting for the occupational test results and sensory issues

So my daughter has had cognitive and occupational testing done.  We have the results from the Cognitive  tests stating that she has supirior intelligence for her age. I am awaiting the results of the occupational testing any day.  I mean I literally check the mailbox often  and I want to cry when the results are not there.  They could tell me before we left that she HAD oral sensory problems but wanted to score the tests before telling me the others.

Before I left the therapist gave me some suggestions on how to help her self soothe or to help some of the issues we are facing.  I started implementing them slowly to see which would work and which made no difference.  I have to say at first I was so excited to see a difference in my child's behavior.  If we were going to do something I knew would cause her melt down or act out. I used a sensory game or toys. The behavior difference was to the point that My parents and I would would exchange quick glances trying to make sure the others saw this and we were not going crazy.   As she found an ability to soothe herself she  from these therapies she seemed to become more aggressive and volatile when she did. It has been harder to soothe her with the old ways we used to cope with. As if she has seen that there is a better way to live and she is now fighting to get there.

Has anyone else experiences this with their child? If they have sensory issues or SPD  was it like this in the beginning?  I just really need someone to tell me," You are not alone and this will get better."

Kaleidoscope Associates in Pensacola, FL work with food allergies

I was looking for some summer activities for my daughter to do and  I saw KaleidoscopeAssociates had a culinary camp. I was so excited and then I remembered the class is probably not for kids with food allergies.  So I contacted Jacki Selby to ask her this

Do you offer the summer camp for those children with food allergies? My daughter LOVES to cook.  She can not tolerate gluten in any form. She is only 5 so could not join this year but I am trying to find out for next year.
Thank you,
KR


This is her exciting response:

Thanks for contacting us! Yes, we do offer cooking classes and camps for children with food allergies. In fact, we also offer customized birthday cooking parties for children with allergies. Our associates are very committed to facilitating a "normal" food experience for all children, despite their food allergies. 

I look forward to meeting you and your daughter. If you attend the May 16th Gallery Night in downtown Pensacola, please stop by Distinctive Kitchens and say "hi"! We will be in the kitchen doing food demos with some of our current students.
Have a blessed day,
Jacki

I was so happy and thankful that they already had something in place for people with food allergies. We have all called or written to find out that a place we wanted to go does not and will not allow outside food. I was expecting the answer to be Kaleidoscope  no we do not have a class for food allergies and then write her asking if they would consider making one. The fact that they not only have a camp but parties too is great. I mean how many birthday parties have you gone to where you or your child could not even eat the food at the party. Now your child can not only eat it but they can have fun making it too.

If you are wanting to sign up for summer camp here is the link if you did not find it on the facebook site Class Calendar scroll to June to see the first class.  you may want to call and find out when the allergy friendly class is here is the phone number 850-261-4063. Kaleidoscope does classes in a variety of locations such as Distinctive Kitchen at 29 South Palafox Place Pensacola, FL, Kaleidoscope Associates' classes are in Mobile, AL, and they have a variety of other locations they also present classes. So drop them a line or email and see if there is one near you.

New way to bookmark

As you all know I am a bookmark hoarder.  I have been introduced to http://pinterest.com/  Which is my new way to bookmark.  I have to say  For anyone that is doing a gluten free diet there is a plethora of links on this site.  I am so excited to try all the new recipes!!!  Not  mention if you can come up with a word they have it on there already plus you can pin all of your bookmarks on there as well.  Happy pinning everyone Hope to see you on there.

If you wish to follow me on there there is a button on the right hand side of the page under my the pages that you can click and follow me or just my gluten free board if you want.

Gluten free Christmas Cookies

So if you are like my family and enjoy making Christmas cookies  check out this  Facebook page https://www.facebook.com/GlutenFreeCookieSwap?sk=wall   They are having a contest you can enter your own recipe  for a $850 grand prize or $143 runner up prize.  Now if you are like me you can look at the page for any new GF cookies that would be fun to make.   

What's for dinner?

It's thanksgiving here and what are you having?  We like most people that can not have gluten will be having dinner with people that not only can eat gluten but WILL be eating it.  So what is a Mom to do?  Well I do a few different things to make the day run smoothly.

1) I make a gluten and a gluten free item For example :  My family is having homemade mac and cheese so I made  Annie’s Homegrown gluten- free rice pasta and cheddar mac and cheese http://www.amazon.com/Annies-Homegrown-Gluten-Free-Cheddar-6-Ounce/dp/B000CQ01NS (a favorite at this house)

2) I make things that are gluten free but no ones knows or cares about. The turkey is being fried in new oil and it is a gluten free turkey so we only need one of those.  I baked sweet potatoes for everyone and will let them fix them individually instead of making a casserole.

3) I am making her veggies separately. Some of them are canned and I want to make sure her veggies are gluten free and not cooked with any "special" seasonings that someone else might add that have hidden gluten in them as well.

This is just the way I am doing it this year every year I learn something new and I change the plan a little.  Also The plan varies greatly on whether I am cooking everything at my house or I will be eating at someone else's house.  I think creating a plan for your family will be about the same but it is important to have a base plan.
This means go in with your eyes and ears open here are some things to keep in mind when it comes to making your plan.
Know If the home you will be eating at knows what gluten is and how much they know.
Do they know that just because something does not have wheat on the label that it could still be harmful?
Do they know about cross contamination and most importantly do they take it as serious as you do?



Here are some great recipes for those of you that need a last min idea

http://www.facebook.com/l.php?u=http%3A%2F%2Frealsustenance.com%2Fnovember-go-ahead-honey-its-gluten-free-thanksgiving-recipe-roundup%2F&h=pAQHulm_6AQHBn4n3daOssjFuxYig3WQKvYKPOEgZjv3fow

Jelly bellies Jelly bean products

I spoke to the company about their chapstick and fingernail polish yesterday. Their comment is that they are Gluten free but that the companies manufacturing their products may use gluten in their facilities so they can not claim that any of their products are not cross contaminated.

I have been looking for a "fun" fingernail polish and and chapstick set for my daughter for Christmas. So far I am disappointed.  My daughter being gluten sensitive instead of just having celiac disease means that she has a reaction to the gluten even when she has not ingested it.  Anyone with Celiac disease and that are not highly sensitive however might be able to use this product.

Nutritional therapy and how it plays a role in our life.

This information was sent to me by a reader who has a great blog  Mesothelioma Cancer Alliance blog which you should take a moment to check out.  I personally find that nutrition plays a huge role in our life and the illnesses in it.  I am sure that anyone who has Celiac disease or Gluten sensitivity would agree. If you will please take a moment to read this thanks!

Utilizing Nutritional Therapy As Part of One's Healing Protocol

Nutritional lifestyle should function as a critical facet of one's health and healing strategy, especially for those people who are dealing with chronic and/or terminal illnesses. In this way, a specifically tailored healthy diet can serve as one of the main engines for one's healing journey by providing a foundation for true healing to take place. Additionally, by covering all of the nutritional bases that one needs with a healthy diet consisting of whole, organic foods, one is able to overall feel much better day to day and thus accordingly have more energy and zest for life.

For chronic and terminal illness patients, such as those battling cancers like mesothelioma, setting up a personalized nutritional therapy program can help correct underlying nutritional imbalances that may have contributed to one getting the illness in the first place. In a philosophical sense, we are what we eat, so becoming conscious and manipulating the food that enters our body is an essential facet of a truly all encompassing, holistic healing strategy. Life expectancy outcomes can likely be dramatically improved with the implementation of a proper, personalized nutritional lifestyle. For patients since a strong nutritional foundation will strengthen the body's various organ systems, especially the immune system, which will function best when the patient receives all the necessary vitamins, minerals, trace minerals, cofactors and enzymes, its possible to guide a patient on the path to healing.

In this light, proper nutritional therapy works in concert with other healing strategies, whether they are conventional or alternative and complementary, by strengthening the overall balance and health of the body. At the same time, nutritional interventions can also function as effective remedies in their own right via correcting critical vitamin and/or mineral imbalances that may have made the body more susceptible to the chronic illness or cancer in the first place. Furthermore, the abundance of therapeutic phytonutrients that one obtains from eating a whole food based, organic, healthy diet have a wide range of healing benefits that work synergistically to help the body fight off chronic illness and cancers.

It is possible for people with specific illnesses, such as those dealing with autoimmune disorders like HIV/AIDS and Crohn's disease, or those dealing with targeted cancers to work with a health care practitioner to design a specific diet that targets certain phytonutrients from various food groups that have clinically been proven to help with healing individual diseases. For example, the phytonutrient resveratrol has been shown to be quite chemopreventive and anti-inflammatory, which can be immensely beneficial for those undergoing conventional cancer treatment or who are suffering disease side effects.

Moreover, eating foods abundant in various types of antioxidants and immune-supporting polysaccharides, such as many of the Asian mushrooms like shiitakes, maitakes and oyster mushrooms, has also shown to be helpful in improving the body's healing response to various illnesses. In light of these exciting findings, it can be concluded that nutritional lifestyle therapy can serve as an effective tool in healing for chronic and terminal illnesses, while at the same time working to improve patients' overall quality of life and thus sense of wellbeing.

Gluten free candy list for 2011

Let's face it we eat candy and give our kids candy.  The schools allow so we might as well know what kind is safe and let others know too.  Here is a article from Celiac.com (a fave of mine) and for me they are like calling a company. Gluten free and Gluten safe Halloween Candy 2011  There are new candies coming out all the time though and when in doubt Call the number on the back  to ask them if they are gluten free or not.

Halloween

Like it or not it the day is coming.  I personally love the day and my daughter dresses up everyday so she is in love with the day as well.  So here are a few options for how to deal with the day to make it go smoothly.

1) Have a party - If you have a party at your house you know what is there and you know your child or yourself  will not be contaminated.  If you want help with food give out something that is easy but gluten free to each guest. Like a bag of GF candy or any other GF prepackaged food or drink.

2) For smaller children take them trick or treating! This is what I have done with mine. Depending on the age of the child say 3-up you can decide on something to replace the candy they receive.  I told my daughter it was the one time she could take something from someone without asking if it was Gluten free and put it in her bucket. When we got home she hands over the bucket and we hand over the toy. GF snacks, or GF candy that we all agreed on before she went trick or treating so there are no melt downs.  ***the younger they are you might want to bring a snacks or sucker with you trick or treating if you will be doing it with other people that let their children that are allowed to eat some of theirs on the way.***

3) Go trick or treating at houses you have already talked to and know that they will have GF candy or other items. --My In-Laws do this for us.  They take down a list of candy that is safe for her that year and any of the people in the neighborhood that know my daughter they buy GF candy. There is a long list of candy that is GF and not outrageously expensive so if you know your neighbors give them a handout a of the GF candies letting them know they don't have to buy them it is just a suggestion of what your child can have. Lets face it if you are going to their house and are friends they already know and probably will appreciate it. I would not ever do it with strangers but most of my friends appreciate this kind of thing from me.

4)  If you know a group of people with Gluten sensitive or celiac disease then do something together. You know you be in a safe environment and people who go against the grain rock so you know you would have fun!


How to handle school:

Some school participate in this and some have a fall festival. If asked send in a list of items that your child can have.  I would include pencils, erasers, and other cheap toys on this list because they are everywhere at party city and Walmart right now. The other children would like them just as much, the parents would love not have another piece of sugar put in their kids body, and the other parents probably would be relieved not to have to worry about what to buy for your child that is gluten free.

If you give out something and you do not want it to be candy try http://www.orientaltrading.com/  I have used the a lot over the years and love them.  It would be great if you and several parents went in together so you could get a variety for trick or treating or for the classroom.

Good luck and I hope all of you have a spooktacular Gluten free Halloween!

Fight for yourself

I started this blog to share our journey with you so that you could learn from my mistakes and also what I do right with my child and her gluten free diet.  After much thinking I am sharing my news with you so that hopefully it will save some of you and your intestines.

They now know I have Gluten sensitivity or celiac disease and they know I have had it since at least first grade.  When I was 16 I became very ill and went through a ton of test  finding out part of my stomach and  intestines were paralyzed.  When we asked why no one knew, no one cared. They tried me on the medication approved in the US.  When I could not take it I was told to learn to live with it and I adjusted my life around it.  

I recently went in for more testing and new studies to find out my intestines are getting very little blood now and  I get to try 2 different medicines  if the first one works great! the second is not approved in the US still after 14 years (not sure that the insurance will pay for it). If they don't work they want to put in a pace maker for my intestines and the last option is the dying portion will have to be removed.

I tell you my story because after fighting for my daughter to find out the why of everything I know how important it is.  The doctors should have found out why my intestines were becoming paralyzed 14 yrs ago.  If I had been on a gluten free diet for 14 or more years maybe my intestines would not be the way they are now who knows.  I do know I will never walk out of a doctors office thinking  "I don't know"  is an acceptable answer  and neither should you. 

Hair donation for cancer patient

If anyone is planning on cutting their hair and donating it can you pls contact me and I will let you know how to about mailing. I have a family member that has breast cancer and has lost all of her hair after only 2 treatments of chemo.  She has 3 and 1/2 more months left and then starts radiation so options would be  lovely for her to have at this time thank you all <3

The test results so far for me

I know you are all dying to know. lol  The Endoscopy went ok.   They found a hernia in my esophagus, that I have IBS,  the parts of my intestines and stomach that are paralyzed are not getting much blood, and they had to take extra biopsies.  Depending on what the emptying study shows more paralysis  is whether I will have an emergency appointment or he will fit me in to go over everything. His words not mine.  I have been vomiting and had a lot of pain since the Endoscopy which I never had before but other then that no worries. I have the test next Thursday so I guess sometime after that you will hear the rest of the results

Buddy Fruits are Gluten free and so much more

I have contacted the  buddy Fruits company and they let me know that all of their products are Gluten free.  I think this is a wonderful product for traveling, for lunch boxes, for school snacks, and for just keeping in your purse when you need to prevent a hunger meltdown.

They have 5 different flavors of blended fruit (like applesauce but one does not contain apples), 3 flavors of smoothies, and 4 different types of fruit bites.  To top it all off each packet is a serving of fruit.  All the snacks are between 50-95 calories depending on which you choose. So they would be a great snack if you are on a trying to diet.  What I love about the company is that it is a very green company.  They do not use colorings, genetic modifications, no sugar added, no artificial flavorings and most important to me NO GLUTEN!  They sell them most popular grocery stores so you should not struggle to find them.  They have a zip code locator that you can punch in and find the stores near you that sell them.  So go check them out.

Buddyfruits

Today is Celiac awareness day

What are you doing for it?  If you have not already know what Celiac disease and you do not know what Gluten is then today today is the perfect time to look them up.

Want to really make an impact try one of these 13 things to do promote Celiac awareness from the national foundation for Celiac awareness.

I say try going gluten free for a week!  Even if you just have one pan that is able to be used after washing then you can survive for a week.  You can eat the food at home and try eating out.  Look up which restaurants in your area are GF and what they have they you might enjoy.  This way you are not having to buy all new toaster and pans but you still get to experience the good food.  Also if you have any problems with gluten then a week should show you a little to a instant improvement in a week.

I can only hope that 100 years from now we won't have to have a national Celiac awareness.  The illness is becoming somewhat more recognized and the gluten free community is growing at a rapid rate.  We are speaking up for our needs and letting the companies know that We have money and if they want Us to pay so much for their products they had better be high quality.  That is huge progress considering we made most of it in the last 10 years. So get out there and keep going against the grain!

Gastroenterology here I come

So I went to my doctor today and I mean go big or go home for National Celiac Awareness Day right?  I have 2 biopsies on Thursday,  a swallowing study next Thursday,  did a ton of blood work today and I think there is more but that is what I can remember for now.  

My hope is that by giving me a diagnosis the doctors will be able to better help my daughter.   If I come back with nothing then I will try to have her father diagnosed and move out into other family members.  Lets hope my tests are not like my daughters and lead to more questions and tests then answers. Wish me luck!